This is my story of my autologous stem cell transplant for myeloma at Auckland Hospital New Zealand bone marrow transplant unit December 2001. What my protocol was, how I planned it all, what my reaction was, how I coped, how I recovered and what help I can pass on to others. After a successful transplant I relapsed in 2007 and had a second transplant in 2008.
My story, my illness, my body, my medication, my transplant, others may have a different story.
At the time of my diagnose (2001) the conventional treatment in New Zealand for myeloma was chemotherapy, there weren’t the treatment options available like there are now (2009). Those considered healthy enough for a stem cell transplant had VAD followed by the transplant. Others had chemotherapy and its consequences.
My condition was serious, IgG kappa stage III with extensive bone involvement. [Test results at diagnose]. In spite of that I was considered reasonably healthy, a good candidate for a stem cell transplant, so after discussions on current and future treatment options with my medical team I chose VAD plus transplant. Natural remedies and alternate treatments were considered by me but I felt it was too late for those to be effective leaving me putting my trust in conventional treatment. Following my transplant I changed to a low GI diet, eliminated rubbish food, eliminated alcohol, increased fluids and juices, use selected vitamins, reduced stress and continued exercise to suit my condition. After a successful transplant I had six years myeloma free.
From my initial research into stem cell transplants for myeloma, I learnt that other patients had a varied reaction to their transplant experience. Some have had it easy, no major problems, able to spend a minimal time in hospital, more time at home with a short recovery period then back to work early. At the opposite end others have struggled with fatigue, nausea and vomiting, diarrhoea, mucositis, rash, fever, kidney problems, pneumonia and more. Fatigue often continuing during a long recovery period taking up to 6 months to recover. Most patients vary in between those two extremes.
Physical condition, type of myeloma, planning and preparation, personal attitude, mental toughness, and the ability to tolerate melphalan and other treatment medication all contribute.
Except for how I tolerated VAD there was nothing available to indicate to me how I would cope so my preparation was based on a worst case scenario though being an optimistic person hoped I for an easy ride.
The treatment protocol may vary in different countries and hospitals and according to a patient’s health status.
This is the first of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Here.]
Showing posts with label VAD. Show all posts
Showing posts with label VAD. Show all posts
Tuesday, July 21, 2009
Saturday, June 13, 2009
VAD for myeloma, end of fourth cycle
A summary of the end of my VAD cycle 4 (final cycle) Monday 8th October 2001, treatment for myeloma.
Another successful VAD and Aredia cycle.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
IgG at end of cycle 3 = 21.6 g/L
IgG at end of cycle 4 = 17.1 g/L
All other test results were normal.
There was no dexamethasone on this cycle.
Allopurin was stopped on day 9.
Again I suffered chemo induced nausea for 7 days with its associated disinterest in food. On day 8 I stopped the Maxolon and over the next few days my appetite increased.
During week 2 I developed a rash on my chest which cleared after 10 days. It was a fungal infection.
Bone pain had reduced considerably with no significant hot spots. My pain relief was Kapanol 10 morning and evening plus panadol every 4 hours. Kapanol will be stopped next month. Liquid morphine for break through was rarely used. I woke a few times at 5am with back pain that disappeared after panadol and a bit of moving around.
Physically I was much better, walking briskly, moving well and started gardening this month including light digging with a shovel.
A bone marrow biopsy was performed at the end of cycle 4.
Plasma 7% (June 12%)
Trephine 5% (June 10%)
At the end of cycle 4 I was considered to be in a state of stable partial remission and a discussion took place on what happens next, mainly the benefits of an autologous stem cell transplant. During VAD cycle 4 I had researched an ASCT and agreed for this to proceed.
Looking back over the 4 cycles, the first 2 were difficult with heavy nausea from chemo, continual bone pain and having to come to grips with cancer and emotions. The last 2 cycles were easier with nausea not so difficult and bone pain reducing. Dexamethasone side effects were a new experience especially the mood swings. Once I new what was happening I could cope.
I had put in place my way forward philosophy and "Team Sid", both important aspects of my myeloma survival.
My treatment option of VAD was in 2001. Treatment options for newly diagnosed myeloma now (2009) have changed.
Glossary.
Allopurin: A drug used to prevent high levels of uric acid in the body, including the increase caused by certain cancer medications.
