Tuesday 22nd June 2010 I completed my Rev-lite clinical trial cycle 2 (28 days) for myeloma.
Test results:
The test results available indicate that I am responding well to the new treatment.
Results from other tests that take longer to complete are not yet available. My myeloma results IgG, globulin, total protein etc continue to head downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) at the end of 3 weeks of Lenalidomide puts them at the bottom of the "normal" range as expected. It is noted that Anaemia is present.
Side effects:
I have had no big reaction or side effects. This cycle 2 has been better than cycle 1 with minimal fatigue, not so sleepy, no rash, less dry skin. In cycle 1 my mouth started to feel “furry” and the bottom lip became tender about day 17. A similar thing occurred in cycle 2 but not as bad.
Dexamethasone has given me an increased appetite on some of the days I have it resulting in a 1kg (2.2 lbs) weight increase. There has been some sleep disturbance, nothing extreme enough for a sedative.
Myeloma:
My myeloma bone pain has nearly disappeared indicating to me that the treatment is working. I can now sleep on my sides, roll over in bed and see where I am going when I reverse the car. During the next cycle I will be eliminating the pain relief. That will help identify any myeloma that is remaining.
Right femur, Lytic lesion and fracture:
The fracture in the lytic lesion of my right femur is healing.
I am now walking with no crutch, walking 30 minutes regularly for exercise and walking stairs.
All my support equipment has been returned except for the crutch. I only use that if people are around me, there are stairs to climb or if the ground is unstable.
Next Tuesday I have an appointment with orthopedics to x-ray and sign off the leg.
Pain relief:
My pain relief of Oxycontin slow release capsules has been reduced during cycle 2 to 20mg morning, 10 mg evening. During cycle 3 I hope to stop the Oxycontin. Any pain relief will then be paracetamol.
Peripheral neuropathy:
I have some peripheral neuropathy from previous chemotherapy and thalidomide treatment. To reduce the symptoms I take alpha-lipoic-acid capsules and vitamin B.
During cycle 2 there has been a small increase in my peripheral neuropathy in my feet, mainly a numbness of the feet especially the soles. In week 3 I began to experience foot cramps in the morning starting about an hour before waking. An evening drink of tonic water containing quinine was recommended. The taste was Yuk so I added orange juice. Good advice as the drink eliminated the cramp.
As a test I missed the drink one evening and yes, the cramp was there the next morning.
I have now added some magnesium vitamins as well.
Constipation:
I have some constipation originating from Lenalidomide, dexamethasone and Oxycontin. To control constipation I use Laxsol laxative at morning and evening meals varying the dose as required taking more during dexamethasone days or if there is no motion for 2 days. During the fourth week of cycle 2 I used no Laxol.
General:
We have moved from the single beds downstairs to the main bedroom upstairs.
I am now driving the car.
Myra has observed that the hair loss at the two previous radiation spots for soft tissue plasmacytoma on my skull (Jan 2010) is starting to regrow. This is a pleasant surprise.
I am aiming for a return to work, initially 4 hours a day, after the right leg has been x-rayed and orthopedics say go.
Rev-lite clinical trial cycle 3 commences Wednesday 23rd June 2010.
The goal now is to continue the treatment through to end of cycle 4 when we redo all the initial tests, bone marrow biopsy, x-rays etc again to compare the beginning of treatment with the end of 4 treatment cycles.
If there is no change I get dropped off the trial. If there is improvement I can stay on indefinitely. So far there has been improvement.
Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite trial: end of cycle 1.
Rev-lite trial: cycle 2, day 18
Showing posts with label bone pain. Show all posts
Showing posts with label bone pain. Show all posts
Tuesday, June 22, 2010
Saturday, June 12, 2010
Rev-lite trial: cycle 2, day 18.
My cycle 2 of Rev-lite trial is at day 18 with some good achievements in the last 2 weeks.
There have been no problems with the trial treatment of lenalidomide and dexamethasone, less fatigue, sleeping well with the occasional extra nap when tired.
First achievement is with my fractured right femur where I have moved from using the big walker for support to using one crutch to using no crutch. I can now bear weight on the leg and only use the crutch in public to protect myself. A 30 minute walk each day is now a regular event.
Being able to walk means I can now drive the car which gives me more independence.
My main problem in showering has been fear of falling. This was overcome once I was able to bear more weight on the leg giving me confidence to shower and dry myself.
My pain relief has been reduced again, most myeloma bone pain has gone allowing me to spend time sleeping on my sides rather than only my back. To roll over from side to side in bed is bliss.
The big achievement is being able walk the stairs at home. Yesterday we moved from the single beds downstairs back to the master bedroom upstairs and into our Queen bed. The bed upstairs has a Woolrest woollen underlay between the mattress and bottom sheet. I missed the warmth it gives. Waking overnight to turn over I could feel warmer especially where my body was in contact with the underlay compared to no underlay. Best of all was sleeping with Myra next to me again.
Next achievement will be to maintain my Rev-lite trial progress, continue regaining strength and fitness and a return to work part time.
As I get better I am thinking less of myeloma, illness and myself. Now it is other things as well, signs of getting back to normal.
