JohnO's Health Diary (Blog), from Feb 2004
Summary: (In reverse annual chronological order)
2010
To summarise the last four months or so, I've had a very new drug called Velcade as my new chemotherapy treatment. The baseline marker (Serum-free Light Chains - Lamda) before the chemo was started, was 2704 and apparently advancing, and after the first cycle this dropped to 2440. My haematologist was not happy with this, other than it was in the downward direction. He surprised us by adding an anti-epileptic drug Epilim to the mix, and after the next cycle, the marker dropped to 333! Now after the completion of the four cycles of this chemotherapy, the maker is 57!! So we hope this lasts for a long time. The major side effects were a 3kg weight gain and difficulty in sleeping. But now, a week after the final treatment, sleeping is back to normal and the fluid retention is lessening, and weight reducing. My kidney function is stable and the calcium readings OK. The chemo affects the blood quite markedly, so bleeding is somewhat of a problem, with very thin skin and platelets (clotting) quite low. Energy is coming back as the 'reds' come back to normal too. (The Velcade cost just on $18,000 for the four, three-month cycles, as it's not on the free list.)
I've had three radio-therapy 'zaps' at AKL City Hospital to control lytic lesions in both my femurs (upper leg) and one humerus (upper arm). The myeloma leaches the calcium from bones and makes them very brittle and unable to repair if there is a fracture, so it's no extreme exercise, no lifting etc, which is sometimes embarrassing when Lynnette has to carry heavy things like suitcases, supermarket bags etc, while I tag along!
06 Feb (Waitangi Day) Today is the 6th anniversary of the first symptoms of the multiple myeloma appearing. Although it took until June that year (2004) to diagnose the disease with my GP, chiropractor and physiotherapist, it was finally a nerologist who ordered an MRI which confirmed the malady. At that time the average life-span of someone with myeloma was 15 months. Here I am at six years on, and I've got a lot of music to play yet!!
04 March As good as the news was in Feb with the myeloma marker being reduced markedly from 2704 to 55 , the news today was the complete opposite, and very disappointing indeed, as the marker had virtually increased within this last month to the level before the Velcade treatment started, . Further it seems that the myeloma has now affect my lower jaw, as well as both femurs and humerus bones previously mentioned, and this in turn has numbed my lower lip.
There are virtually no treatments left now, so strong doses of steroids and an injection to assist with the replenishment of the 'whites', the blood cells which fight infection, are to take place this coming week after a bone-marrow biopsy at North Shore Hospital. We continue to live life as normally as possible and last week I spent a day working at Otamatea College, Maungatoroto with the music teacher and students from years 10-13.
So it's onward and upward with every new day a blessing, and time to enjoy the company of our family and friends and appreciating the calls and emails from so many of you. Lynnette and I appreciate your support in every way, and I'll keep updating this health diary often.
2009
Jan: No clinics required now for three months. It's now nearly five years since the first MM symptons appeared.
Mar: The MM markers are on the increase, but the kidney function and blood counts are still good.
Apr: I'm to be included in a four month clinical trial of a new chemo drug, Lenolidomide. I'm very fortunate to be included in this trial, as this drug costs $15,000 per month. Each pill costs about $238 EACH, and I'm to take three a day for 21 days each month! A base-line survey consisting of a bone-marrow biopsy, skeletal x-rays, blood and urine tests preceded the trial, and I have to keep an event by event diary of all medication and side-effects for the four-month trial evaluation.
June: Because I developed a cold and then fluid on the lungs, the trial had to be suspended for a fortnight and the MM readings regressed somewhat during that time. They have resumed their downward trend slightly now, but we're hoping that this next month will see a greater improvement or I will be withdrawn from the trial and another older form of chemo will have to be used.
It's now over five and a half years since the first symptoms of MM appeared and it will be interesting to see where I go from here.
Aug: Not so good news today at my clinic, as the four-month Revlite trial of the new chemo has not been successful, and my haematologist has decided to give me a month's break from any drugs, then it will be back to an older chemo, one which I've had before. This will likely cost over $4000 a month, so some big decisions to be made when the time comes. I continue to think positively and it will be great to be off drugs for the next month.
I also have an annual prostate checkup this month too and there's likely to be no problems here.
Sept: At todays clinic somewhat of a shock as the myeloma is now aggressive again with the specific and important readings jumping from around 500 to 2280. I'm now on 10 steroid tablets a day to hold things while Lynnette and I holiday in the Vava'u's in Tonga with Mark and family. When we come back it's back into chemo and we're to try a funded one I've had before. Unfortunately second time around regimes are not usually successful in the long term. If this old one, PEP, doesn't work, I'll have to go onto Velcade at $1000 a month. Again there are no guarantees. I suppose the one matter that is positive is there is continuing research and especially with new combinations of drugs. They're even experimenting with anti-epilepsy drugs now! I feel fine with no pain and we're living life quite normally, hence our holidays to Rarotonga in July, SE Queensland in August and now Tonga.
Oct: Yesterday's clinic saw the serum-free light chains advance to 2704 and so I've started with another chemo regime this morning. It's one I've had before, but this time the steroid is at half strength and for only two days each weekly cycle, so the withdrawal won't be as bad as before. A few days ago I had severe bone pain in my right arm and yes, the x-rays yesterday showed a lytic lesion in my humerus. Fortunately it hadn't gone as far as the cortex so radio therapy should see to this before more damage is done. Now the pain has gone I'm fine; it's amazing how pain knocks one down.
Our holiday in the Vava'u's was a dream on a 50' yacht with four double cabins, complete with en-suite, and Mark took us to outer islands as well as inner ones. The coral was the best we've seen but not as many tropical fish as parts of Rarotonga or the Great Barrier Reef.
Nov: The first of the new Velcade chemo treatments yesterday. The 'push' is intravenous, and lasts between 3 - 5 seconds! Seems rather odd when the cost of one little 3.5mg vial of Velcade costs well over $2200 and I have to have eight of these over the next three months. My haematologist has some confidence in this new treatment, so here's hoping! Lots of pills to take, mostly to pre-empt nausea, gout, mouth thrush, insomnia, reflux etc. Along with these are steroids and another chemo aligned with the Velcade, is Cycolphosphamide. So at breakfast there are more pills than cereal! At least I won't be losing my hair, and the major side-effect is the 'downer' after withdrawal from the steroids, and sleeplessness, not that I need a lot.
11th Nov. Today is the fifth anniversay of my stem-cell transplant! At that time the average longevity was 15 months, so I'm doing OK at five years!
More appointments yesterday at Nth Shore and today AKL City Hospitals for Velcade chemo, and now a CT scan and tattoo dots for the radio therapy to start next week to allay the further deterioration of the right humerus and femur. Myeloma and its treatment doesn't allow bone healing so avoiding fractures is a major, as steel rods would have to be used if there were to be a fracture.
Dec: Continuing the Velcade chemo and the light-chains readings after the first cycle are in the right direction, ie downwards, but not as quickly as my haematologist would like, so after the third clinic on Tues 15th a decision will be made as to the Velcade's effectiveness and whether or not the treatment is to be continued. An epilepsy drug called Epilim has been added now to the Velcade and this is further evidence that different combinations of drugs are being trialled all the time. The 'easing' off from the steroids each cycle has help avoid the 'cold turkey' withdrawal, but sleeping is still a problem with most days starting at 4am. Can't complain really, as there are no interruptions at my desk at that hour and a lot gets done! More after the 15th.
15 Dec GOOD NEWS TODAY!! Before this new chemo regime was started (Velcade), the critical reading (serum-free light chains) was 2704 and after the first cycle had dropped slightly to 2440. My haematologist was not very impressed, so added a drug the Greeks started using 2000 years ago, for epilepsy! So it's a combination of the very newest chemo drug along with a very old one! Today the exciting news from the second cycle of this chemo is the reduction in the reading to 333!!! We are thrilled, as was my haematologist, and cycle three will now be started to further reduce the cancer count. More good news is the turnover of my consultancy for November and December has been highest its ever been, and therefore the Velcade has been paid for too! Who says prayers aren't answered!
2008
Mar: An exciting time at Terrigal, NSW, where Mark, our oldest son, won the World Masters Laser Radial title for a third time and we were the 'shore crew' and saw it all! Then an exciting weekend at Lynnette's 50th Teachers' College Reunion, also in Palmerston North.
May: No medication for three months now. A visit to Tokaanu and 7-8km walks on consecutive days was a change and no energy problems now.