Maxolon: Used for the treatment of nausea and vomiting associated with chemotherapy. Up to four tablets per day.
Another successful VAD and Aredia cycle.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
IgG at end of cycle 3 = 21.6 g/L
IgG at end of cycle 4 = 17.1 g/L
All other test results were normal.
There was no dexamethasone on this cycle.
Allopurin was stopped on day 9.
Again I suffered chemo induced nausea for 7 days with its associated disinterest in food. On day 8 I stopped the Maxolon and over the next few days my appetite increased.
During week 2 I developed a rash on my chest which cleared after 10 days. It was a fungal infection.
Bone pain had reduced considerably with no significant hot spots. My pain relief was Kapanol 10 morning and evening plus panadol every 4 hours. Kapanol will be stopped next month. Liquid morphine for break through was rarely used. I woke a few times at 5am with back pain that disappeared after panadol and a bit of moving around.
Physically I was much better, walking briskly, moving well and started gardening this month including light digging with a shovel.
A bone marrow biopsy was performed at the end of cycle 4.
Plasma 7% (June 12%)
Trephine 5% (June 10%)
At the end of cycle 4 I was considered to be in a state of stable partial remission and a discussion took place on what happens next, mainly the benefits of an autologous stem cell transplant. During VAD cycle 4 I had researched an ASCT and agreed for this to proceed.
Looking back over the 4 cycles, the first 2 were difficult with heavy nausea from chemo, continual bone pain and having to come to grips with cancer and emotions. The last 2 cycles were easier with nausea not so difficult and bone pain reducing. Dexamethasone side effects were a new experience especially the mood swings. Once I new what was happening I could cope.
I had put in place my way forward philosophy and "Team Sid", both important aspects of my myeloma survival.
My treatment option of VAD was in 2001. Treatment options for newly diagnosed myeloma now (2009) have changed.
Glossary.
Allopurin: A drug used to prevent high levels of uric acid in the body, including the increase caused by certain cancer medications.
Maxolon: Used for the treatment of nausea and vomiting associated with chemotherapy. Up to four tablets per day.
Labels:
Aredia,
Dexamethasone,
Morphine,
pain relief,
Part 1,
VAD
Thursday, June 11, 2009
VAD for myeloma, end of third cycle
A summary of the end of my VAD cycle 3 Monday 10th September 2001, treatment for myeloma.
My response to VAD and Aredia after the third 28 day VAD cycle was again excellent.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
IgG at end of cycle 3 = 21.6 g/L
All other test results were normal.
Dexamethasone was reintroduced in this cycle causing sleep disturbance, mood swings and bouts of hiccups. I had to use sleeping pills to get good sleep. Experienced an outbreak of acne type blemishes on the face and neck which was thought to be dexamethasone related and treated with a prescription ointment and eventually cleared.
Hair loss has thankfully stopped but dry skin and lips continued though not as bad as cycles 1 and 2.
Nausea was experienced for the first 10 days again reducing my appetite so I resumed the Maxolon. After 11 days nausea was gone, Maxolon stopped and the appetite was coming back again.
Bone pain was definitely reduced, I was more flexible, walking briskly and feeling physically stronger. The big news was I could now sleep on my sides, a big step forward for me. My slow release morphine Kapanol 20 was reduced to Kapanol 10 after week 2. For two evenings after stopping Kapanol I experienced restless legs lasting an hour while trying to sleep, a morphine withdrawal symptom. Two panadol every four hours was still continued and I only had to use the liquid morphine for break through pain 5 times this cycle.
There was some constipation during the first two weeks overcome by using Coloxyl laxative.
Work was increased to 6 hours per day.
Life was starting to get back to normal again.
My response to VAD and Aredia after the third 28 day VAD cycle was again excellent.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
IgG at end of cycle 3 = 21.6 g/L
All other test results were normal.
Dexamethasone was reintroduced in this cycle causing sleep disturbance, mood swings and bouts of hiccups. I had to use sleeping pills to get good sleep. Experienced an outbreak of acne type blemishes on the face and neck which was thought to be dexamethasone related and treated with a prescription ointment and eventually cleared.
Hair loss has thankfully stopped but dry skin and lips continued though not as bad as cycles 1 and 2.