There have been no problems with the trial treatment of lenalidomide and dexamethasone, less fatigue, sleeping well with the occasional extra nap when tired.
First achievement is with my fractured right femur where I have moved from using the big walker for support to using one crutch to using no crutch. I can now bear weight on the leg and only use the crutch in public to protect myself. A 30 minute walk each day is now a regular event.
Being able to walk means I can now drive the car which gives me more independence.
My main problem in showering has been fear of falling. This was overcome once I was able to bear more weight on the leg giving me confidence to shower and dry myself.
My pain relief has been reduced again, most myeloma bone pain has gone allowing me to spend time sleeping on my sides rather than only my back. To roll over from side to side in bed is bliss.
The big achievement is being able walk the stairs at home. Yesterday we moved from the single beds downstairs back to the master bedroom upstairs and into our Queen bed. The bed upstairs has a Woolrest woollen underlay between the mattress and bottom sheet. I missed the warmth it gives. Waking overnight to turn over I could feel warmer especially where my body was in contact with the underlay compared to no underlay. Best of all was sleeping with Myra next to me again.
Next achievement will be to maintain my Rev-lite trial progress, continue regaining strength and fitness and a return to work part time.
As I get better I am thinking less of myeloma, illness and myself. Now it is other things as well, signs of getting back to normal.
Thursday, May 27, 2010
Rev-lite trial: end of cycle 1.
Tuesday 25th May 2010 I completed my Rev-lite trial cycle 1 (28 days).
It was good news, the test results indicate that I am responding well to the new treatment. Because of the positive results I now start cycle 2 which again is 28 days.
Link: Rev-lite clinical trial. Commenced 28 April 2010. (Opens in a new window)
Test results:
IgG, globulin, total protein etc are all heading downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) during the 3 weeks of Lenalidomide still puts them within the "normal" range.
Side effects:
I have had no big reaction or side effects.
There has been fatigue in the afternoon and some tiredness. Some mornings I have a powernap of 20 to 30 minutes which sharpens me up. If I have a fatigue rest I usually sleep and/or doze for 1 to 2 hours in the afternoon.
There has been some dry skin so we split the body into 3; arms, torso and legs, moisturising one part daily giving total body moisturising of 3 times a week. Face, feet and top of hands seem to be the worst.
Day 9 Myra noticed a rash appearing in two spots on my back middle left, not itchy. We contacted the trial nurse who said to monitor. By the next day the rash had reduced disappearing on day 11. We think it was a heat rash.
Day 15 my mouth started to feel “furry” and the bottom lip became tender. My doctor talked me through saline solution, mouthwash and regular teeth cleaning which has helped. I have always used lip balm, just had to increase the use.
Dexamethasone gave me hiccups during the first few days (1 to 4) usually during and after food. No hiccups after the second or third lot of dexamethasone days 9 to 12 and 17 to 20. Sleep was good with only a couple of days of dexamethasone sleep disturbance.
Myeloma:
The 3 soft tissue plasmacytoma on my skull have reduced about 70% in 1 cycle. (70% that’s incredible, way to go Sid, calm down, calm down.) All my myeloma friends know the feeling!
At day 1 I had bone pain at my sternum extending to my left side. Coughing was painful. That pain has reduced.
I still have rib pain middle back both sides, left side worse and general back pain, reducing just a little, still work in progress.
Constipation:
I have some constipation originating from Lenalidomide, dexamethasone and Oxycontin. To control constipation I use Laxsol laxative at morning and evening meals varying the dose as required taking more during dexamethasone days or if there is no motion for 2 days.
Myra makes sure my meals include plenty of fruit and vegetables, drink 2 Litres of fluid a day and eat Kiwifruit (Kiwi gold).
I take the constipation seriously and record my Laxsol and motions in my diary. The aim is one motion a day.
Right femur, Lytic lesion and fracture:
My leg continues to improve.
A bone fracture usually takes about 6 weeks to heal. It is 5 weeks since fracture so I can now use the leg more.
My new goal now is to be "walking" with one walking stick then move to walking normal.
Currently I am walking with the big walker so the new goal is achievable.
The other goal is to drive the car but first I have to walk.
One fear I had with my right leg was cramp from the Lenalidomide. I take a calcium and magnesium vitamin to assist that, so far no cramp.
Pain relief:
When I left hospital my dominant pain was the right femur fracture and general leg pain from the operation.
My pain relief was Oxycontin slow release capsules, 40mg morning, 30 mg evening and Oxynorm immediate release capsules. This was reduced on day 17 and 18 to 30mg and 20mg and is about to be reduced again. The dominant pain now is myeloma back and ribs. I have not used Oxynorm since day 1.
Peripheral neuropathy:
It is recommended not to take alpha-lipoic-acid on days one has Valcade.
I have some peripheral neuropathy from previous thalidomide treatment and take alpha-lipoic-acid capsules and vitamin B to reduce the symptoms. My haematologist said alpha-lipoic-acid has no interaction with Lenalidomide that he is aware of but just in case I reduced my alpha-lipoic-acid capsules from 1200mg a day to 600 a day. My decision, on reflection it should have been all or nothing. Day 23 I started to feel numb and cold feet. I have since resumed the alpha-lipoic-acid back to 1200mg per day, again my decision.