July: A new combination of chemo drugs started, Melphalan and Dexamethasone were used to counter a rise in the MM readings.
Aug: Started a new chemo drug, Velcade. This is very expensive but fortunately for me, I was given the remainder of another patient's requirements at no cost. He was a small man, and the chemo dose is calculated on body weight and he didn't need the whole dose.
Sept: Now a new combination of chemo drugs has reduced the MM readings, Melphalan, Velcade and Dexamethasone have taken the MM readings down again . A trip to QLD to see our newest grand-daughter, who was just a month old, was very enjoyable.
Nov: Continuing with the Velcade, Cyclophosphomide and Dexamethasone which seem to be keeping the MM at bay.
Dec: A quick emergency ambulance trip to Nth Shore Hospital with severe internal bleeding. I received 12 bags of blood as well as two each of platelets and plasma, plus vitamin K and antibiotics over a week. After camera inspections through both the 'front' and 'back' doors, no internal evidence of the bleeding was found. Now listed for a 'pill-cam', a little camera in a pill which is swallowed and it takes photos on its way through! This is to inspect the small bowel as the other cameras couldn't get to this area. It is thought the bleeding was a side-effect of the chemo. There has not been a return of this bleeding, so no 'pill-cam' has had to be used. 2007
Feb: My Teachers' College Reunion at Palmerston North, which I helped organise. Couldn't find six of my year, but nearly a hundred of the 160 attended. It was a great weekend and a wonderful 'catch-up' after 50 years!
Mar: Prostate cancer now not detectable. Energy levels back to normal.
Apr: MM readings on an upward trend again. More bone-hardening drugs required.
May: A month's small group tour of the Kimberleys in the northern part of Western Australia. An outstanding experience staying on cattle stations and certainly a unique area touring the Gibb River Rd from Derby to Kununurra and back, but staying at different stations on the return trip. Some 2000kms over 21 days travelled.
June: MM progressing quite agressively now and Thalidomide not being effective at all in halting it. The new chemo is called DEP (Dexamethasone, Etoposide and Procarbazine). This treatment seems to be holding things in check, at least for a while. Loosing my hair! An unusual feeling with rain on a bald head!
Aug: A year's clearance given by my oncologist for the prostate cancer, so that's good news.
Oct: My haematologist is very pleased with the latest chemo, Cyclophoshamide, Tenopiside and Dexamethasone. As well, Aredia is used to keep the bones hard to avoid calcium leaching. A month's house-minding on the QLD Sunshine Coast was a great relief.
Nov: Hard to believe, but it's three years since the stem-cell transplant. My hair starting to regrow with waves and curls! 2006
Jan: Blood and urine tests mostly in normal range.
Mar: Start of 35 consecutive days of radio-therapy at AKL City Hospital to deal to the prostate cancer. Fortunately very few side-effects other than quite long trips to the hospital from Whangaparaoa every day. Fortunatly free parking is reserved at the hospital for patients.
Oct: Everything pretty much in the normal range, both the MM and prostate cancer.
Nov: Now two years post stem-cell transplant and just a slight upwards turn in the MM. Thalidomide tried but not really effective. Just as well really, as Thalidomide can induce peripheral neuropathy, numbness of the fingers and toes, and being an organist, this would have been devastating.
2005
Jan: Injections ($874 each) are keeping the prostate cancer under control. Flew to NP for my Mother's 97th birthday and to see other members of the family.
Feb: Haematologist very happy with MM progress with most blood counts, and kidney function in the normal range.
Drove to New Plymouth as my dear Mother died. Played a hymn and some organ music at her funeral. It was so good to have seen her just a few weeks ago. From Mum's estate a three-manual digital organ has been purchased by the family and installed in our church, Trinity at Waiake. Photo at bottom of this page. I enjoy playing this marvellous instrument very much every Sunday and have given a number of recitals too.
Mar: No clinic requred by my haematologist now for three months!
Apr: Getting stronger and walking longer distances without too much stress.
May: Off morphine after a year and PSA, Prostate Specific Antigen reading very low.
June: Travelled to QLD for a holiday in the warm and catch up with youngest son, Simon and family, and other friends over there.
July: Tests for MM confirmed the readings to be very low, so pleasing indeed and showing the stem-cell transplant to be successful in holding the disease for now.
Aug: 26 blood and urine readings, virtually all in the normal range.
Sept: A month overseas, one week in Vanuatu with friends, then a month in Noosa enjoying the warmth in both places.
2004
Feb: The first signs of a disease of some sort became evident because of severe ghost pains in the abdomen. Neither GP, chiropractor, physiotherapist, specialist or orthopaedic and back surgeons, could diagnose the problem.
April: A neurologist diagnosed, with an MRI scan, multiple myeloma, a non-curable cancer of the bone marrow. Myeloma is to do with the immune system. The main cells are called Lymphocytes which respond to infection and change into plasma cells, which release proteins called immunoglobulins, antibodies that attack and help kill disease causing germs. When these plasma cells grow out of control they can produce tumours especially in the bone-marrow and into multiple sites, hence the title Multiple Myeloma.
June: Treatment started in Nth Shore Hospital with Bence-Jones Protein urine tests to confirm MM and a bone 'hardener' treatment was started as MM tends to leach the calcium from the bones which in turn can damage the kidneys. Base-line x-rays were taken. A bone-marrow and bone biopsy were taken from my hip-bone with a cork-screw type device, which fortunately I couldn't see when in use!
Five sessions of radio-therapy to reduce the pain from six pathological fractures in various vertabrae which probably happened during previous chiropractic treatment before the disease was diagnosed. The vertabrae had already deterioated by then. I'm now over 5cms shorter than previously!
July: More chemo-therapy treatment which has reduced the MM to virtually zero, but admitted to North Shore Hospital for a week with a lung infection which turned into pneumonia.
Aug: Prostate cancer now diagnosed after biopsies taken by a urologist. Fortunately not related to the MM.
Sept: MRI scan confirmed both cancers not related. Female hormone injections were started to control the prostate, so mood swings, hot flushes and body shape changes noted! No special feminine underwear required though! The injections did the job in halting the progress of the prostate cancer while the MM is being dealt to.
Oct: Lynnette and I are now staying at the Cancer Lodge which is virtually opposite Auckland City Hospital, in preparation for a stem-cell transplant. This will be carried out in a special sterile unit there. Only five patients are admitted each month, so again I've been very fortunate to be selected. Eight hours of IV chemo, VAD - Vincristine, Adriamycin and Dexamethasone was in preparation for harvesting stem-cells for the transplant. This was followed by injections to enhance the number of stem-cells so there are plenty to harvest. After four hours at the AKL Blood Centre, where lines were inserted into each arm and blood taken from one, passed through a centrifugal machine which took the stem-cells but no other component of the blood, it was then put back into the other arm. (Photo in Diary below.) Cells were then frozen in preparation for the transplant.
Nov: Admitted to AKL City Hospital where I'd be for the next month for the stem-cell transplant procedure. A PICC line (Peripheral Inserted Central Catheter) is a very fine plastic tube entering the crook of the elbow and through a vein to the top of the heart. This enabled regular blood tests to be taken and all the chemo and other drugs and liquid food transferred. The first chemo - Melphalan - virtually shut my body down ready for the harvested stem-cells to be infused. Lynnette staying at the Cancer Lodge across the road. This saved a 65km return journey each day. The stem-cells were then thawed and infused through the PICC line within minutes. They then take about a week to re-populate the body after finding the hip-bone where the older adult blood factory is. I don't remember much of this month and lost 12kgs in weight, mostly because of a bowel infection, Colitis. The heavy doses of chemo before the transplant virtually shut the body down and perhaps not being able to recall this event is a blessing.
Dec: Staying at the Cancer Lodge after leaving the transplant unit and daily visits to hospital for lots of checks. Not much energy these days with haemaglobin counts rather low. Such a nice place to stay though and so convenient. We'll be forever grateful for the support and facilities available via the Cancer Society.
Below is a detailed diary of this whole episode in my life. I continue to live life to the full with a positive outlook always, and am very thankful for the wonderful haematologist I have, and my dear wife Lynnette, and family, as well as my circle of 'carers and prayer-ers' as I call them, supporting me and encouraging me to continue to live life as fully and as enjoyably as possible.
