Tuesday 17th August 2010 I completed my Rev-lite clinical trial cycle 4 (28 days) for myeloma. Trial protocol states that after 4 cycles the status of my disease will be reassessed. If my disease has become worse the trial will stop. If my disease has shown improvement I remain on the trial.
My disease has improved allowing me to remain on the trial.
From cycle 5 onwards the Lenalidomide dosage remains at 15mg for 21 days then 7 days free. Dexamethasone dosage remains at 20mg but only given for the first 4 days. For cycles 1 to 4 dexamethasone was 4 days on 4 days off for 21 days; the reduction is welcomed. A daily Aspirin continues as before.
I can now remain on this trial indefinitely or until it officially ends. Reasons for me stopping the trial is complications from side effects or if there is a return of myeloma.
A skeletal x-ray has been scheduled for 2 months time.
This is very heartening news for me. After 9 years since myeloma diagnose I am virtually myeloma free again heading back to normal all thanks to Lenalidomide. For how long, can't say, that's the nature of myeloma and in the hands of God. I feel humble that I received the opportunity to participate in the trial. There are others who Lenalidomide has not worked, my heart goes out to them.
I am convinced that the lower dosage of Lenalidomide and dexamethasone is still effective and does reduce the side effects.
Cycle 4 summary:
There were no significant problems during cycle 4 other than a minor head cold and later coughing phlegm for 3 days (it is winter in NZ). During week 3 of the previous 3 cycles there was a deteriation of the mouth and bottom lip. This was not present in the mouth this time, only a minor feeling on the lip.
Bowels were generally normal, Laxol and Kiwi fruit used sometimes for constipation during dexo days.
There was only one afternoon of fatigue this cycle, though there were occasional pockets of tiredness in the late afternoon. My strength is returning after the diabetes problem allowing me to walk 30 to 40 minutes a day.
I did get some minor cramp in my feet on days 15 and 16. First time for a while even though I am taking vitamin E for cramp.
Starting in the 4th week the skin at my protaphane (insulin) needle sites became bruised or blood spots appeared. This was thought to be related to my lower platelets and the Aspirin which thins the blood. We are currently monitoring this.
There are problems with dexamethasone side effects. Refer to the dexamethasone heading below.
Overall there was an improvement on the first 3 cycles.
Test results:
Today’s results are not yet available. The test results from 4 weeks ago indicate that I continue to respond well to the new treatment.
My IgG at beginning of the trial (28th April) was 32.5 g/L (USA 3250 mg/dl) last month (20th July) 10.7 (USA 1070). Normal range is 7 to 16.
Platelets: 306 now 172.
HB: 115 now 126
RBC: 4.13 now 4.3
WBC 6.7 now 4.8
Diabetes:
Dexamethasone increases the blood sugars. During cycle 4 on dexo days I controlled my blood/sugar levels by eating less carbohydrates and walking for regular exercise. The other option of increasing my insulin did not eventuate.
To help with food shopping, cooking and eating I have created a spreadsheet which lists food item, protein, carbohydrates and sugar, a good guide.
Weight loss:
During cycle 4 my weight remained constant at 65 kg (143 lbs). With my diabetes food recommendations now in place I don’t expect to regain much weight at all.
Dexamethasone:
The accumulative effect of dexamethasone over 4 cycles and earlier in the year combined with cyclophosphomide has accentuated some side effects.
Sleep problems during dexamethasone days have become an issue, the wide awake until early morning is there. I am reluctant to take my sedative (Zopiclone) as I get withdrawl symptoms when I stop. That is sleep for 30 minutes then wake with waves of restlessness in my arms and torso for about 3 hours. I have previously used morphine based pain relief some times in high dosages: Kaponal, m-elson, and recently Oxycontin. Perhaps the Zopiclone triggers some residual Morphine still in my body creating a craving. That’s my theory.
I can be aggressive and loud in my speech, very opinionated, don’t hold back. This was a big problem during the first 2 weeks after retuning from hospital with diabetes. I was in denial and angry, not the normal me. Now that I have accepted the diabetes the anger has reduced and we have put in place some systems to down size my speech problems. There are other ways I can do stress release.
I am more emotional this cycle, the tears can flow freely out of nowhere, this maybe a combination of the dexamethasone and the diabetes trauma.
Link: Dexamethasone for myeloma.
Peripheral neuropathy:
During cycle 4 there has again been a very small increase in my peripheral neuropathy in my feet, mainly an increase in the numbness of the soles. It is present in my left hand, but not the right hand. Peripheral neuropathy does reduce during the 4th week when there is 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, avoiding 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.