General:
Myra has returned to work after taking 4 weeks off to look after me. I certainly needed her in the first 2 weeks as I recovered from the leg rods and fracture. The second 2 weeks became a game of “what can Sid do for himself today”, a gradual process of regaining independence.
My myeloma bloggers and Lenalidomide web information have said if any problems or side effects arise from Lenalidomide it will be during the first cycle. Now I have completed cycle 1 I anticipate the worst is over and look forward to progressing through to the end of cycle 2 without incidents. That leaves me to focus on getting my right leg and walking back to normal.
Links: (Links open in a new window).
Lytic lesion right femur. Occurred April 3 2010.
Lytic lesion right femur update. April 8 2010.
Right femur fracture. Occurred April 14 2010.
Loss of independence. May 16 2010
Lytic lesion right femur update 2. May 23 2010
It was good news, the test results indicate that I am responding well to the new treatment. Because of the positive results I now start cycle 2 which again is 28 days.
Link: Rev-lite clinical trial. Commenced 28 April 2010. (Opens in a new window)
Test results:
IgG, globulin, total protein etc are all heading downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) during the 3 weeks of Lenalidomide still puts them within the "normal" range.
Side effects:
I have had no big reaction or side effects.
There has been fatigue in the afternoon and some tiredness. Some mornings I have a powernap of 20 to 30 minutes which sharpens me up. If I have a fatigue rest I usually sleep and/or doze for 1 to 2 hours in the afternoon.
There has been some dry skin so we split the body into 3; arms, torso and legs, moisturising one part daily giving total body moisturising of 3 times a week. Face, feet and top of hands seem to be the worst.
Day 9 Myra noticed a rash appearing in two spots on my back middle left, not itchy. We contacted the trial nurse who said to monitor. By the next day the rash had reduced disappearing on day 11. We think it was a heat rash.
Day 15 my mouth started to feel “furry” and the bottom lip became tender. My doctor talked me through saline solution, mouthwash and regular teeth cleaning which has helped. I have always used lip balm, just had to increase the use.
Dexamethasone gave me hiccups during the first few days (1 to 4) usually during and after food. No hiccups after the second or third lot of dexamethasone days 9 to 12 and 17 to 20. Sleep was good with only a couple of days of dexamethasone sleep disturbance.
Myeloma:
The 3 soft tissue plasmacytoma on my skull have reduced about 70% in 1 cycle. (70% that’s incredible, way to go Sid, calm down, calm down.) All my myeloma friends know the feeling!
At day 1 I had bone pain at my sternum extending to my left side. Coughing was painful. That pain has reduced.
I still have rib pain middle back both sides, left side worse and general back pain, reducing just a little, still work in progress.
Constipation:
I have some constipation originating from Lenalidomide, dexamethasone and Oxycontin. To control constipation I use Laxsol laxative at morning and evening meals varying the dose as required taking more during dexamethasone days or if there is no motion for 2 days.
Myra makes sure my meals include plenty of fruit and vegetables, drink 2 Litres of fluid a day and eat Kiwifruit (Kiwi gold).
I take the constipation seriously and record my Laxsol and motions in my diary. The aim is one motion a day.
Right femur, Lytic lesion and fracture:
My leg continues to improve.
A bone fracture usually takes about 6 weeks to heal. It is 5 weeks since fracture so I can now use the leg more.
My new goal now is to be "walking" with one walking stick then move to walking normal.
Currently I am walking with the big walker so the new goal is achievable.
The other goal is to drive the car but first I have to walk.
One fear I had with my right leg was cramp from the Lenalidomide. I take a calcium and magnesium vitamin to assist that, so far no cramp.
Pain relief:
When I left hospital my dominant pain was the right femur fracture and general leg pain from the operation.
My pain relief was Oxycontin slow release capsules, 40mg morning, 30 mg evening and Oxynorm immediate release capsules. This was reduced on day 17 and 18 to 30mg and 20mg and is about to be reduced again. The dominant pain now is myeloma back and ribs. I have not used Oxynorm since day 1.
Peripheral neuropathy:
It is recommended not to take alpha-lipoic-acid on days one has Valcade.
I have some peripheral neuropathy from previous thalidomide treatment and take alpha-lipoic-acid capsules and vitamin B to reduce the symptoms. My haematologist said alpha-lipoic-acid has no interaction with Lenalidomide that he is aware of but just in case I reduced my alpha-lipoic-acid capsules from 1200mg a day to 600 a day. My decision, on reflection it should have been all or nothing. Day 23 I started to feel numb and cold feet. I have since resumed the alpha-lipoic-acid back to 1200mg per day, again my decision.
General:
Myra has returned to work after taking 4 weeks off to look after me. I certainly needed her in the first 2 weeks as I recovered from the leg rods and fracture. The second 2 weeks became a game of “what can Sid do for himself today”, a gradual process of regaining independence.
My myeloma bloggers and Lenalidomide web information have said if any problems or side effects arise from Lenalidomide it will be during the first cycle. Now I have completed cycle 1 I anticipate the worst is over and look forward to progressing through to the end of cycle 2 without incidents. That leaves me to focus on getting my right leg and walking back to normal.