Arohanui -
My Health Diary
Entering a rather dark tunnel:
Early in Feb 04 I had an accident in the garden that displaced some cervical vertebrae (neck area). Over the next couple of months chiropractic and physio-therapies were carried out, followed by orthopedic and spinal surgeon specialists' investigations. None of these could verify a back problem with bone pain and muscle spasms, which were not only painful but also appeared at random sites after the cervical vertebrae displacement was righted.
In April a visit to a neurologist followed by an MRI scan confirmed that Post Polio Syndrome* was NOT the problem, even though there were many symptoms which seemed to match, but he led us to believe that there was a possibility of Multiple Myeloma (cancer of the marrow in my thoracic spine, ribs and sternum) could be metastatic from a prostate problem.
* (I had polio in both legs and my right arm during the 1955 epidemic) With competitive swimming and diving, commenced almost straight away, there was little muscle atrophy after this episode and there have been no real ill effects since.)
After a physical examination there appears not to be a prostate problem, but multiple myeloma has been confirmed by the Bence-Jones Protein (urine) test. Most of my blood tests, of which I've had many, are in the normal range, except that the calcium readings were a little high and the kidney function down somewhat. This is caused by the myeloma leaching calcium from my bones and upsetting the kidneys. The calcium leaching has also led to six pathological fractured vertebrae, one of which could collapse further to damage the spinal chord by compression.
On 3rd June 04, the haematologist called me into hospital immediately and an overnight stay has enabled close monitoring and testing, including over a dozen x-rays, and intravenous re-hydration along with a medicine to harden my bones to alleviate any more calcium leaching.
That's about the bad news, so here's the good.
Turning a corner in the tunnel where lights are being switched on and the exit can be seen!
We have the most marvellous GP, Graeme Whittaker, whom I taught at high school along with his four sisters and brothers. Graeme's mother and Lynnette taught on the same primary school staff too! Graeme has referred me to four top line specialists, Dr Michael Barnes - orthopedic spinal surgeon, Dr Ernest Willougby - neurologist, Dr TK Hemanth - radiology oncologist, and Dr David Simpson - haematologist.
The prognosis is the multiple myeloma is treatable with chemotherapy over a period of about six months and probably at the end of this time, it's possible the marrow is extracted during a blood transfusion, and by culturing or stem cells procedures can be 'purified' in some way and replaced with the blood. Of course regular checks will be inevitable and my life-style will be changed to be less physical I would guess. The radio therapy is for one week only to prevent one of the spinal fractures from collapsing further, as described above. This will be done during the week starting 13 June.
Within 12-14 hours during my overnight hospital stay last week there were marked improvements in the calcium readings and kidney functions. Also the marrow and bone biopsies taken from one of my hips appear to be normal, so there are wonderful things happening already!
Today I read that there's a new procedure called kyphoplasty where little balloons can be inserted into the fractured vertebrae and filled with cement to restore their original shape and consequently return me to near my original height. Currently I'm quite a few cms shorter!
I must note here the absolutely outstanding support, which is being offered, by family and relatives, neighbours, colleagues and especially the pastoral care of many people from our Church. Visits, phone calls, cards, letters and emails are received with thanks and are appreciated so much by both Lynnette and me. We know there are many prayers and positive thoughts being directed our way and we thank you all sincerely for these.
We continue to be strong, (kia kaha) although some times are completely overcome by this support, and every day our prayers are to take this period of our lives, one day at a time and we continue to commit our lives in the hands of our doctors and specialists as well as the Master Healer, who oversees it all and has a plan for me to follow to health again.
Arohanui
Monday 7 June 2004
Monday 21 June 04: Today is the last of five sessions in this set of radio therapy treatments at AKL City Hospital and is focussing on five thoracic vertebrae which have fractured and could damage the spinal cord. The actual 'zap' is only 30 secs long each session, but I understand the therapy will last over a period of about six weeks, with a noticeable improvement in the pain within the next week or so. Muscle spasms in my back continue to be a problem though.
My next chemo therapy sessions start on 1 July. All treatment is progressing well and the specialists are pleased with progress as indeed I am!!. My doctor reported on Friday that the Bence-Jones protein (urine) result last week shows an improvement in the myeloma control, so that's another positive along the way!
Lots of pills to take, up to 22 per day!! They go down well with yoghurt!! Thanks for the continuing support which means so much to us. JO
Friday 02 July 04: Good news from yesterday's consultation with the Haematologist- the Myeloma 'reading' has dropped from 10 (gms/l) to 0.4 - yes, zero point four!! Needless to say we are thrilled as is the Haematology team, and this after just one set of chemo and one of radiology!. A slight lung infection is being taken care of by antibiotics and next chemo sessions start on Tuesday. JO
Monday 12 July 04: Another set of four chemo sessions finished on Friday at Nth Shore Hosp.. A bit of a 'flat' weekend with some horrible tastes in my mouth and very tired, but we won the rugby and cricket, and did well at basketball too! Having L's sister Maureen from NP for the week was a wonderful help and great to have her bright company. Thanks for all your emails, cards, letters, phone calls, visits, which are much appreciated. Your support helps us no end to get through the 'tougher' times. JO
Monday 19 July 04: A clinic today with my haematologist. It appears there's been a compression fracture in a vertabra in the lower back and now a balance between pain management and exercise to assist in the repairing is required. Everything else is coming along fine with all 'readings' virtually in the normal range and the myeloma improvement is 'spectacular' to use the haematologist's word! He's now talking about a stem-cell transplant later in the treatment. Having a spell off chemo and radio therapies just now, but still lots of pills every day! Again, thanks for all the wonderful messages - we value them very much. JO
Thursday 29 July 04: Another meeting with the haematologist today and the myeloma 'reading' is now ZERO!! All other readings are in the normal range, kidney function, blood, etc etc, and the prostate biopsy, although not confirmed in the lab yet, appeared to be quite normal according to the urologist. So all in all a very pleasing day today!! Thanks for your support. JO
Thursday 12 Aug 04: After last weeks' good news some not so good today. Admitted to Nth Shore Hospital on Sunday last with a lung infection which has now developed into pneumonia, and today prostate cancer has been confirmed by the biopsy after all, so more and different treatment will start soon. Hospital life is somewhat different to being at home, but the caring of all the people here is first-class. Hope to get home again during next week as the lung infection is slowly improving. At least I'll have the Olympics to watch during the long nights in hospital! Again, thanks for the supportive messages that are being received every day! JO
Thursday 19 Aug 04: Home from hospital on Monday afternoon last and clear of the pneumonia. A meeting today with the urologist and the prostate cancer is to be treated using hormones - more pills to take!. An MRI scan is planned to confirm if the prostate is the only diseased organ. Having two distinct cancers (myeloma and prostate) makes the treatment rather difficult, but we're sure the specialists will arrange the best that's available. Lots of emails, cards and messages are being received and everyone of them helps in keeping us positive. JO
Monday 30 Aug 04: A more comfortable week with little or no pain now. Walking for up to an hour each day now and enjoying the sunny days. A very serious meeting with the bone-marrow transplant team at AKL Hospital on Tuesday and this option may be taken depending on the results of an impending MRI scan. If the transplant does take place it will be a three to six month procedure and recuperation, with at least a month in the transplant unit, AKL Hosp, in that time. Our thanks to all our relatives and friends who continue to support us so much. JO
Saturday 11 Sept 04: Had an MRI scan of the pelvic region yesterday to confirm the extent of the prostate cancer. Results during next week. Not a very good weekend last with an accumumlation of chemo toxins laying me low for a few days, but a lot better this weekend. More news during the week. JO
Saturday 25 Sept 04: On Thursday last three important meetings were held at North Shore Hospital with specialists in haematology (including a bone-marrow biopsy via hip bone and a skeletel survey), oncology and urology. The GOOD NEWS is that all three specialists agreed that the prostate cancer is contained within the organ and has not spread anywhere else! This means that my nomination for a stem-cell transplant will be confirmed (only five are chosen each month for the whole region) and this three-month procedure is to start on Monday 4 Oct. This transplant will take care of the myeloma in the long run, and within two years or so, the prostate will be treated either with radio therapy or surgery. In the meantime it will be controlled by three-monthly hormone injections. The Cancer Society nurse has put us in touch with a lady who lives within a couple of kms of here, and who has just completed her multiple myeloma stem-cell transplant. This contact will be very helpful and another example of the circle of support that surrounds us.
Last weekend we spent four days in Nelson at the Music Advisers' Reunion which included going to the Wearable Arts Awards show. It was the first time away from home for eight months and very enjoyable too it was!