Nausea was experienced for the first 10 days again reducing my appetite so I resumed the Maxolon. After 11 days nausea was gone, Maxolon stopped and the appetite was coming back again.
Bone pain was definitely reduced, I was more flexible, walking briskly and feeling physically stronger. The big news was I could now sleep on my sides, a big step forward for me. My slow release morphine Kapanol 20 was reduced to Kapanol 10 after week 2. For two evenings after stopping Kapanol I experienced restless legs lasting an hour while trying to sleep, a morphine withdrawal symptom. Two panadol every four hours was still continued and I only had to use the liquid morphine for break through pain 5 times this cycle.
There was some constipation during the first two weeks overcome by using Coloxyl laxative.
Work was increased to 6 hours per day.
Life was starting to get back to normal again.
Labels:
Aredia,
Dexamethasone,
Dry skin,
Morphine,
pain relief,
Part 1,
VAD,
Work
Tuesday, June 9, 2009
VAD for myeloma, end of second cycle
A summary of the end of my VAD cycle 2 Monday 13th August 2001, treatment for myeloma.
My response to VAD and Aredia after the second 28 day VAD cycle was again excellent.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
Bence-Jones protein negative, full blood count and other tests normal.
This cycle had no dexamethasone.
My hair loss this cycle was limited to the crown; my beard became patchy so I trimmed the beard back to a No1.
Nausea was experienced over the first 8 days then tapered off so I stopped the Maxolon on day 9. Following that I only had to use it on 3 other isolated days which was reflected in my appetite returning for the remaining 3 weeks.
Eyesight deterioration, dry skin and dry lips were still present though no worse than cycle 1. There were still no mouth or throat issues from chemo.
During the last 2 weeks of cycle 2 there was a noticeable reduction in bone pain. (6 to 8 weeks after initial VAD and Aredia). I was becoming more flexible and less restricted by bone pain. This was noticed when getting in and out of the car, being able to reach out and up and pick items off the floor. The liquid morphine for break through pain was used less this cycle. I was still using Kaponal 20 morning and evening plus panadol during the day. Pain was still present, over the final 2 weeks not as intense.
I had returned to work part time midway through the first cycle for 4 hours per day increasing this to 5 hours per day at the end of cycle 2. My occupation is a structural draughtsperson using CAD on a computer in an Engineering design office so there is no physical involvement that would be restricted by myeloma. Every second day I rested for 30 to 60 minutes on arriving home from work, just lying on the bed dozing or sleeping and resting my body.
Night time sleep was much better this cycle without the dexamethasone. I never had to use a sleeping pill at all. I still could only sleep on my back, the restriction there was rib pain.
I developed the first symptoms and signs of a hernia this cycle, not thought to be myeloma related.
My emotions were still up and down and it didn’t take too much for the tears to flow.
This cycle I resumed my walking for exercise, 30 minutes each day when I could and longer in the weekends, also resumed minor stretching.
My response to VAD and Aredia after the second 28 day VAD cycle was again excellent.
IgG at diagnose = 80 g/L
IgG at end of cycle 1 = 26.4 g/L
IgG at end of cycle 2 = 25.9 g/L
Bence-Jones protein negative, full blood count and other tests normal.
This cycle had no dexamethasone.
My hair loss this cycle was limited to the crown; my beard became patchy so I trimmed the beard back to a No1.
Nausea was experienced over the first 8 days then tapered off so I stopped the Maxolon on day 9. Following that I only had to use it on 3 other isolated days which was reflected in my appetite returning for the remaining 3 weeks.
Eyesight deterioration, dry skin and dry lips were still present though no worse than cycle 1. There were still no mouth or throat issues from chemo.
During the last 2 weeks of cycle 2 there was a noticeable reduction in bone pain. (6 to 8 weeks after initial VAD and Aredia). I was becoming more flexible and less restricted by bone pain. This was noticed when getting in and out of the car, being able to reach out and up and pick items off the floor. The liquid morphine for break through pain was used less this cycle. I was still using Kaponal 20 morning and evening plus panadol during the day. Pain was still present, over the final 2 weeks not as intense.