Links: (Links open in a new window).
Lytic lesion right femur. Occurred April 3 2010.
Lytic lesion right femur update. April 8 2010.
Right femur fracture. Occurred April 14 2010.
Loss of independence. May 16 2010
Lytic lesion right femur update 2. May 23 2010
Sunday, May 16, 2010
Loss of independence
When I was in hospital recently for my myeloma lytic lesion right Femur rodding and lytic lesion right femur fracture LINK I was bed ridden.
I could not use or put weight on my right leg. This left me dependent on help from other people, my independence had gone. My independence stopped at my finger tips.
It became evident what my essentials were: cell phone, radio, diary, pen, lip gel, hand wash, clean underwear and bathroom bag. All were kept in 1 drawer that I could reach or in a plastic container on top of that drawer.
Non essentials were in another drawer and cupboard out of reach to me.
I had to learn to ask for help and press the help buzzer. The nurses were good, as they said their job is to help the patients.
Physio gave me a range of exercises to do in bed several times a day mainly to get the leg working again. Towards the end of the bone fracture stay they encouraged me to get out of bed to use a walker. This was a struggle as I needed increased short term pain relief to cope with the leg bone pain. My pain relief is controlled release oxycontin tablets, 40mg morning, 30mg evening.
When I was discharged from hospital to home I was still in hospital help mode. The occupational health team inspected our home, gave me a wheel chair and a big walker, put in a ramp at the door step, increased the height of my bed and 3 seater with packers, gave me a bath board, shower chair and commode.
Myra had a serious talk to me about self help and that she could not do everything for me. She had taken 4 weeks leave from work to help me through the first cycle of the Rev-lite trial and during leg recovery. I was in a wheel chair, in pain from myeloma and the bone fracture; both gave me restricted movement. I was not helpless so we discussed what I could or could not do and set some new achievement goals.
It is now 3 weeks since discharge. The myeloma and bone pain has reduced; I can move my leg sideways where previously I could not. I am using the walker more walking 30 minutes 3 times a day along with the walker exercises. There is less restricted movement; I can get in and out of bed by myself, showering myself, drying the dishes at the sink and back in charge of the TV remote. There has been a big step forward.
I am regaining my independence.
I could not use or put weight on my right leg. This left me dependent on help from other people, my independence had gone. My independence stopped at my finger tips.
It became evident what my essentials were: cell phone, radio, diary, pen, lip gel, hand wash, clean underwear and bathroom bag. All were kept in 1 drawer that I could reach or in a plastic container on top of that drawer.
Non essentials were in another drawer and cupboard out of reach to me.
I had to learn to ask for help and press the help buzzer. The nurses were good, as they said their job is to help the patients.
Physio gave me a range of exercises to do in bed several times a day mainly to get the leg working again. Towards the end of the bone fracture stay they encouraged me to get out of bed to use a walker. This was a struggle as I needed increased short term pain relief to cope with the leg bone pain. My pain relief is controlled release oxycontin tablets, 40mg morning, 30mg evening.
When I was discharged from hospital to home I was still in hospital help mode. The occupational health team inspected our home, gave me a wheel chair and a big walker, put in a ramp at the door step, increased the height of my bed and 3 seater with packers, gave me a bath board, shower chair and commode.
Myra had a serious talk to me about self help and that she could not do everything for me. She had taken 4 weeks leave from work to help me through the first cycle of the Rev-lite trial and during leg recovery. I was in a wheel chair, in pain from myeloma and the bone fracture; both gave me restricted movement. I was not helpless so we discussed what I could or could not do and set some new achievement goals.
It is now 3 weeks since discharge. The myeloma and bone pain has reduced; I can move my leg sideways where previously I could not. I am using the walker more walking 30 minutes 3 times a day along with the walker exercises. There is less restricted movement; I can get in and out of bed by myself, showering myself, drying the dishes at the sink and back in charge of the TV remote. There has been a big step forward.
I am regaining my independence.
Thursday, April 8, 2010
Lytic lesion right femur update
My right femur is making good progress 13 days after full length rod and pins to support a lytic lesion.
There was no bone fracture so that reduced the pain. I am getting about on crutches with good rotation of the ankle, knee and hip.
The wounds are clean with no seepage.
Next Monday I visit the orthopaedic out patients for x-ray, stitches removed and examination.
The following day I have an appointment with my haematologist to review my clinical trial that never got started. The day before my leg rodding I had an MRI scan which identified a few problems that require attention. When these are addressed will have to be discussed.
My right leg needs radiation. I can’t start the trial until 4 weeks after radiation.
There was no bone fracture so that reduced the pain. I am getting about on crutches with good rotation of the ankle, knee and hip.
The wounds are clean with no seepage.
Next Monday I visit the orthopaedic out patients for x-ray, stitches removed and examination.
The following day I have an appointment with my haematologist to review my clinical trial that never got started. The day before my leg rodding I had an MRI scan which identified a few problems that require attention. When these are addressed will have to be discussed.
My right leg needs radiation. I can’t start the trial until 4 weeks after radiation.
Saturday, April 3, 2010
Lytic lesion right femur
I have been offline for 12 days, here’s why.