As things stand now, my health outlook is very positive, even if there's quite a lot to go through still. The transplant team at AKL Hospital consider my transplant procedure will be successful as my body's reaction to all the treatment I've had so far has been so positive.
Thanks to you all for your continuing support in so many ways. JO
Tuesday 05 Oct 04: Home from a couple of days staying at the wonderful NZ Cancer Society's Domain Lodge, opposite the AKL City Hospital where I had eight hours chemotherapy yesterday in preparation for the stem-cell transplant next week. This morning we met the specialists who will carry out the transplant procedure and saw the amazing machine at work with another patient. I will describe this all in the next report. Quite comfortable at the moment but not much energy! JO
Saturday 16 Oct 04: Last Saturday I commenced daily injections of a drug to enhance the production of stem-cells by the bone marrow, ready for harvesting. The first blood check at AKL City Hosp on Tuesday was low, but by Wednesday, the count was high enough to have the harvest that afternoon!! (This was two to three days earlier than expected.) So a short trip later to the AKL Blood Centre, and after four hours on a 'miracle machine', the harvest was completed. Below is a photo of me (note the new hair!) connected to the 'harvesting machine' where my blood is taken from my left arm, then in the machine the actual stem-cells were separated from the blood in a centrifuge, and the remaining blood was returned to me via my right arm! Who said miracles don't happen these days?!! This procedure took four hours when my blood was cycled through the machine 2½ times to get the required cells, which are now frozen awaiting the transplant back into me on 11 November. There was only one small hiccup during this week when I was vomiting a couple of times because my kidneys weren't coping with the anti-coagulant which was used during the harvesting process. Had one litre of saline intravenously to rehydrate me on Thursday. Today I'm feeling fine again if somewhat lacking energy.
I now have three weeks to gain strength before the hardest part of the year's treatment is to start - I enter AKL City Hospital, Ward 62, on Tues 9 Nov. Lynnette and I continue to marvel at the support from you all which we would like you to know is noticed and appreciated every day! LO & JO
Sunday 31 Oct 04: On Friday morning last we had meetings at AKL City Hosp with the Consultant, Specialist BMT (bone marrow transplant*) nurse, pharmacist and dietician. The social worker was away. They all outlined their respective parts of my BMT and all systems are go for my admission on Tues 9 Nov. Have had some really good days now that the last chemo treatment is well past. Haven't had to rest in the afternoons and I'm driving the car, playing the organ at Church and doing lots of things which are more normal now, like shopping for clothes! Hope to continue gaining strength before the transplant starts. During this coming week we plan to keep very busy with something different each day. Love to all from LO & JO.
*Although the term 'bone-marrow' is used, now-a-days it really is a 'stem-cell' transplant.
Saturday 13 Nov 04: On Tues last I had an ECG, chest X-Ray, and other 'baseline' tests after being admitted to the Transplant Unit in AKL City Hospital. This unit which accommodates only five patients, is sterile with higher than normal atmospheric pressure to ensure no air comes in from outside, and everyone has to 'wash-up' before entering the unit. Wednesday was the 'installation' of the PICC line which is a very tiny tube (catheter) which enters my body via the crook of the elbow and threads through a vein to the top of the heart. Didn't feel a thing!! Through the PICC most of the drugs etc enter, and blood tests are also taken through this line. Had a 'serious' dose of chemo (malphalan) plus lots of re-hydration on Wed afternoon. On Thurs I had the stem-cell transplant, ie putting back the cells which were harvested about three weeks ago and frozen. To date I've had a little nausea but this is well controlled with drugs and ginger ale, would you believe?!! Am eating well and keeping up as much in the way of fluids as I can. Lynnette is staying across the road at the Cancer Society's Domain Lodge so she can take the five minute walk to and from my ward each day. More news in about a week, depending on how I feel during the 'down period' when my physical and mental state will be affected somewhat with the after effects of the chemo therapy I had on Wed. In the meantime, thanks again for your support which is greatly appreciated and felt by us both. L & J
Friday 3 Dec 04: I'm sorry there's been such a long gap between the last entry and this one. During this last fortnight I have been to hell and back!! I don't want to remember or record one facet of this experience for either myself or all of you. We had been warned that the stem-cell procedure was life threatening. Today's visit by the 'A' team (consultant, registrar, doctor, nurse) has intimated that all the signs are in positive mode and I may be leaving the BMTU in a few days time. Lynnette and I will stay at Domain Lodge for ongoing checks and treatment for the next week at least. Thanks to everybody for their continuing support, which we value every day!
Wed 8 Dec 04: We're now in a lovely unit at the NZ Cancer Society's Domain Lodge and at 10am we cross the road to the 'Day Care' part of the haematology dept at AKL City Hosp. These visits will be twice or three times a week to check on my blood counts. The last readings show that my bone marrow is now re-populating my own blood so this is really miraculous! I'm eating full meals (have lost 12kgs) so there's a lot of catching up to do! Not much energy in store, but this will gradually return over the next few months as I get stronger and stronger. It's just wonderful to hear birds outside, have the sun shining in the room and of course having Lynnette here all the time! I'm now able to have visitors provided they, or any of their families or contacts, don't have any type of infection. Please phone beforehand: (09) 30 80 160, Extn 313. There is parking available at the Lodge.
We are now seeing the results of many months of treatment and for sure, the prayers and thoughts you have all sent our way have made a difference. Lynnette and I acknowledge and are so thankful for our 'circle of support' as we call it. Arohanui to everyone. Lynnette & JohnO
Friday 31 Dec 04: We left the Domain Lodge (what a marvellous place this is, so convenient and comfortable) on Saturday morning 11 Dec and it's good to be home again among familiar things, people and places. I'm able to drive the car and walk around the shopping mall, getting the banking and posting done etc. I'm sleeping well and eating moderate sized meals. Drinking plenty, as per instructions of nursing staff! Gradually putting on weight again after being down to 59kgs. My hair is starting to grow again too, so shaving is back on the daily agenda!
After having lots of energy all my life I'm finding running out happens very quickly and easily, so I have a siesta most days and carefully measure what I can and can't do physically. This situation will improve over the next months.
Yesterday (Wed 29) I had blood tests and bone and marrow biopsies. Next Friday (07Jan 05) is a final meeting with our head consultant at AKL Hospital and we hope that the whole stem-cell transplant procedure will be confirmed as successful. Watch for my next diary entry!!
Thanks to all for Christmas and New Year's greetings; we're certainly looking forward to a better year in 05 than this one, and your continuing support will make it so. Love from Lynnette & JohnO
Thursday 27 Jan 05: Today is T+77 as the transplant staff call it, that is 11 weeks after my stem-cell transplant. How time flies! We still await the results of my bone and marrow biopsies, but all the other results are fine, except my haemoglobin which is low at 103 when normal is 130 or more I understand. This means my energy and stamina are still lacking and I have a siesta most days. My PSA reading is less than 0.16 which means the hormone treatment I'm having, an injection (costing $874 each) every three months, is keeping the prostate well under control. At that cost, we're thankful for the public health system and we actually pay only $2 to pick up the drug from the chemist!!
My specialist has told me I can eat what I like and travel where I like, and last weekend I flew to New Plymouth to celebrate my Mother's 97th birthday! The flight was 35 mins only so was very comfortable. Other members of the family drove to and from NP.
So many of you have sent greetings for a better 2005. We would like to send to you all special greetings too for 2005, and thanks for your continuing support. Arohanui - JohnO
Friday 18 Feb 05: Today was our first consultation with the haematologist since October before the stem-cell transplant at AKL Hospital, and he is very pleased, with nearly all the results in the normal range. My kidney function was a little out of kilter because I don't drink enough. He says as long as its wet, I can drink anything! Any suggestions?! The haemoglobin reading has risen from 103 to 113 and 130-150 is normal for males. He explained that my blood 'factory' is damaged and therefore I may not ever reach the normal range but there's no panic at this stage. I now don't have to see him again for three months, and my appointment for the prostate treatment is to be in April. Lynnette and I are now planning to set one week a month as a holiday. Funny how one's priorities change after a serious health problem! So next week we are spending in a lovely beach house at Point Wells, NE of Warkworth. [This last week I drove to NP and back as my dear 97yr old Mother died and we had a wonderful celebration of her life last Monday.] JO
Monday 15 March 05: The latest news is my haematologist doesn't need to see me for three months! He, and my doctor, are both pleased with the direction things are moving, as a result of the latest blood and urine tests. My haemoglobin reading is still slightly low at 114, but my energy seems to be increasing. Really, my only problem is a lower back tiredness as the muscles are having to do what my spine used to do. The prostate problem is to be seen to in April when we meet my oncologist and urologist.
