Tuesday 20th July 2010 I completed my Rev-lite clinical trial cycle (28 days) for myeloma.
Test results:
The test results available indicate that I continue to respond 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.
Diabetes:
During cycle 3 I had suffered Candida which in combination with long term dexamethasone use resulted in my blood/sugar levels sky rocketing giving me diabetes type 2.
Link: Who let the dexo dogs out?
Dexamethasone increases the blood sugars. The final dexo days (17 to 20) coincided with my hospitalisation so the dexo was stopped for those four days. During cycle 4 on dexo days I control my blood/sugar levels by eating less carbohydrates and regular exercise which for me is walking. If this does not work I then will be increasing my twice daily insulin dosage.
Weight loss:
During this month I lost 7kg (15lbs) due to the Candida and diabetes, so far 1kg has gone back on. With my diabetes food recommendations now in place I don’t expect to regain much weight at all.
Pain relief:
My pain relief of Oxycontin slow release capsules has been stopped. Any pain relief will be controlled by paracetamol. There were no side effects during Oxycontin reduction but some side effect experiences after stopping completely. Mainly difficulty in getting to sleep, waves of restlessness in the arms. This reduced over 4 days and is no longer present.
Peripheral neuropathy:
During cycle 3 there has been a very small increase in my peripheral neuropathy in my feet, mainly a numbness of the soles. This does reduce during the 4th week of no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic -acid helps reduce the peripheral neuropathy symptoms.
General:
The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, no sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.
Cycle 4 has commenced including the scheduled dexo.
Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite clinical trial: end of cycle 1.
Rev-lite clinical trial: cycle 2, day 18.
Rev-lite clinical trial: end of cycle 2.
Showing posts with label pain relief. Show all posts
Showing posts with label pain relief. Show all posts
Friday, July 30, 2010
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.
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.
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.
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.
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.
Tuesday, March 3, 2009
Health update #02 3rd March 09
Today was my bi-monthly hospital consultation with my Haematologist and monthly infusion of aredia.
It is now 7 months since stem cell transplant #02. All my test results came in normal again similar to the previous update. I am a very happy chappie, humble that I have a second chance.
At the beginning of February I finished my controlled morphine reduction programme by stopping the M-elson (slow release morphine) altogether. That gave me my usual morphine withdrawal symptoms of restless legs at night for 7 nights though no mood issues this time. One of the side effects of morphine for me was drowsiness. Sleep is not as good now, our summer humidity not helping there. What I need to do is get into a regular sleep routine by going to sleep at the same time every evening, easier said than done. Distractions of blog, sport on TV, internet are a weakness for me.
My right arm is progressing well benefiting from regular exercise.
Peripheral neuropathy in my feet has not reduced. A scalp massager from the $2 shop has been added to my foot and leg massage tools and is now my number one massage aid.
I had a good talk to my Haematologist today.
He agreed that the morphine had masked the effects of peripheral neuropathy. That explains why it was increasing as the morphine dosage reduced.
Myra wanted to know how many others have had a second stem cell transplant. He said it was uncommon in NZ, about two a year at Auckland hospital. Mine was the only one in 2008. The contributing factors are stem cell availability, health, age, previous response and how active the multiple myeloma is.
Stem cell transplant #03 was raised by me. It is not feasible to harvest any more of my stem cells as the bone marrow has been damaged by the chemotherapy agent melphalan used during transplant.
Next consultation and health update will be 26th May.
It is now 7 months since stem cell transplant #02. All my test results came in normal again similar to the previous update. I am a very happy chappie, humble that I have a second chance.
At the beginning of February I finished my controlled morphine reduction programme by stopping the M-elson (slow release morphine) altogether. That gave me my usual morphine withdrawal symptoms of restless legs at night for 7 nights though no mood issues this time. One of the side effects of morphine for me was drowsiness. Sleep is not as good now, our summer humidity not helping there. What I need to do is get into a regular sleep routine by going to sleep at the same time every evening, easier said than done. Distractions of blog, sport on TV, internet are a weakness for me.
My right arm is progressing well benefiting from regular exercise.
Peripheral neuropathy in my feet has not reduced. A scalp massager from the $2 shop has been added to my foot and leg massage tools and is now my number one massage aid.
I had a good talk to my Haematologist today.
He agreed that the morphine had masked the effects of peripheral neuropathy. That explains why it was increasing as the morphine dosage reduced.
Myra wanted to know how many others have had a second stem cell transplant. He said it was uncommon in NZ, about two a year at Auckland hospital. Mine was the only one in 2008. The contributing factors are stem cell availability, health, age, previous response and how active the multiple myeloma is.