Sunday 21st March 2010 I was out for an hours walk with Myra. After 5 minutes I started limping. 20 minutes later I had to stop for a rest then limped slowly back to the car. We drove home where the situation got better with pain relief and rest.
Next day while off to work in the bus I developed back spasms and more pain causing me to return home for pain relief and rest. Took the next day off. The following day no improvement so phoned daystay who said come in for an examination and x-rays.
The x-rays went to radiology and orthopaedics and later that day my good news/bad news came back.
Good news was we know what the problem is.
Bad news is we are transferring you to North Shore hospital immediately by ambulance.
My right thigh bone (femur) has a pathological lytic lesion in the bottom third about to fracture. Myeloma was eating it away from the inside out. There had been no prior warning, no pain at all. I was unaware of a lesion there, this was totally unexpected.
So I was hospitalised for an intramedullary reconstruction of the right femur. Full length rod and pins.
After the anaesthetic block wore off the leg became very painful. I am home now; pain is getting less though I am still weak and tired. Movement is returning to the leg so I am starting to get around on crutches.
Sunday 21st March 2010 I was out for an hours walk with Myra. After 5 minutes I started limping. 20 minutes later I had to stop for a rest then limped slowly back to the car. We drove home where the situation got better with pain relief and rest.
Next day while off to work in the bus I developed back spasms and more pain causing me to return home for pain relief and rest. Took the next day off. The following day no improvement so phoned daystay who said come in for an examination and x-rays.
The x-rays went to radiology and orthopaedics and later that day my good news/bad news came back.
Good news was we know what the problem is.
Bad news is we are transferring you to North Shore hospital immediately by ambulance.
My right thigh bone (femur) has a pathological lytic lesion in the bottom third about to fracture. Myeloma was eating it away from the inside out. There had been no prior warning, no pain at all. I was unaware of a lesion there, this was totally unexpected.
So I was hospitalised for an intramedullary reconstruction of the right femur. Full length rod and pins.
After the anaesthetic block wore off the leg became very painful. I am home now; pain is getting less though I am still weak and tired. Movement is returning to the leg so I am starting to get around on crutches.
Tuesday, October 20, 2009
Some good news
Some good news today and a disappointment.
My Haematologist was unavailable, had the registrar instead. Valcade application has been declined by Pharmac again, more about that when I return from my holiday.
Now the good news.
August 2008 I had my second autologous stem cell transplant, early 2009 my IgG level started to rise.
After 4 months of cyclophosphamide and dexamethasone my IgG level has lowered from 24 down to 8.8 (880 USA). The normal range is 7 to 16 (700 to 1600 USA). This is the lowest it has been since first diagnose, then it was 80!!!
My bone pain and restricted movement have disappeared. I can drive to a car parking building, reach out to get my ticket pain free. When reversing my car I can twist my body and see where I am going. Road and shopping mall speed humps are now travelled at a faster speed, to hell with the suspension let’s have catch up time.
I can now run after and chase my grandchildren.
All my myeloma friends will understand what I am saying. With myeloma, when the good times are there, take them.
I feeeeel goooood.
My Haematologist was unavailable, had the registrar instead. Valcade application has been declined by Pharmac again, more about that when I return from my holiday.
Now the good news.
August 2008 I had my second autologous stem cell transplant, early 2009 my IgG level started to rise.
After 4 months of cyclophosphamide and dexamethasone my IgG level has lowered from 24 down to 8.8 (880 USA). The normal range is 7 to 16 (700 to 1600 USA). This is the lowest it has been since first diagnose, then it was 80!!!
My bone pain and restricted movement have disappeared. I can drive to a car parking building, reach out to get my ticket pain free. When reversing my car I can twist my body and see where I am going. Road and shopping mall speed humps are now travelled at a faster speed, to hell with the suspension let’s have catch up time.
I can now run after and chase my grandchildren.
All my myeloma friends will understand what I am saying. With myeloma, when the good times are there, take them.
I feeeeel goooood.
Sunday, October 11, 2009
Been too busy!
My last posting was back on September 19th. All is well, just been too busy, some of which is explained in this posting.
Chemotherapy and dexamethasone has reduced my IgG down to 10. It was decided one more cycle then reassess. What happens next? I will listen to my consultant on 20th October then present my list of my options and questions, an important day for me. There is still no decision on Valcade being funded by our health system.
Myra and I attended a Lymphoma awareness day here in Auckland put on by the Leukaemia and Blood Foundation (LBF). Survivorship was the theme, something close to my heart.
That got me motivated to ask our myeloma group co-ordinator if I could prepare and present a PowerPoint presentation for our myeloma support group on my survival from diagnose in 2001 through to the end of my initial VAD treatment. She was happy for me to do that so I chose 6 survival skills that I used which I will elaborate on in other postings. A previous posting Decision made to be a myeloma survivor was my starting point.
There were a surprising number of questions from the group on my bone pain which will be another presentation next year. Two previous postings Myeloma bone pain and Morphine for myeloma bone pain are popular search engine hits on my blog. Some one with myeloma bone knowledge like orthopaedics will talk first followed by my experience.