Yesterday we had a special service at Church, where the three-manual digital organ I've purchased as a celebration of my return to health, was dedicated. After the service I played a mini-recital for about half an hour. I'm thrilled with the instrument (see picture below) and it sounds wonderful with its external speakers being placed in such a way that the sound disperses evenly throughout the auditorium. It's great to have a 32-note pedal board and 52 speaking stops after playing a quite small instrument for the last 30 years. All the chemo and radio therapies don't seem to have affected my fingers or feet in any way, so I'm pleased about that. We were thrilled to share the service with relations and friends who joined the regular congregation and the church was full! I had the opportunity to share a testimony of appreciation for the support we've had over the last 15 months and to look ahead to a more normal life again. We will always be grateful for the support which has arrived in so many ways. JO
Wednesday 06 April 05: Every day I'm getting stronger and a couple of days ago hiked with Lynnette from Army Bay to the end of the WGP Peninsula which involved some quite steep climbs over the 1 1/2 hr walk. Seem to have lots more energy now. Enjoying playing the organ as much as I can and plan another recital at 2pm on Sunday 1 May at Trinity at Waiake, 864 Beach Rd, Waiake.
Friday 15 April 05: Last weekend we travelled north for a few days, and hiked for over two hours (about 5kms) along a beach at Ngunguru and quite a steep climb up a headland. I was a little tired after all this, but seem now to have the energy I need which is good. My haematologist is very happy with the latest blood and urine results and I feel GOOD! Practising the organ as much as I can for 1 May recital (see above.)
We have just come home from playing table tennis! Some friends had invited us to join them at the local club and tonight I played four games! I only won one game, but there are no ill effects after some strenuous exercise. JO
Anzac Day 25 April 05: Another good week with both haematologist and GP phoning to confirm good progress from blood tests. Down to 10mg a day of morphine; started about a year ago on 200mg a day! Quite a long walk yesterday with the Church walking group, The Waiake Wanderers, at Shepherds Bush, BeachHaven. Still doing as much practice as I can for next Sunday's recital.
Tuesday 03 May 05: The organ recital went well with a full house of relations, friends, colleagues and parishioners to listen. The Mozart Orchestra played some items too. Now we're in Mt Maunganui for a few days with friends. Walked around the Mount yesterday morning, about 3kms without too much fatigue. Tomorrow we travel to Whitianga for 5 - 6 days. Now managing full-time activities, but occasionally my lower back tires as the muscles take the skeletal load. JO
Thursday 05 May 05: Off morphine today after a year! From 200mg per day leading up to the stem-cell transplant in November to nothing now is great. I have been able to reduce gradually and the withdrawal symptoms have been mostly 'restless' arms and legs. JO
Friday 20 May 05: A very good consulation with my urologist today. He was more than pleased with a non-detectable PSA reading for the prostate cancer! He thought there may be some good from the combination of the myeloma chemo-therapies and the bone-hardener I have every six weeks with the testosterone inhibiting drug I have. Anyway, very good news today! JO
Friday 27 May 05: Another good consultation yesterday with my oncologist. His smile was as wide as mine as he confirmed the PSA reading to be undetectable. It's nine months before I have to see either of these specialists again, so that's good news too!
Friday 10 June 05: A very good week this week with news that my calcium levels are now in the normal range and kidney function is also back to normal for the first time since the onset of the myeloma. There was a fear that my kidneys could have been permanently damaged by the calcium leaching. Even better news is my myeloma readings - there are two - which were quite low but increasing very slightly each month, have reduced markedly, one down by a half and the other down to a quarter of what was measured last month. As you can imagine, we're more than pleased! We're not sure, but it could be the ViaViente phyto-tonic I've been taking for a couple of months now, that has assisted. The anti-oxidants in this tonic may be doing their job in boosting my immune system. Also, a haircut has reduced my 'chemo' curls to just a few waves in my hair now! At least I've got a full head of hair again! JO
Thursday 16 June 05: Today's consultation with my haematologist was very positive with some results of very specific tests confirming last week's results. And I don't have to see him for another four months! I also have approval to travel overseas so in a month's time we're off to QLD for three weeks to visit Simon and family, catch up with friends in Noosa, holiday in Port Douglas and stay with friends at Burleigh Heads. It's great to be able to plan these holidays again and we've got some time to make up! We hope you'll all share in our good news, and we feel really great, living a normal life again. This has been helped greatly by the prayers and support from so many people, and Lynnette and I will always be very grateful. Note that I've used 'we' as Lynnette and our family have been with me through all this 24/7 and together we rejoice. I will post more news as it comes, but it may not be as often now as we trust that our lives will be back to normal for a long time.
Wednesday 06 July 05: Great news today! The test for the multiple myeloma (Bence-Jones Protein) has registered as ZERO!! So, the prostate cancer is well under control with 'undetectable' readings for the last four months, and now the myeloma appears to be disappearing too! I'm riding my excercycle 5-6kms each day in 10-12 mins at 30kph and hardly raising a sweat. Perhaps I should ride further and faster!! I'm planning another organ recital for early December.
Tuesday 23 August 05: More good news today with most of the 26 blood and urine test readings remaining in the normal range. Haemaglobin is coming up and is nearly normal, and again the prostate PSA is undetectable for the fifth month in a row. I have my three-monthly consultation with my Haematologist next month so we hope he will be pleased, as we are.
Tomorrow we leave for a week in Vanuatu, then a month in Noosa. We're making up for the holidays we missed last year!
Saturday 08 October 05: Because we have been overseas for five weeks, one week in Vanuatu and four in Noosa, no tests were done in Sept. The pleasing reading this time is the haemoglobin which is now in the normal range for the first time since the transplant. For the seventh month, the PSA count is undetectable, and the Bence-Jones test for myeloma is steady at a very low level. I'll have to drink more to lower the kidney function reading which is fractionally above normal. Any suggestions?! All in all we're very pleased and the tropical holiday has given us both some summer tan, in advance!
Please note 2pm 4 December in your diary as there will be another organ recital at Trinity, Torbay. I've chosen the programme which will include Bach, Mendelssohn, Lloyd Webber and others. This recital will be celebrating the first anniversary of my stem-cell transplant and return to health.
Thursday 13 October 05: Our three-monthly meeting with the Haematologist today confirmed that the myeloma is at a very low level, in fact with very accurate and detailed testing, the readings are virtually not discernable, so we came away with some very wide smiles, because virtually all 26 readings in the normal bands. The next clinic in late February with all three specialists will probably decide what action, if any, is to be taken apropos the prostate. In the meantime life is NORMAL again, and we're very happy! (We are also excited today as Mark returned home from Fortaleza - Brazil with the World Laser Radial Masters yachting title, for the second time!) Probably no more reports now, until Feb 06 after the clinics then, so the very best wishes to all for Christmas and a very happy New Year from Lynnette and me.
Tuesday 29 November 05: Yes, I must add this report that another six-weekly set of blood and urine test results arrived today and nearly all the readings are within the normal band again and the few that are not are so close as to consider them normal. Of particular note are the two myeloma results which have gone down, which is great! I'm practising the organ every day now for my recital on Sunday next. Enjoying this a lot, and now looking forward to a warm, fine summer and lots of time with family. May you have the same!
Wednesday 11 January 06: Today, another set of blood and urine results which are even better than the November ones. The myeloma marker has reduced again which is very pleasing and next month comes the clinics with all three specialists. A decision may be taken then as to the treatment for the prostate cancer. In the meantime, I'm going to enjoy 2006 as I hope you will too. (The organ recital went well with the Church full and people sitting on the stairs. It was great to share my music with so many friends.)