Stem cell transplant #03 was raised by me. It is not feasible to harvest any more of my stem cells as the bone marrow has been damaged by the chemotherapy agent melphalan used during transplant.
Next consultation and health update will be 26th May.
Wednesday, February 4, 2009
Health update #01 4th Feb 2009
A health update from November 2008 through to today.
18th November was my post transplant 100 day test appointment day.
All results came in within the normal range.
The main suspect IgG was at 39 in June 08 now down to 9.9
Between 7 and 16 is normal.
I am now off the slow release morphine m-elson though I had some withdrawal symptoms when I reduced the morphine. That was the second morning being off the pace, just wanted to be alone to deal with the moods and three days of restless legs at bed time tapering off over seven days.
The bone fracture at the top of my left humerus has now healed with no issues in that arm now.
The bone in my right humerus which had the lytic lesion and was rodded in October 08 has healed. It is still work in progress for total use, mainly overhead reaching and using the arm behind my back.
There has been an increase in peripheral neuropathy in my feet. That is surprising as I stopped the thalidomide which was the original cause back in May 08. The fingers are back to normal. My haematologist has assured me that no medication since then would have caused peripheral neuropathy. Symptoms are cold feet and numbness in feet and toes. It may be the high summer temperatures we are having or not using my feet enough at work. I have to wear my socks 24/7 except in the shower or on special occasions. To help myself I am taking Vitamin B+, massaging my feet and legs with a foot roller from the $2 shop and with emu oil. Myra lets me use her foot spa which leaves my feet feeling good for about two hours.
At the end of November I drove my car for the first time since last May.
I returned to work at the beginning of December starting on four hours a day for two weeks then five hours a day. In January I increased that to six and a half hours a day. No problems at work with fatigue or back pain. It’s good to be back with my work mates and having that mental stimulation, a feeling of being “normal” again.
After being force fed all the nice Christmas food I recommenced our low GI diet in the new year. My weight is stable at 68kg.
Walking one hour at a reasonable pace is no problem now. That is done both days at the weekend and at least 30 minutes on each work day.
Chemo brain has returned, forgetting names, not finishing sentences without prompts.
Glossary:
IgG: Proteins produced by plasma cells.
Peripheral neuropathy: Damage to the nerves, usually of hands and feet.
Thalidomide: A drug used to reduce the growth and survival of myeloma cells.
Haematologist: A doctor who specialises in the diagnosis and treatment of diseases of the blood, bone marrow and immune system.
18th November was my post transplant 100 day test appointment day.
All results came in within the normal range.
The main suspect IgG was at 39 in June 08 now down to 9.9
Between 7 and 16 is normal.
I am now off the slow release morphine m-elson though I had some withdrawal symptoms when I reduced the morphine. That was the second morning being off the pace, just wanted to be alone to deal with the moods and three days of restless legs at bed time tapering off over seven days.
The bone fracture at the top of my left humerus has now healed with no issues in that arm now.
The bone in my right humerus which had the lytic lesion and was rodded in October 08 has healed. It is still work in progress for total use, mainly overhead reaching and using the arm behind my back.
There has been an increase in peripheral neuropathy in my feet. That is surprising as I stopped the thalidomide which was the original cause back in May 08. The fingers are back to normal. My haematologist has assured me that no medication since then would have caused peripheral neuropathy. Symptoms are cold feet and numbness in feet and toes. It may be the high summer temperatures we are having or not using my feet enough at work. I have to wear my socks 24/7 except in the shower or on special occasions. To help myself I am taking Vitamin B+, massaging my feet and legs with a foot roller from the $2 shop and with emu oil. Myra lets me use her foot spa which leaves my feet feeling good for about two hours.
At the end of November I drove my car for the first time since last May.
I returned to work at the beginning of December starting on four hours a day for two weeks then five hours a day. In January I increased that to six and a half hours a day. No problems at work with fatigue or back pain. It’s good to be back with my work mates and having that mental stimulation, a feeling of being “normal” again.
After being force fed all the nice Christmas food I recommenced our low GI diet in the new year. My weight is stable at 68kg.
Walking one hour at a reasonable pace is no problem now. That is done both days at the weekend and at least 30 minutes on each work day.
Chemo brain has returned, forgetting names, not finishing sentences without prompts.
Glossary:
IgG: Proteins produced by plasma cells.
Peripheral neuropathy: Damage to the nerves, usually of hands and feet.
Thalidomide: A drug used to reduce the growth and survival of myeloma cells.
Haematologist: A doctor who specialises in the diagnosis and treatment of diseases of the blood, bone marrow and immune system.
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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