Work hours have increased since a mid-year downturn. I am a structural draughtsperson on a casual employment contract that suits me for health reasons. No more long hours or weekends. Work keeps me normal, my brain active and brings the dollars in. That along with more time on my religious studies has cut into blog time.
My “transplant series” has about 6 more postings to complete. That will be followed by the first plateau/remission stage, more about fun and life there.
At the end of the month we are having 2 weeks holiday (USA = vacation) so no postings then.
It’s spring here in New Zealand, warmer weather so time for vegetable garden preparation and growing. In particular money maker and sweet 100 tomatoes, spring onion, lettuce, radish, silver beet and leeks.
Have fun, be happy.
Chemotherapy and dexamethasone has reduced my IgG down to 10. It was decided one more cycle then reassess. What happens next? I will listen to my consultant on 20th October then present my list of my options and questions, an important day for me. There is still no decision on Valcade being funded by our health system.
Myra and I attended a Lymphoma awareness day here in Auckland put on by the Leukaemia and Blood Foundation (LBF). Survivorship was the theme, something close to my heart.
That got me motivated to ask our myeloma group co-ordinator if I could prepare and present a PowerPoint presentation for our myeloma support group on my survival from diagnose in 2001 through to the end of my initial VAD treatment. She was happy for me to do that so I chose 6 survival skills that I used which I will elaborate on in other postings. A previous posting Decision made to be a myeloma survivor was my starting point.
There were a surprising number of questions from the group on my bone pain which will be another presentation next year. Two previous postings Myeloma bone pain and Morphine for myeloma bone pain are popular search engine hits on my blog. Some one with myeloma bone knowledge like orthopaedics will talk first followed by my experience.
Work hours have increased since a mid-year downturn. I am a structural draughtsperson on a casual employment contract that suits me for health reasons. No more long hours or weekends. Work keeps me normal, my brain active and brings the dollars in. That along with more time on my religious studies has cut into blog time.
My “transplant series” has about 6 more postings to complete. That will be followed by the first plateau/remission stage, more about fun and life there.
At the end of the month we are having 2 weeks holiday (USA = vacation) so no postings then.
It’s spring here in New Zealand, warmer weather so time for vegetable garden preparation and growing. In particular money maker and sweet 100 tomatoes, spring onion, lettuce, radish, silver beet and leeks.
Have fun, be happy.
Monday, June 15, 2009
Bisphosphonates for myeloma
Bisphosphonates are drugs used to prevent or treat high calcium levels in myeloma.
Bisphosphonates work by “coating” the surface of your bones protecting them from the damaging effect of myeloma cells. By preventing bone destruction these drugs also help to reduce bone pain, the risk of bone fractures, hypercalcaemia (excess calcium in the blood) and strengthen the bones. Relief from bone pain improves physical activity which promotes bone strength and healing.
Bisphosphonates usually have minimal side effects; however they can cause the blood calcium to drop below normal levels causing muscle cramps or spasms. Occasionally patients may develop a fever after an intravenous infusion of a bisphosphonate. Other rare side effects include kidney damage and damage to the jaw bone (osteonecrosis of the jaw). Your Doctor may recommend a dental check up.
In New Zealand we use the bisphosphonate (pamidronate Aredia) given intravenously over 2 hours. It is available orally but not in New Zealand.
I was given Aredia monthly until my first stem cell transplant then resumed it about four months later.
The first time I received Aredia I suffered for several days the side effects of cold chills and flu like symptoms. This was also repeated at the second infusion a month later though not as bad. On the third infusion I only suffered minor flu like symptoms over night, on subsequent infusions nothing. Apparently if the infusion time is extended to 3 hours less side effects are experienced. My side effect symptoms were controlled by panadol.
Bisphosphonates work by “coating” the surface of your bones protecting them from the damaging effect of myeloma cells. By preventing bone destruction these drugs also help to reduce bone pain, the risk of bone fractures, hypercalcaemia (excess calcium in the blood) and strengthen the bones. Relief from bone pain improves physical activity which promotes bone strength and healing.
Bisphosphonates usually have minimal side effects; however they can cause the blood calcium to drop below normal levels causing muscle cramps or spasms. Occasionally patients may develop a fever after an intravenous infusion of a bisphosphonate. Other rare side effects include kidney damage and damage to the jaw bone (osteonecrosis of the jaw). Your Doctor may recommend a dental check up.
In New Zealand we use the bisphosphonate (pamidronate Aredia) given intravenously over 2 hours. It is available orally but not in New Zealand.
I was given Aredia monthly until my first stem cell transplant then resumed it about four months later.
The first time I received Aredia I suffered for several days the side effects of cold chills and flu like symptoms. This was also repeated at the second infusion a month later though not as bad. On the third infusion I only suffered minor flu like symptoms over night, on subsequent infusions nothing. Apparently if the infusion time is extended to 3 hours less side effects are experienced. My side effect symptoms were controlled by panadol.
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.
Tuesday, May 26, 2009
Morphine for myeloma bone pain
When my GP told me I had multiple myeloma my pain relief was increased to morphine. The pain I was suffering was myeloma bone pain; multiple lesions, rib fractures and compressed vertebrae.