Thursday 09 March 06: Two clinics today, one with the haematologist and one with the urologist. The good news is that my myeloma readings are virtually zero now and very stable and will probably remain this way for some time, on average usually about 5-8 years. The haematologist said that this period before the myeloma returns is gradually extending as continuing research means new drugs and treatments, so that's good news. The blood haemoglobin (red) reading is now well within the normal range and the kidney function is slightly high but stable and doesn't require any treatment. All other readings are within the normal range, which is very heartening. The urologist is suggesting radio therapy treatment for the prostate and this will be confirmed in about a fortnight when I meet the oncologist. Surgery is not an option as a myeloma patient can't have blood transfusions evidently and there is a risk associated with a prostatectomy. All in all I'm very healthy and feel very normal in every way, and now at 72kgs am back to normal weight. The only problem is, being about 5cm shorter than I was, with the collapsed vertabrae, I now have a puku. This can also be put down to good eating too I think! I've chosen my music and started practising for my June organ recital and I hope to share that with family and lots of friends.
Wednesday 22 March 06: Some more good news today at my oncology clinic. The prostate cancer, although gauged at diagnosis as agressive, is what is called T1C which means it's within the organ and can be treated there with radio therapy. So I'm to have seven weeks of daily treatment at AKL City Hospital starting in about a month to six weeks time. The oncologist spoke of 'curative therapy' so here's to a cure along with no more drugs in a few months time! My next entry may be the last and will probably be after the therapy. I will always be grateful for the continuing support from so many people, friends. colleagues and relatives, who enquire about my health and are so positive with their thoughts and prayers. Thank you so much.
Saturday 01 July 06: This week saw the end of 35 daily radio therapy treatments for my prostate cancer. Because of radiologists' strikes and machine servicing, the visits to AKL City Hospital extended over two months, but the longer periods without treatment probably meant my body was able to withstand the therapy better. Fortunately the side effects were minimal with no skin burning, no diarrhea, no tiredness, but having to get up during the night for a toilet trip is not much fun in cold weather! In mid-August I see my oncologist to check that the therapy has been curative. Blood tests continue for the myeloma and it's pleasing to report that they continue to remain at ZERO!! Long may that last! Life is virtually normal again and I've been doing light jobs in the garden and around the house and importantly continue with my school visits and music technology workshops. It's like old times!! On 11 July Lynnette and I leave for three weeks of warmth in Queensland, so as I said, life IS back to normal!! Below is a photo of the radio therapy machine with one of the wonderful team of therapists, Ginny, lining my tatoo dots up with the laser beams. For each treatment I had three 13 to 16 second zaps, through both hips and lower abdomen. Note also the very fashionable 'back-to-front' hospital gown worn for treatment! With all this over, I'm now practising for my next organ recital on Sunday 17 September. You're welcome to come.
 
Monday 14 August 06: Today has been another visit to the Cancer Lodge where we attend some outstanding sessions with speakers who outline different topics to do with myeloma, stem cells, transplants and other related matters. While quite technical, it's good to know, as at today's session, what the developments are in the new drugs and treatments for myeloma.
The good news this week is the clearance of the prostate cancer after the radio therapy and I now don't have see my oncologist for six months to confirm the cure, and the myeloma continues to be in remission as it has been for many months now.
Friday 20 October 06: My meeting with the haematologist today brought more good news as all of the 29 blood and urine test results are in the normal range, except the one which the myeloma is measured by, and importantly the kidney function is now well within the normal range. The out of kilter reading is defined by a highly sensitive test and the slight downgrading is very minimal and at this stage nothing to worry about. Next month it will be two years since the stem-cell transplant and the combination of that procedure, the skill and dedication of the medical staff, as well as the wonderful support of family and friends, and our faith, have seen life return to normal and are we thankful for that!
Friday 17 November 06: It is two years this week since my stem-cell transplant and another set of results from my six-weekly tests have come in and the haemaglobin level and kidney function are both further into the normal band, the prostate PSA is undetectable again and the myeloma reading dropped from 0.2 to 0.1 which is great too. So all in all, I'm in great shape and looking forward to the summer.
Friday 19 January 07: Today I had my three-monthly checkup with my haematologist. The kidney function is slightly outside the normal range again, so I have to drink more! Also with the highly sensitive electrophoresis reading of the myeloma there is a slight trend upwards which will have to be dealt with sometime soon, probably with Thalidomide. This may induce neuropathy, which is a tingling or numbness in the fingers and toes, and I won't look forward to that, so here's hoping this treatment isn't required for a long time yet. If the older conventional Bence-Jones myeloma readings were used I would be considered to be in remission, but one must be grateful for the more accurate results so that treatment can be started sooner with better results in containing the myeloma progression at least for a time. As a result of Christmas food and a number of wedding anniversay celebrations and birthdays, over-eating and a much shortened spine have created a new shape for me, one which I'll have to do something about, and soon!
Saturday 03 March 07: I had a visit to my oncologist a couple of weeks ago and he confirmed the prostate has responded to the 35 days of radio therapy treatment and all is well there. My next set of blood tests is in a couple of weeks and we'll see how the myeloma is then. Yes, I've lost about 5kgs as a result of minimal eating, but another three or so kgs to go! Had my first swim in the sea for three years the other day as I'm not so embarrassed with my body shape now! I continue to feel quite normal in every way and I'm not on any drugs, but do believe the ViaViente tonic I'm taking is very helpful in maintaining high energy levels as well as very good general health.
Saturday 21 April 07: Yesterday, a very important visit to my haematologist, and as a result of a recently fractured rib, along with a further relapse in the myeloma readings, it was decided to re-commence the bone-hardening with a new drug called Aredia and start on the Thalidomide treatment. It is hoped thatwith both of these there will be less chance of more bone fractures and also the Thalidomide will prevent the increase, or even reduce the myeloma progression. There are a number of side effects which are worrying, the main one being neuropathy, which is a numbness and/or tingling in the fingers and toes. Others include drowsiness, constipation, skin rashes and water retention, but not everyone suffers from any or all of these, so here's hoping that the theraputic effects outway all the other side-effects! Good readings this month for the kidneys which are back in the normal range again, and also my haemoglobin is quite high now so I have lots of energy. That's good as we're starting to look foward to a month's hiking with a group on a guided tour of the Kimberleys and the Gibb River Rd area in NW Western Austraila in June. More travel after that - Rarotonga in August, and back to Noosa house-minding in September. Life's never dull!
Tuesday 29 May 07: The latest results are in and the news is not so good this time with the myeloma progressing quite aggressively. I've been on the light dose of Thalidomide treatment for a month and sadly it had no therapeutic effect at all, in fact the disease readings have doubled since the last review. We leave for our Western Australian - Kimberleys hiking holiday tomorrow and I feel very well with few side effects from the medication other than a 'woolly' head. As I've virtually never had a headache in my life, having a heavy head is little different. My haematologist has set me up with a steroid for our trip but when I get home, it's probably back onto chemo-therapy. My blood readings are all in the normal range and he says that's good news. My next checkup is in July so here's hoping the results are more positive then. Please keep in touch as our friendships are very important to us as is the support we receive from you all.
Friday 29 June 07: This morning, at the clinic with my haematologist, it was decided that the third stage of treatment would commence. It will entail up to six episodes of chemotherapy along with continuing bone-hardener medication. This will mean up to four hours at North Shore Hospital each time as both are administered intravenously. I'll probably lose my hair again, so in this colder weather I'll have to find my woollen beanies again! Our recent Western Australian tour in the Kimberleys was quite different to any other holiday we've had and just marvellous with some very different experiences.. Now we look foward to a couple of weeks with family in Rarotonga in August and fortunately my treatment will fit in to our holiday plans. We continue to live every day to the full and I feel very good in myself with most of my blood readings continuing in the normal range.
Friday 24 August 07: This month's blood readings are again in the normal range and kidney function is also still fine. The third-stage chemotherapy appears to be holding the myeloma in check. My haematologist, at clinic yesterday, seems very happy that we're able to use this older, milder form of chemo called PEP, which doesn't have too many side effects, other than losing my hair again! The steroid component hypes me up for four days, then the ensuing few days are not so nice - I now know what drug withdrawal symptoms are like! Our holiday in Rarotonga was disappointing for the family as we had only three tropical days out of 13. The others were rather cool and windy with showers, but we hired three motor-scooters and had fun 'scooting' around the island and visiting various places. Now it's off to QLD house-minding for the month of September. As you see, we're travelling lots, and doing as much as we can while my health is holding up.
Wednesday 29 August 07: Today my oncologist has given me a year's clearance before I see him again for a prostate check. My PSA reading is virtually undetectable and the physical check confirmed that the prostate was normal, so that's good news as we leave for our month in QLD.