I had returned to work part time midway through the first cycle for 4 hours per day increasing this to 5 hours per day at the end of cycle 2. My occupation is a structural draughtsperson using CAD on a computer in an Engineering design office so there is no physical involvement that would be restricted by myeloma. Every second day I rested for 30 to 60 minutes on arriving home from work, just lying on the bed dozing or sleeping and resting my body.
Night time sleep was much better this cycle without the dexamethasone. I never had to use a sleeping pill at all. I still could only sleep on my back, the restriction there was rib pain.
I developed the first symptoms and signs of a hernia this cycle, not thought to be myeloma related.
My emotions were still up and down and it didn’t take too much for the tears to flow.
This cycle I resumed my walking for exercise, 30 minutes each day when I could and longer in the weekends, also resumed minor stretching.
Labels:
Aredia,
bone pain,
Dexamethasone,
Dry skin,
Exercise,
Morphine,
pain relief,
Part 1,
VAD
Sunday, June 7, 2009
VAD for myeloma, end of first cycle
A summary of the end of my VAD cycle 1 Monday 16th July 2001, treatment for myeloma.
My response to VAD and Aredia after the first 28 day cycle was excellent. IgG reduced from 80g/L to 26.4 g/L.
Reaction to VAD wasn’t too bad, the mouth and throat were OK, minor hair loss so I had it trimmed back to a No 2 not realising how much heat loss it would give. It was winter so I wore a beanie or cap all the time even in bed.
There was a minor deterioration in eyesight.
Had some constipation so used the Coloxyl laxative successfully.
I suffered hiccups for about 2 hours on 3 days early in the cycle.
Towards the end of the first cycle I started to suffer dry skin and lips so applied moisturiser and lip balm.
It was a struggle to get used to drinking 2L of fluid a day so I used a 500ml water bottle as a guide.
Concentration was down, probably the first indication of chemo brain.
Nausea was an issue very early on, so I used Maxolon all the time and experimented with ginger products. Both helped especially Maxolon but it never went away making eating a problem. Small helpings meant my food intake though reduced was maintained.
What surprised me was the number of pills I had to take in the morning. The maximum was 16 which I took in groups of 4, a new experience and a struggle for me.
Bone pain did not change, the pain relief (morphine and panadol) served its purpose well reducing a lot of pain. Still had to sleep on my back, the ribs and collapsed vertebrae were always a constant dull pain. There were sudden pockets of bone pain elsewhere that liquid morphine was used as break through pain relief.
Dexamethasone made me verbally aggressive, more abrupt and expressive. Mood swings from Dexamethasone were present occasionally during the first cycle. Sleep disturbance was a big issue so I had to resort to sleeping pills.
My response to VAD and Aredia after the first 28 day cycle was excellent. IgG reduced from 80g/L to 26.4 g/L.
Reaction to VAD wasn’t too bad, the mouth and throat were OK, minor hair loss so I had it trimmed back to a No 2 not realising how much heat loss it would give. It was winter so I wore a beanie or cap all the time even in bed.
There was a minor deterioration in eyesight.
Had some constipation so used the Coloxyl laxative successfully.
I suffered hiccups for about 2 hours on 3 days early in the cycle.
Towards the end of the first cycle I started to suffer dry skin and lips so applied moisturiser and lip balm.
It was a struggle to get used to drinking 2L of fluid a day so I used a 500ml water bottle as a guide.
Concentration was down, probably the first indication of chemo brain.
Nausea was an issue very early on, so I used Maxolon all the time and experimented with ginger products. Both helped especially Maxolon but it never went away making eating a problem. Small helpings meant my food intake though reduced was maintained.
What surprised me was the number of pills I had to take in the morning. The maximum was 16 which I took in groups of 4, a new experience and a struggle for me.
Bone pain did not change, the pain relief (morphine and panadol) served its purpose well reducing a lot of pain. Still had to sleep on my back, the ribs and collapsed vertebrae were always a constant dull pain. There were sudden pockets of bone pain elsewhere that liquid morphine was used as break through pain relief.
Dexamethasone made me verbally aggressive, more abrupt and expressive. Mood swings from Dexamethasone were present occasionally during the first cycle. Sleep disturbance was a big issue so I had to resort to sleeping pills.