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.
Rev-lite clinical trial: end of cycle 3.
Showing posts with label Peripheral neuropathy. Show all posts
Showing posts with label Peripheral neuropathy. Show all posts
Wednesday, August 18, 2010
Tuesday, November 17, 2009
Peripheral neuropathy reduction
I have been suffering from peripheral neuropathy caused by thalidomide maintenance for multiple myeloma. After stopping thalidomide the peripheral neuropathy reduced but was still present. The soles of my feet were numb (about 6/10), my feet were often cold and when cold painful, I wore my socks 24/7, I could not walk in bare feet.
To relieve the peripheral neuropathy symptoms I use a multi-vitamin B (including B1, B6, B12 and folic acid) and alpha-lipoic-acid (300mg one/day).
Recently I changed the brand and dosage of the alpha-lipoic-acid to 600mg per day, 300mg at breakfast and 300mg at dinner.
After 6 weeks I began to feel a gradual change in my feet. Now the numbness has reduced (about 2/10), my feet are rarely cold, can walk in bare feet and don’t have to wear my socks in bed.
I attribute this change to the increase in alpha-lipoic-acid.
I was prepared to increase the alpha-lipoic-acid to 1200mg/day but will stay at 600mg/day. If future treatment causes the peripheral neuropathy to return I will increase the alpha-lipoic-acid then and consider including L-carnitine and L-glutamine.
Links:
Myeloma legend Minnesota Don has made an excellent posting on his blog (myelomahope) summarising peripheral neuropathy treatment. The comment at the bottom by Habubrat on the use of alpha-lipoic-acid during chemotherapy is worth reading as well. Don has 7 other postings on peripheral neuropathy treatment found in his labels column.
David Emerson (Beating myeloma) has a good summary of alpha-lipoic-acid. It is worth searching for other peripheral neuropathy articles on his site as well.
To relieve the peripheral neuropathy symptoms I use a multi-vitamin B (including B1, B6, B12 and folic acid) and alpha-lipoic-acid (300mg one/day).
Recently I changed the brand and dosage of the alpha-lipoic-acid to 600mg per day, 300mg at breakfast and 300mg at dinner.
After 6 weeks I began to feel a gradual change in my feet. Now the numbness has reduced (about 2/10), my feet are rarely cold, can walk in bare feet and don’t have to wear my socks in bed.
I attribute this change to the increase in alpha-lipoic-acid.
I was prepared to increase the alpha-lipoic-acid to 1200mg/day but will stay at 600mg/day. If future treatment causes the peripheral neuropathy to return I will increase the alpha-lipoic-acid then and consider including L-carnitine and L-glutamine.
Links:
Myeloma legend Minnesota Don has made an excellent posting on his blog (myelomahope) summarising peripheral neuropathy treatment. The comment at the bottom by Habubrat on the use of alpha-lipoic-acid during chemotherapy is worth reading as well. Don has 7 other postings on peripheral neuropathy treatment found in his labels column.
David Emerson (Beating myeloma) has a good summary of alpha-lipoic-acid. It is worth searching for other peripheral neuropathy articles on his site as well.
Thursday, September 10, 2009
Health update September 2009
Previous update summary July 2009:
After having my second stem cell transplant in August 2008 all was going well, the 100 day tests were positive, IgG was down to normal, I was feeling good.
Then my 3 monthly tests in May 2009 showed my IgG had increased from 10 to 18, measured g/l in NZ (7 to 16 is the normal range). A month later it had risen to 22, the trend was heading up. Except for the proteins all other tests were OK.
This update September 10 2009.
IgG results: g/l (USA mg/dl)
24 Feb 2009 = 10.1 (1010)
18 May 2009 = 18.4 (1840)
16 June 2009 = 22.2 (2220)
21 July 2009 = 21.8 (2180)
18 Aug 2009 = 12.7 (1270)
Treatment:
It was decided to try to reduce the IgG early with chemotherapy before it got too high.
Valcade and Revlimide are not funded by Pharmac in New Zealand; we will try them on a trial or at a later date. A link to Valcade, Revlimide and Pharmac NZ summary is here.
Chemotherapy; cyclophosphamide (Chemo) and dexamethasone (steroid):
First 28 day cycle commenced Wednesday 1st July 2009.
Second 28 day cycle commenced Wednesday 29th July 2009.
Third 28 day cycle commenced Wednesday 26th August 2009.
Cyclophosphamide: 500mg day 1, 8, 15, 22.
Dexamethasone: 20mg day 1, 2, 3, 4 and 15, 16 17, 18.