I took liquid morphine starting at 5mls every 6 hours. It was soon apparent this was inadequate so I increased the dosage to 10mls and reduced the time interval to 4 hours to give me much better pain relief. For five days I recorded every dosage and time for my GP to determine the dosage of a morphine slow release capsule.
On Tuesday 5th June 2001 I changed from liquid morphine to a slow release morphine capsule. It was Kapanol 20, the 20 being 20 mg. Kapanol 20 was effective for 12 hours so I took one pill on awaking and another 12 hours later. Kapanol was complimented with panadol.
Liquid morphine was still available for any break through pain. Initially I took some liquid morphine at the same time as the morning Kapanol to help me get going pain free.
Liquid morphine had a sweet taste to me, a bit like apple cider, was rapid acting, pain relief was felt after 2 minutes and was effective for 4 hours.
Side effects for me were dry mouth and minor constipation. The dry mouth was overcome by drinking liquid during the day. At night I slept with a drink bottle close by to sip and moisten my mouth. My lips became dry as well so I used a lip balm, my introduction to regular use of “lippy”. Myra claimed the dry mouth along with sleeping on my back caused me to snore, I never heard it. Constipation was manageable with Kiwifruit (Kiwigold, it’s sweeter) but became worse when I was on VAD.
At the end of August 2001, 3 months after starting morphine, I no longer required liquid morphine so reduced the Kapanol 20 to Kapanol 10. That was at the end of my second VAD cycle. I was still taking panadol.
For two evenings after the reduction I experienced restless legs while trying to sleep a classic morphine withdrawal symptom.
On 15th November 2001 I stopped the Kapanol completely. Restless legs were again experienced for 2 evenings and my bowels were loose for 2 days.
Glossary.
Morphine: A drug extracted from opium used in medicine as an anaesthetic and sedative.
I took liquid morphine starting at 5mls every 6 hours. It was soon apparent this was inadequate so I increased the dosage to 10mls and reduced the time interval to 4 hours to give me much better pain relief. For five days I recorded every dosage and time for my GP to determine the dosage of a morphine slow release capsule.
On Tuesday 5th June 2001 I changed from liquid morphine to a slow release morphine capsule. It was Kapanol 20, the 20 being 20 mg. Kapanol 20 was effective for 12 hours so I took one pill on awaking and another 12 hours later. Kapanol was complimented with panadol.
Liquid morphine was still available for any break through pain. Initially I took some liquid morphine at the same time as the morning Kapanol to help me get going pain free.
Liquid morphine had a sweet taste to me, a bit like apple cider, was rapid acting, pain relief was felt after 2 minutes and was effective for 4 hours.
Side effects for me were dry mouth and minor constipation. The dry mouth was overcome by drinking liquid during the day. At night I slept with a drink bottle close by to sip and moisten my mouth. My lips became dry as well so I used a lip balm, my introduction to regular use of “lippy”. Myra claimed the dry mouth along with sleeping on my back caused me to snore, I never heard it. Constipation was manageable with Kiwifruit (Kiwigold, it’s sweeter) but became worse when I was on VAD.
At the end of August 2001, 3 months after starting morphine, I no longer required liquid morphine so reduced the Kapanol 20 to Kapanol 10. That was at the end of my second VAD cycle. I was still taking panadol.
For two evenings after the reduction I experienced restless legs while trying to sleep a classic morphine withdrawal symptom.
On 15th November 2001 I stopped the Kapanol completely. Restless legs were again experienced for 2 evenings and my bowels were loose for 2 days.
Glossary.
Morphine: A drug extracted from opium used in medicine as an anaesthetic and sedative.
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.
Thursday, April 16, 2009
First hospital appointment
My first appointment at Auckland hospital (June 2001) was to have tests to confirm that I had myeloma. At 53 years of age I had led a healthy life style until myeloma appeared, the hospital system was a new experience for me. Suffering bone pain at the time with its associated limited mobility I turned up feeling rather apprehensive.
Lots of questions were asked of me followed by a physical examination, blood tests, x-rays and bone marrow biopsy. At the end of day there were no answers though an acknowledgement that there was an 80% chance of my illness being myeloma. Answers would be revealed the following week.
A positive was meeting and dealing for the first time with a medical team at haematology that set a high standard from day one. Being new to the system I had a large number of questions that were answered diligently, I was impressed.
Leaving hospital my apprehension had disappeared. I felt in good hands while needing to discover how I could respond to be a pro-active patient. Being a passive patient was not good enough for me.
Lots of questions were asked of me followed by a physical examination, blood tests, x-rays and bone marrow biopsy. At the end of day there were no answers though an acknowledgement that there was an 80% chance of my illness being myeloma. Answers would be revealed the following week.
A positive was meeting and dealing for the first time with a medical team at haematology that set a high standard from day one. Being new to the system I had a large number of questions that were answered diligently, I was impressed.
Leaving hospital my apprehension had disappeared. I felt in good hands while needing to discover how I could respond to be a pro-active patient. Being a passive patient was not good enough for me.
Tuesday, April 14, 2009
There's a rat eating my hand
A work colleague at the time of my DVT was Richard whose wife is a doctor. Richard is a good husband who listens to his wife so has gained an above average knowledge of medical matters.