Labels:
Aredia,
Chemo brain,
Dexamethasone,
Dry skin,
Fluids,
Morphine,
pain relief,
Part 1,
VAD
Thursday, June 4, 2009
My VAD treatment for myeloma
My initial treatment for myeloma in 2001 was VAD (Vincristine, Adriamycin, and Dexamethasone) and a bisphosphonate (pamidronate, Aredia). That was the conventional treatment for myeloma in New Zealand at that time especially if one was to continue on to a stem cell transplant. I had four cycles of VAD each over 28 days.
VINCRISTINE:
Vincristine is a chemotherapy drug used in combination with other drugs to treat myeloma by blocking cell growth by stopping cell division.
I was given 0.4mg of Vincristine intravenously on days 1 to 4 of each VAD 28 day cycle.
ADRIAMYCIN: Now called Doxorubicin
Adriamycin is a chemotherapy drug that is used to treat myeloma by bonding to the cancer cells DNA blocking an important enzyme and stopping divide and grow.
I was given 16mg of Adriamycin intravenously on days 1 to 4 of each VAD 28 day cycle.
DEXAMETHASONE:
Dexamethasone is a synthetic adrenocartia steroid. When used in the treatment of myeloma it can trigger the destruction of myeloma cells. I was given Dexamethasone for VAD cycles one and three on days 2 to 5, 9 to 12, and 17 to 20, taken by tablet (40mg).
Dexamethasone side effects experienced by me were sleep disturbance, verbal aggression and mood swings, all to be explained in a future posting.
BISPHOSPHONATE: Pamidronate, Aredia.
In myeloma bisphosphonate can delay and reduce the number of skeletal events and reduce bone pain. I was given 90mg of Aredia intravenously over two hours once a month. In the evening of the first infusion I suffered from a drop in body temperature, cold flushes and flue like symptoms. This continued for four days though reducing in severity daily. On subsequent monthly infusions I had no side effects. When discussing this with the hospital I was told this was a rare reaction and the remedy would have been to increase the infusion time to three hours.
In addition I was given other medication to overcome the side effects of VAD.
Allopurin: A drug used to prevent high levels of uric acid in the body, including the increase caused by certain cancer medications. High levels of uric acid may cause gout attacks, kidney stones or renal failure. 30mg tablets each morning.
Bactrim: Used as an antibiotic. 1 tablet each morning and afternoon.
Maxolon: Used for the treatment of nausea and vomiting associated with chemotherapy. Up to four tablets per day.
Zontac: Reduces the amount of acid in my stomach. Heals and prevents ulcers. 1 tablet morning and afternoon.
Tempazepan: A sleeping pill available to assist any anticipated Dexamethasone induced or any other sleep problems.
Chlorhexidine: mouthwash to be used morning and night to prevent mucositis; the inflammation of the lining of the mouth and throat which often occurs after high dose chemotherapy. From chemo day one I maintained a rigid commitment to following the recommended teeth and mouth wash process even when I did not feel like it. No mouth issues arose.
Nilstat: an oral suspension advanced mouthwash to be used only if any mouth issues deteriorate. It was never used.
Coloxyl laxative. 2 per day if required to overcome constipation. It was used occasionally.
VINCRISTINE:
Vincristine is a chemotherapy drug used in combination with other drugs to treat myeloma by blocking cell growth by stopping cell division.
I was given 0.4mg of Vincristine intravenously on days 1 to 4 of each VAD 28 day cycle.
ADRIAMYCIN: Now called Doxorubicin
Adriamycin is a chemotherapy drug that is used to treat myeloma by bonding to the cancer cells DNA blocking an important enzyme and stopping divide and grow.
I was given 16mg of Adriamycin intravenously on days 1 to 4 of each VAD 28 day cycle.
DEXAMETHASONE:
Dexamethasone is a synthetic adrenocartia steroid. When used in the treatment of myeloma it can trigger the destruction of myeloma cells. I was given Dexamethasone for VAD cycles one and three on days 2 to 5, 9 to 12, and 17 to 20, taken by tablet (40mg).
Dexamethasone side effects experienced by me were sleep disturbance, verbal aggression and mood swings, all to be explained in a future posting.
BISPHOSPHONATE: Pamidronate, Aredia.