Allopurinol: 300mg, 1 tablet per day.
Bactrim: 480mg, 2 tablets Mon/Wed/Fri.
As you can see by the 18th Aug result there has been a dramatic drop in IgG.
When taking the dexamethasone I have sleep problems for about 6 days but no other side effects. I get fatigue the day after I take the cyclophosphamide, no nausea and no other side effects. Bowels have been normal. I still have Aredia monthly.
Soft tissue plasmacytoma:
Two soft tissue Plasmacytoma developed on my skull as the IgG increased, a fine needle biopsy confirmed what they were. They were a pronounced lump, no pain or discomfort, getting larger as the IgG increased. Seven days after the chemo commenced they had reduced by 50%, at the end of the first cycle they had reduced by 80%. By the end of the second cycle they had disappeared altogether.
I have had 2 plasmacytoma in bones before when in relapse; June 2007 left humerus, October 2008 right humerus. Both required surgery for titanium rod prosthesis..
Bones:
My inflamed sternum from continual coughing in June slowly reduced, disappearing mid July. That was painful, like a knife in my chest. X-rays showed no fractures.
At the end of July I had an uncontrollable sneezing bout which fractured a rib, right side, at the back mid height. Pain relief went from Panadol to Codeine to Paradex. I had to sleep on my back for 2 weeks and movement was restricted. It took 3 weeks to start to feel comfortable again and reduce the pain relief.
The rib fracture was a reminder that there is still residual bone damage from my initial state at diagnose in 2001 and relapse in 2007/2008 and I need to be careful. The bone damage can be seen on x-rays.
Peripheral neuropathy:
Peripheral neuropathy from 14 months on Thalidomide in 2007/2008 has stayed in my feet though has reduced. Only mild, doesn’t restrict me other than having to wear socks 24/7 as my feet can get cold. To help myself I massage my feet and take vitamin B+ and Alpha-lipoic-acid.
Chemo brain:
Chemo brain from my stem cell transplant in Aug 2008 has subsided, memory is better but I still have a problem remembering names. I still write lists of things to do, work procedures and technical terms. People’s names with a word prompt are kept in a notebook. E.g. Mary Smith, lady with a limp.
General health:
General health is fine. I am working 5 days a week 9.00 to 4.30. Drinking 2 L of liquid per day, mostly water. Myra and I follow the principles of a low GI diet; beans, pulses, protein, lots of fruit and vegetables. Walk for an hour both days in the weekends and 30 minutes at least twice during the week. Currently no bone pain or pain relief or restricted movement.
Vitamins:
The vitamins I take are:
A man’s multivitamin: Mon/Wed/Fri.
Vitamin C: 250mg/day.
Cartia: 1/day to thin my blood.
Vitamin B+ complex: For peripheral neuropathy, 1 per day.
Alpha-lipoic-acid: For peripheral neuropathy, 300mg morning and evening.
Glossary:
Cyclophosphamide: Cyclophosphamide is a chemotherapy drug that is given as a treatment for many types of cancer.
Dexamethasone: Dexamethasone is a synthetic adrenocartia steroid. When used in the treatment of myeloma it can trigger the destruction of myeloma cells. My seek and destroy missile.
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.
Bactrim: Used as an antibiotic during chemotherapy.Aredia: In myeloma Aredia (a bisphosphonate) can delay and reduce the number of skeletal events and reduce bone pain.
This is one 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 [Part 2 link]
After having my second stem cell transplant in August 2008 all was going well, the 100 day tests were positive, IgG was down to normal, I was feeling good.
Then my 3 monthly tests in May 2009 showed my IgG had increased from 10 to 18, measured g/l in NZ (7 to 16 is the normal range). A month later it had risen to 22, the trend was heading up. Except for the proteins all other tests were OK.
This update September 10 2009.
IgG results: g/l (USA mg/dl)
24 Feb 2009 = 10.1 (1010)
18 May 2009 = 18.4 (1840)
16 June 2009 = 22.2 (2220)
21 July 2009 = 21.8 (2180)
18 Aug 2009 = 12.7 (1270)
Treatment:
It was decided to try to reduce the IgG early with chemotherapy before it got too high.
Valcade and Revlimide are not funded by Pharmac in New Zealand; we will try them on a trial or at a later date. A link to Valcade, Revlimide and Pharmac NZ summary is here.
Chemotherapy; cyclophosphamide (Chemo) and dexamethasone (steroid):
First 28 day cycle commenced Wednesday 1st July 2009.
Second 28 day cycle commenced Wednesday 29th July 2009.