Richard said to me “Sid, you are taking warfrin. Do you realise that warfrin is a rat poison?”
“No” I said. “That’s great, I am being stuffed full of chemo and now they give me rat poison”.
That night while sleeping Myra heard me making strange noises, trying to talk and becoming distressed. At that time I was on morphine for pain relief and suffered a morphine side effect of a dry mouth. Because of bone damage I could only sleep on my back which gave me a tendency to sleep with my mouth open that also gave me a dry mouth. I woke with a very dry mouth, so dry I could not talk, just gasp and grunt like an animal. Myra got out of bed to find my water bottle, gave me water to moisten my mouth and tried to calm me down.
Distressed I said to her "There’s a rat eating my hand, there’s a rat eating my hand”.
Myra looked at my hand and assured me that there was no rat and my hand was still intact and uneaten.
Continuing I said “It must be somewhere, look under the bed”.
Myra looked under the bed. “No rat there” she said.
I have a vivid imagination and often have dreams, usually a good dream rarely a bad dream. My arm was out of the bed on a strange angle causing my hand to suffer pins and needles. This put my subconscious into overdrive. Warfrin, rat poison, pain in hand, I dreamt that there was a rat eating my hand. It was scary at the time, now a good laugh.
Who said there’s no fun having cancer?
Glossary.
Morphine: A drug extracted from opium used in medicine as an anaesthetic and sedative.
Richard said to me “Sid, you are taking warfrin. Do you realise that warfrin is a rat poison?”
“No” I said. “That’s great, I am being stuffed full of chemo and now they give me rat poison”.
That night while sleeping Myra heard me making strange noises, trying to talk and becoming distressed. At that time I was on morphine for pain relief and suffered a morphine side effect of a dry mouth. Because of bone damage I could only sleep on my back which gave me a tendency to sleep with my mouth open that also gave me a dry mouth. I woke with a very dry mouth, so dry I could not talk, just gasp and grunt like an animal. Myra got out of bed to find my water bottle, gave me water to moisten my mouth and tried to calm me down.
Distressed I said to her "There’s a rat eating my hand, there’s a rat eating my hand”.
Myra looked at my hand and assured me that there was no rat and my hand was still intact and uneaten.
Continuing I said “It must be somewhere, look under the bed”.
Myra looked under the bed. “No rat there” she said.
I have a vivid imagination and often have dreams, usually a good dream rarely a bad dream. My arm was out of the bed on a strange angle causing my hand to suffer pins and needles. This put my subconscious into overdrive. Warfrin, rat poison, pain in hand, I dreamt that there was a rat eating my hand. It was scary at the time, now a good laugh.
Who said there’s no fun having cancer?
Glossary.
Morphine: A drug extracted from opium used in medicine as an anaesthetic and sedative.
Thursday, January 29, 2009
Pre diagnose
From about October 2000 I began experiencing back pain. My Doctor thought it was related to a back injury I suffered 12 months earlier so sent me to a physiotherapist for treatment. I agreed with his assumption, it seemed logical. The physiotherapist recommended back and stomach strengthening exercises which gave an initial improvement. Eventually the pain returned so I was sent off to an osteopath. Not much joy there, on reflection I am disappointed that the Osteopath did not detect multiple myeloma, after all they are bone and muscle experts.
The bone pain was increasing in my back, ribs and now my thighs. Getting in and out of bed was a mission, I could only sleep on my back and barely raise my head off the pillow.
Driving the car was becoming more difficult, it hurt getting in and out of the car and I could not twist my back to look where I was going when reversing.
I was on pain relief, Panadol and Paradex, which did help though it masked the problem.
At that time I was medically naïve, not proactive and very optimistic, “it will be better next week” I used to say. My multiple myeloma journey has taught me to remain optimistic, become more proactive and up skill on medical matters. Now, nothing is taken for granted.
My wife and I attended a Country Rock festival where I heard a joke from a performer Dennis Marsh about a jockey, plumber and a bed. It was hilarious, can’t remember it now, (chemo brain?), so hilarious I laughed so much I broke two ribs.
That triggered action from me, my GP and my medical insurer. Tests and x-rays were done and it was confirmed I had a cancer, multiple myeloma.
On June 1st 2001 my multiple myeloma journey began.
The bone pain was increasing in my back, ribs and now my thighs. Getting in and out of bed was a mission, I could only sleep on my back and barely raise my head off the pillow.
Driving the car was becoming more difficult, it hurt getting in and out of the car and I could not twist my back to look where I was going when reversing.
I was on pain relief, Panadol and Paradex, which did help though it masked the problem.
At that time I was medically naïve, not proactive and very optimistic, “it will be better next week” I used to say. My multiple myeloma journey has taught me to remain optimistic, become more proactive and up skill on medical matters. Now, nothing is taken for granted.
My wife and I attended a Country Rock festival where I heard a joke from a performer Dennis Marsh about a jockey, plumber and a bed. It was hilarious, can’t remember it now, (chemo brain?), so hilarious I laughed so much I broke two ribs.
That triggered action from me, my GP and my medical insurer. Tests and x-rays were done and it was confirmed I had a cancer, multiple myeloma.
On June 1st 2001 my multiple myeloma journey began.
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