Thursday 04 October 07: We are very excited today as my haematologist said he's 'very pleased' with my body's reaction to the latest chemo treatment which includes Cyclophosphamide, Tenopiside and Dexamethasone. As well I have Aredia which is a bone-hardener to alleviate the wasting of the bones from the myeloma. The names alone should scare away any rogue cells! The myeloma readings are way down and so I have one more chemo/bone-hardner treatment next week, and only one more after that! He believes that this should hold things at bay for quite a while and he confirmed there are new treatments and combinations of drugs which are now more successful in preventing the advancing of myeloma to come in the future if/when I may need them. Our Sunshine Coast month's house-minding was great with the weather really coming right after the first week. With this very good result of my treatment, we're already planning more travel! PS I haven't lost all my hair this time; just a bit thinner than usual!
Friday 02 November 07: It's hard to believe but next week it will be three years since my stem-cell transplant. More good news on Tuesday as my kidney readings are the best they've been for a long time and the myeloma marker is down even further. The cumulative effects of the chemo are not that pleasant but with only one treatment to go, I'm sure by Christmas time I'll be on top again. Frustration sets in sometimes as I'm so limited physically now and can't do much around the house and section for fear of more bone fractures. My hair is very thin too, but I haven't lost it all as last time, and it will probably grow back again. I wonder if it will be curly again!
Below is a photo of Jocara, an Orams 52' ocean-going yacht, which Mark and Renee have bought a half-share in. We're now looking foward to some cruising from time to time with the family, both around the Bay of Islands and Hauraki Gulf over this summer, and in the Vavau's (Tonga) and Yasawa's (Fiji) during next winter.
Thursday 29 November 07: Had the last of four IV chemo and bone-hardner treatments at Nth Shore Hosp on Tuesday and I finish my 18 pills a day on Sunday. Then it's the withdrawal symptoms for a few days which are not too nice. My hairdresser says my hair is starting to regrow, so I'm pleased about that, not that I lost it all this time! News a few minutes ago (0530 QLD time) that Mark and his crew have left Cairns in Jocara - photo below - and anticipate their arrival at the Bay of Islands about mid-December, some 2000nm later. We're very excited about some cruising with Mark and family as mentioned in 2nd Nov report.. Very busy with a Church Choir of 27 preparing a David Hamilton song-cycle The Road to Bethlehem for the pre-Christmas Service on 16th Dec.
Friday 18 January 08: Yesterday at the clinic with my haematologist he said he was 'very pleased' with how this last treatment with PEP chemo has now held the myeloma at bay. We're hoping it will stay this way for a long time, andI now don't have to see him again for three months!
In a couple of weeks it's four years since the first symptoms of the cancer appeared and considering many myeloma patients succomb within the first year or two, I'm doing just fine. This is thanks to so many prayers and the support from Lynnette and all my family and friends, having faith in my wonderful health practitioners, and I'm sure, having an attitude which assists me to live every day positively and to look foward to the next one! Lots of plans for 2008 for us, and I wish you the best for this new year too.
PS My hair is growing back and with some waves too!
Saturday 01 March 08: Good results this week from my blood and urine tests, some 29 of them, so the four chemo treatments from late last year are doing their stuff. All results are in the normal bands except the ones which have always been out of kilter with the myeloma, and they're relatively stable. We've just returned from Terrigal, NSW, where Mark won the World Masters Laser Radial title for a third time, and then an exciting weekend at the Palm Nth Teachers' College 50th Reunion for Lynnette's year. Life's good for us, as we hope it is for you too!
Thursday 01 May 08: My clinic with haematologist David today, was very pleasing indeed as it's over three months since seeing him. Everything is very stable at the moment, so much so I don't have to meet him again for another three months. No medication either! Recently Lynnette and I went on two 7-8km walks in the National Park area on consecutive days, so energy is no problem. Just have to watch out for winter infections. Last month I had a sqamous cell carcinoma about the size of a bird's egg removed from the area of my right ham-string. Evidently having chemo treatments makes one susceptible to these things, so a careful watch is being kept on my skin and I'm not supposed to get sunburnt. Not much chance of that now, in the winter! I feel really good all the time, and we've booked air tickets for mid-July to explore far north Queensland.
Friday 04 July 08: I had a clinic with my haematologist yesterday. It was to have been in late August, but because the latest blood results showed an increase in the myeloma cells he called me in early to discuss what treatments could be considered. Fortunately all my blood readings are in the normal range and kidney function is where it's always at, at the top of the normal range, so these results are all to my advantage. There's a possibility that I could be included in a clinical trial of a new drug which is not funded in NZ, but being accepted will depend on the research team deciding if I've had too many treatments already, or perhaps I may be too old. We're hoping, because the cost to buy the drug is some many thousands per month for six months! After that the drug company supplies free. Whatever, it seems I'll initially be on Melphalan and Dexamethazone for nine months and a close check will be made on how this regime controls the myeloma. This will be in pill form for four days every six weeks, and I won't lose any hair either! After this there are a number of other drug treatments available, the expensive one being a possibility if I'm not selected for the trial.
It's with sadness I report the passing of my dear 'buddy' Pat, who with husband Don, have been so very supportive of us over the last four years. Pat had her stem-cell transplant nine months before me, and a wonderful friendship has developed since my diagnosis. We'll miss her terribly, but it's now our turn to support Don.
Friday 22 August 08: The first treatment cycle of Melphalan and Dexamethazone has dragged the light-chains readings down considerably which my haematologist is very happy about, as we are. At today's clinic it has been decided to add Velcade, a new drug, to the mix. I start this treatment next Tuesday with further injections on Friday and the next Tuesday and Friday. This cycle is to happen at the hospital every six weeks and high hope is held out for a reduction in the cancer cells. I have been fortunate in that I have been granted free access to this very expensive new drug which costs $2800 per vial, and one of these would be used each cycle! During the latter half of July we toured the far north of QLD and we're going back there mid-September to see our brand-new grand-daughter in Brisbane. Anything to get out of NZ's winter eh!
Saturday 20 September 08: The good news yesterday was the specific and highly sensitive reading (Serum-free Light Chains) has been reduced from 252 to 107 with the first cycle of treatment with Melphalan, Velcade and Dexamethazone. More cycles are planned and here's hoping that the myeloma will be reduced each time.
Currently we're in Queensland to see our newest grand-daughter, Tarlia, who is just a month old. It's great keeping in touch with our Ozzie family.
We continue to have support from so many people who care for us and we appreciate the positive thoughts, prayers and continuing contact from so many.
Friday 07 November 08: A thorough discussion with my haematologist at clinic today and the chemo treatment is to continue but 'tweaked' as the myeloma readings are not reducing as expected, although at a low level and relatively stable. The good news is I'm to be included in a trial of a new drug Lenolidomide (Revlimid) sometime soon, and this is showing good results in other overseas tests. It's very expensive, so I'm fortunate to be included in the trial, free of any cost.
Our QLD holiday was very enjoyable with three weeks of beautiful weather, and now we're home hoping for similar sunshine and warmth here.
Friday 21 November 08: Ealier this week the specfic myeloma test results showed that the cells reading had about halved after the last chemo session, so that's pleasing. Today was the first day in a new round of chemotherapy with 21 pills with breakfast and a visit to North Shore Hospital to receive the I-V component. The blood readings are particularly good too with reds, whites and platelets all well within the normal bands. I'm on twice the steroids for four days for each of two weeks this time, so I'm going to have a sleeping pill each night beforehand, otherwise I'll be dancing on the ceiling!
A busy time of the year with end-of-year concerts and rehearsals with the church choir of 25 preparing a cantata for services on 21st December.
Wednesday 17 December 08: On Saturday evening 6th I had a quick ambulance trip to North Shore Hospital with severe internal bleeding. During my eight-day stay in Ward 8, I received 12 units of blood as well as platelets and plasma, vitamin K and antibiotics, and after camera inspections through the 'front' and 'back' doors, no bleeding site was found. It is now thought that the chemotherapy treatments over the last four years may have damaged some blood vessels which may bleed from time to time. Soon, as an outpatient, I'm to have a pill-cam to take photos as it passes through me! The wonders of modern technology! Although sedated, I was able to watch the colonoscopy on the tv screen. I've also seen a photo of the inside of my stomach!
The hospital stay was enlightening, and the professionalism, teamwork and support of each other by the nursing and professional staff was most impressive. They are very skilled and dedicated people. It's certainly a multi-national place and I had contact with doctors, nurses and specialists from NZ, Saudi, China, Holland, Egypt, Ireland, India, Russia, UK and the Pacific Islands.