Third 28 day cycle commenced Wednesday 26th August 2009.
Cyclophosphamide: 500mg day 1, 8, 15, 22.
Dexamethasone: 20mg day 1, 2, 3, 4 and 15, 16 17, 18.
Allopurinol: 300mg, 1 tablet per day.
Bactrim: 480mg, 2 tablets Mon/Wed/Fri.
As you can see by the 18th Aug result there has been a dramatic drop in IgG.
When taking the dexamethasone I have sleep problems for about 6 days but no other side effects. I get fatigue the day after I take the cyclophosphamide, no nausea and no other side effects. Bowels have been normal. I still have Aredia monthly.
Soft tissue plasmacytoma:
Two soft tissue Plasmacytoma developed on my skull as the IgG increased, a fine needle biopsy confirmed what they were. They were a pronounced lump, no pain or discomfort, getting larger as the IgG increased. Seven days after the chemo commenced they had reduced by 50%, at the end of the first cycle they had reduced by 80%. By the end of the second cycle they had disappeared altogether.
I have had 2 plasmacytoma in bones before when in relapse; June 2007 left humerus, October 2008 right humerus. Both required surgery for titanium rod prosthesis..
Bones:
My inflamed sternum from continual coughing in June slowly reduced, disappearing mid July. That was painful, like a knife in my chest. X-rays showed no fractures.
At the end of July I had an uncontrollable sneezing bout which fractured a rib, right side, at the back mid height. Pain relief went from Panadol to Codeine to Paradex. I had to sleep on my back for 2 weeks and movement was restricted. It took 3 weeks to start to feel comfortable again and reduce the pain relief.
The rib fracture was a reminder that there is still residual bone damage from my initial state at diagnose in 2001 and relapse in 2007/2008 and I need to be careful. The bone damage can be seen on x-rays.
Peripheral neuropathy:
Peripheral neuropathy from 14 months on Thalidomide in 2007/2008 has stayed in my feet though has reduced. Only mild, doesn’t restrict me other than having to wear socks 24/7 as my feet can get cold. To help myself I massage my feet and take vitamin B+ and Alpha-lipoic-acid.
Chemo brain:
Chemo brain from my stem cell transplant in Aug 2008 has subsided, memory is better but I still have a problem remembering names. I still write lists of things to do, work procedures and technical terms. People’s names with a word prompt are kept in a notebook. E.g. Mary Smith, lady with a limp.
General health:
General health is fine. I am working 5 days a week 9.00 to 4.30. Drinking 2 L of liquid per day, mostly water. Myra and I follow the principles of a low GI diet; beans, pulses, protein, lots of fruit and vegetables. Walk for an hour both days in the weekends and 30 minutes at least twice during the week. Currently no bone pain or pain relief or restricted movement.
Vitamins:
The vitamins I take are:
A man’s multivitamin: Mon/Wed/Fri.
Vitamin C: 250mg/day.
Cartia: 1/day to thin my blood.
Vitamin B+ complex: For peripheral neuropathy, 1 per day.
Alpha-lipoic-acid: For peripheral neuropathy, 300mg morning and evening.
Glossary:
Cyclophosphamide: Cyclophosphamide is a chemotherapy drug that is given as a treatment for many types of cancer.
Dexamethasone: Dexamethasone is a synthetic adrenocartia steroid. When used in the treatment of myeloma it can trigger the destruction of myeloma cells. My seek and destroy missile.
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.
Bactrim: Used as an antibiotic during chemotherapy.Aredia: In myeloma Aredia (a bisphosphonate) can delay and reduce the number of skeletal events and reduce bone pain.
This is one 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 [Part 2 link]
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.
Monday, January 26, 2009
Summary June 2001 to January 2009
Here is a summary of my MM story from diagnose in June 2001 to now January 2009.
I was diagnosed with MM stage III IgG kappa in June 2001. At diagnose I had extensive bone involvement including 3 fractured ribs, one collapsed vertebrae and one partially collapsed vertebra. Two weeks after diagnose I developed a DVT in my right calf which soon cleared with the help of warfrin. A DVT is not uncommon for MM patients. Initial treatment was VAD (Vincristine, Adriamycin and Dexamethasone) and the bisphosphonate Aredia and after 4 months I had a good response to both. This was followed by a stem cell collection which gave me enough stem cells for two transplants. In November 2001 I developed a retinal vein thrombosis in my right eye which was MM related. The symptoms were blurred vision which fortunately cleared by 3 months.
In December 2001 I had an autologous stem cell transplant and again a good response which led me into the plateau stage.