In myeloma bisphosphonate can delay and reduce the number of skeletal events and reduce bone pain. I was given 90mg of Aredia intravenously over two hours once a month. In the evening of the first infusion I suffered from a drop in body temperature, cold flushes and flue like symptoms. This continued for four days though reducing in severity daily. On subsequent monthly infusions I had no side effects. When discussing this with the hospital I was told this was a rare reaction and the remedy would have been to increase the infusion time to three hours.
In addition I was given other medication to overcome the side effects of VAD.
Allopurin: A drug used to prevent high levels of uric acid in the body, including the increase caused by certain cancer medications. High levels of uric acid may cause gout attacks, kidney stones or renal failure. 30mg tablets each morning.
Bactrim: Used as an antibiotic. 1 tablet each morning and afternoon.
Maxolon: Used for the treatment of nausea and vomiting associated with chemotherapy. Up to four tablets per day.
Zontac: Reduces the amount of acid in my stomach. Heals and prevents ulcers. 1 tablet morning and afternoon.
Tempazepan: A sleeping pill available to assist any anticipated Dexamethasone induced or any other sleep problems.
Chlorhexidine: mouthwash to be used morning and night to prevent mucositis; the inflammation of the lining of the mouth and throat which often occurs after high dose chemotherapy. From chemo day one I maintained a rigid commitment to following the recommended teeth and mouth wash process even when I did not feel like it. No mouth issues arose.
Nilstat: an oral suspension advanced mouthwash to be used only if any mouth issues deteriorate. It was never used.
Coloxyl laxative. 2 per day if required to overcome constipation. It was used occasionally.
Labels:
Aredia,
Dexamethasone,
Part 1,
VAD
Sunday, May 24, 2009
Myeloma bone pain
My bone pain was typical myeloma bone pain, very painful and never ending.
X-rays showed extensive bone lesions all over, 3 rib fractures, one collapsed and one partially collapsed vertebrae. No wonder I was in pain.
I had great difficulty getting in and out of bed, could only sleep on my back and could barely function. Sneezing and coughing was to be avoided, too painful. Bone lesions in my hips and thighs had me hobbling along.
I knew where all the road pot holes and car park speed humps were, it was too painful to drive over them at speed.
Travelling to and from work was 12km by bus and I learnt when to brace myself to avoid pain. One evening we had a temporary driver who must have been Meatloaf’s brother as he drove like a bat out of hell. That was a painful journey.
The hospital arranged a bed support enabling me to get in and out of bed easier. My wife helped me get dressed and to shower.
My response to treatment of VAD and the bisphosphonate Aredia was excellent and as the bones healed the bone pain reduced. Later I had an autologous stem cell transplant eventually reaching the multiple myeloma plateau stage and no more bone pain.
The biggest relief was to be able to roll over in bed and sleep on my sides and to be able to twist my back when reversing my car to see where I was going. Best of all was to be able to cuddle Myra, squeeze her tight and be free of pain.
When you have myeloma bone pain it never goes away. You take the pain relief, that dulls it down but it’s always there. It can destroy the soul.
Myeloma bone pain hurts, it really, really hurts. It sucks.
X-rays showed extensive bone lesions all over, 3 rib fractures, one collapsed and one partially collapsed vertebrae. No wonder I was in pain.
I had great difficulty getting in and out of bed, could only sleep on my back and could barely function. Sneezing and coughing was to be avoided, too painful. Bone lesions in my hips and thighs had me hobbling along.
I knew where all the road pot holes and car park speed humps were, it was too painful to drive over them at speed.
Travelling to and from work was 12km by bus and I learnt when to brace myself to avoid pain. One evening we had a temporary driver who must have been Meatloaf’s brother as he drove like a bat out of hell. That was a painful journey.
The hospital arranged a bed support enabling me to get in and out of bed easier. My wife helped me get dressed and to shower.
My response to treatment of VAD and the bisphosphonate Aredia was excellent and as the bones healed the bone pain reduced. Later I had an autologous stem cell transplant eventually reaching the multiple myeloma plateau stage and no more bone pain.
The biggest relief was to be able to roll over in bed and sleep on my sides and to be able to twist my back when reversing my car to see where I was going. Best of all was to be able to cuddle Myra, squeeze her tight and be free of pain.
When you have myeloma bone pain it never goes away. You take the pain relief, that dulls it down but it’s always there. It can destroy the soul.
Myeloma bone pain hurts, it really, really hurts. It sucks.
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