The GOOD NEWS of this week is the myeloma marker has been reduced from over 300 mid-year to just 25 now! This latest round of chemo (Velcade, Cyclophosphamide and Dexamethazone) appears to be doing the job! May have another cycle in January to further reduce the disease.
Lynnette and I continue to be so grateful for our circle of 'carers and prayerers' who support us in so many ways. We thank you all sincerely.
With best wishes to all for this Christmas Season -
Thursday 15 January 09: Good news today! I don't have to see my haematologist for three months or have any chemotherapy during this time as he's very happy with how things are with the combination of Velcade, Cyclophosomide and Dexamethazone doing the trick in keeping the myeloma at bay. Further, my kidneys are in the best shape they've been for a long time and my blood readings are in the normal range.
Now we're planning our year and this will include quite a lot of travel, both within NZ and overseas to Australia and maybe further too. What a way to start the year and lots of experiences to look forward to!
In a couple of weeks time, it will be five years since the first symptoms of the myeloma appeared. A lot has happened since then, and with the skill of my haematologist, the care of the staff at the North Shore Hospital, along with the circle of support I have, I can continue living as normally as I can. My best wishes to all for 2009.
Friday 13 March 09: The blood test results today show an increase in the myeloma markers, but they are still quite low. My blood condition is good and kidneys on the margin again, so will have to drink more - water that is! I can expect another round of chemo after I see my haematologist in mid-April so here's hoping that it will do the job again. We're looking forward to a fortnight in the South Island to view the autumn colours late in April. More news after my next clinic.
Monday 06 April 09: Last Thursday I had an interview with my haematologist and a specialist nurse so I could be included in a clinical trial of a very new drug, Lenalidomide, sometimes callled Revlimid. After the interview, a series of base-line tests was taken, an ECG, eight blood samples, heart and lungs checks, height, weight, blood pressure, thyroid function and lymph glands check, and the bad bit, a bone-marrow and bone biopsy. This biopsy is to extract both bone-marrow and a sliver of bone for gauging the extent of the myeloma, and it was taken from the hip-bone via some implement which I was told I didn't need to see! Fortunately I was lying on my side and the doctor and nurse carried out the procedure unseen behind me! The local anaesthetic deadened most of the procedure, but the aspiration was not a very pleasant feeling just the same. Tomorrow I take in to hospital a 24hr urine sample and have a complete skeletal survey by x-ray. I then receive the array of drugs which will be taken over the next four months, the duration of the trial. There are a number of side-effects listed, but none appears to be serious like the loss of hair or peripheral neuropathy, numbness in the fingers and toes. I can expect some insomnia from the steroids and I have to take an aspirin a day to ensure less risk of blood-clots. Care will also have to be taken to avoid any infection, as the chemo affects the immune system markedly.
To be included in this trial I'm very fortunate indeed, as the drug costs tens of thousands of dollars otherwise. Also I am glad to be part, so that any advantages of this new drug can help other myeloma patients in the future.
Monday 13 April 09: The new regime of chemotherapy started on Thursday last, and already the steroids have caused a gross lack of sleep! Other than a listlessness because of this, not much else appears to be happening yet, but I'll have weekly blood and urine tests to keep a track of the critical cell counts. The most amazing detail is, each Revlimid pill I take, and there are three per day for 21 days in each month, cost $350 EACH!! The total cost of the four months treatment is well over $60,000 and this cost is born by the drug company. My haematolgist has included me on this clinical trial to see if this new lower-dose treatment is effective. Can I say how fortunate I am to be included in this trial!
More news as the trial progresses.
Thursday 04 June 09:
Quite a long clinic today after the completion of cycle two of the trail and there were many blood and lung checks as a result of a winter cold I've had over the last week or so. So more pills to add to the list, antibiotics to assist the compromised blood whites - the infection fighters - which are taken down by the chemo.
The good news is that cycle one treatment has descreased the critical reading from 780 to 600 and next week cycle two results will be available which I'll post here. Being on a trial means that every pill taken and every associated event, ie sleeping, toileting, side-effects, demeanor etc have to be recorded. Who cares about this chore, if the results are positive and the first signs are, they will be!
We thank all of you who keep us in your prayer circle and for those who enquire regularly as to how we're going. Lynnette of course is under more stress, particularly when something untowward happens such as my severe internal bleeding before Christmas time, and now the cold which has caused some nervous moments with serious temperature spikes, almost necessitating another hospital visit.
Onward and upward!
Wednesday 12 Aug 09: Not so good news today at my clinic, as the four-month Revlite trial of the new chemo has not been successful, and my haematologist has decided to give me a month's break from any drugs, then it will be back to an older chemo, one which I've had before, so some big decisions to be made when the time comes. I continue to think positively and it will be great to be off drugs for the next month or more..
I also had an annual prostate checkup this month and everything is normal there, except having to visit the toilet during the night now.
Friday 25 September 09: More bad news today as the last blood tests have shown an increase in the critical serum-free light-chain with readings jumping from around 500 to 2800 in seven weeks which means the myeloma is rampant again. The seven weeks of all medication has been good, but when we get back from our whale-watching holiday in the Vava'u island group in Tonga with Mark and family I start on chemotherapy again. This time is will be an older Pharmac funded one I've had before, but unfortunately second-time around chemos don't usually do much for very long, but we'll see. If this PEP, it's name, is not successful then it's on to one which was quite successful last time around. It's a non-funded one called Velcade and costs $1000 a month. We're going to ask if there's any possibility of getting it on compassionate grounds as last time, so here's hoping. I'm feeling fine except the steroids won't let me sleep so I'm watching plenty of the Black Caps cricket which currently is through the night! We're looking forward to the holiday for sure.
Recently Lynnette had driver turn right in front of her, and he crashed into her car. She is now having physio three times a week to relieve back pain. Life's never dull! Her car was not badly damaged and the other driver admitted liability. The repair is perfect.
We still have tremendous moral and prayerful support from so many people and we're very grateful for that. More after my next clinic on 23 October.
Friday 23 October 09: A physical examination of my body and an x-ray of my arms today confirmed the presence of a lytic lesion in my right humerus, the upper arm bone. I had had some severe bone-pain for two days - 8/10 - which led to the examination. Fortunately the lesion hasn't entered the bone cortex so my haematologist has set up a radio-therapy series which he thinks should deal to it OK. As outlined in the summary above, the clinical trial of the new chemo wasn't effective for me at all, so I've started on a chemo I've had before. It consists of Dexamethasone, a light dose this time, so the withdrawal won't be near as bad as other regimes, and Cyclophosphamide. Both are in pill form so I don't have to visit the hospital for any infusions this time. My next clinic is in six weeks time, so here's hoping the myeloma readings will reduce over that time. Now the pain has gone, probably as a result of the steroids, I feel so much better, back to normal one might say. It's very noticeable what pain does to lower one's well-being.
Our holiday in the Vava'u Island archipelago, Tonga, was amazing. Mark was doing some research for the Tonga Tourism Ministry to do with the effects of whale-watching there. He needed a yacht to deliver questionnaires and to interview as many visiting yacht skippers as he could, and a 50' one was chartered, so family and Mum and Dad were invited too! What amazing snorkelling in the clear, warm water there! The coral was the best we've seen anywhere and so pristine. After the family came home to work and school, Lynnette and I stayed on in a rented house on Mafana Island for four more days. We found this house in the internet (of course!) and it was the only house there, so we had an island to ourselves. We snorkelled, kayaked, swam, walked, read, listened to music, and really a very relaxing time. The flight from AKL to Nukualofa was only 2hrs 40mins each way, and then to Neiafu, the major town in the Vava'u's, another hour in a Convair. I first flew in a Convair from Melbourne to Sydney in 1956 after attending the Olympic Games. Interestingly, the pilots told me the plane we flew on was built in 1956! Now it has been re-engined with turbo-props like Orions and Hercules, rather than the old radials. If you would like to know more details about the Vava'u's, please get in touch.
Arohanui -
Johannus Sweelinck 30 Digital Organ
My Daily Prayer: Today Lord, I need some extra strength and courage to face whatever will happen so I can go forward with confidence and hope. Be with me . . . strengthen me with your love, keep me safe in your care and give me peace.
The storms of life prove the strength of our anchor.
God promises a safe landing, not a calm passage.
If God brings you to it, He will bring you through it.
Life isn't about waiting for the storm to pass.... it's about learning how to dance in the rain.
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