At the beginning of the plateau stage I was on interferon which caused no problems initially but I soon became progressively depressed. Depression is one of the side effects of interferon and for me stopping the interferon eliminated the depression.
In March 2005 I developed another retina vein thrombosis, this time in my left eye which followed the pattern of the previous one, blurred vision which again fortunately cleared by 3 months.
All was fine until September 2006 when I suffered a pathological fracture of the left mid shaft humerus which required surgery, a full length rod and pins (titanium prosthesis) followed by radiation to kill off any MM. My IgG level increased at this stage but reduced after radiation.
It was then decided that I would benefit from maintenance therapy of a low dose of Thalidomide. All was well for eight months when I started to feel the dreaded peripheral neuropathy in my finger tips, the sole of my feet and in the toes. After another four months the neuropathy had increased so the dosage was reduced giving a small reduction in neuropathy. It soon increased again so I stopped the Thalidomide. The neuropathy has since reduced but I can still feel it in the soles and toes.
In November 2007 my IgG levels started rising accompanied by pain in my right humerus, the start of my disease relapse. A lytic lesion was developing in my right humerus, radiation decreased the pain but the IgG levels kept increasing.
A discussion on further treatment came to the conclusion that a second stem cell transplant was the best option. This was scheduled for July 2008 but delayed one month for other urgent cases. By the time I entered The BMTU I was suffering MM pain in the spine, ribs and right humerus. My right arm had to be kept in a sling to prevent a breakage.
Eight weeks after the second transplant I had surgery on my right humerus, a full length rod and pins (titanium prosthesis).
The 100 day post transplant #2 tests have come in successful. Yeeeeehaaaaa!!!!!!!!
Glossary:
BMTU: Bone marrow transplant unit
DVT: Deep vein thrombosis.
IgG: Proteins produced by plasma cells.
MM: Multiple myeloma, a cancer of plasma cells that usually arises in the bone marrow.
Plateau: When myeloma is stable. A period of stability.
Prosthesis: Artificial body part such as a limb.
I was diagnosed with MM stage III IgG kappa in June 2001. At diagnose I had extensive bone involvement including 3 fractured ribs, one collapsed vertebrae and one partially collapsed vertebra. Two weeks after diagnose I developed a DVT in my right calf which soon cleared with the help of warfrin. A DVT is not uncommon for MM patients. Initial treatment was VAD (Vincristine, Adriamycin and Dexamethasone) and the bisphosphonate Aredia and after 4 months I had a good response to both. This was followed by a stem cell collection which gave me enough stem cells for two transplants. In November 2001 I developed a retinal vein thrombosis in my right eye which was MM related. The symptoms were blurred vision which fortunately cleared by 3 months.
In December 2001 I had an autologous stem cell transplant and again a good response which led me into the plateau stage.
At the beginning of the plateau stage I was on interferon which caused no problems initially but I soon became progressively depressed. Depression is one of the side effects of interferon and for me stopping the interferon eliminated the depression.
In March 2005 I developed another retina vein thrombosis, this time in my left eye which followed the pattern of the previous one, blurred vision which again fortunately cleared by 3 months.
All was fine until September 2006 when I suffered a pathological fracture of the left mid shaft humerus which required surgery, a full length rod and pins (titanium prosthesis) followed by radiation to kill off any MM. My IgG level increased at this stage but reduced after radiation.
It was then decided that I would benefit from maintenance therapy of a low dose of Thalidomide. All was well for eight months when I started to feel the dreaded peripheral neuropathy in my finger tips, the sole of my feet and in the toes. After another four months the neuropathy had increased so the dosage was reduced giving a small reduction in neuropathy. It soon increased again so I stopped the Thalidomide. The neuropathy has since reduced but I can still feel it in the soles and toes.
In November 2007 my IgG levels started rising accompanied by pain in my right humerus, the start of my disease relapse. A lytic lesion was developing in my right humerus, radiation decreased the pain but the IgG levels kept increasing.
A discussion on further treatment came to the conclusion that a second stem cell transplant was the best option. This was scheduled for July 2008 but delayed one month for other urgent cases. By the time I entered The BMTU I was suffering MM pain in the spine, ribs and right humerus. My right arm had to be kept in a sling to prevent a breakage.
Eight weeks after the second transplant I had surgery on my right humerus, a full length rod and pins (titanium prosthesis).
The 100 day post transplant #2 tests have come in successful. Yeeeeehaaaaa!!!!!!!!
Glossary:
BMTU: Bone marrow transplant unit
DVT: Deep vein thrombosis.
IgG: Proteins produced by plasma cells.
MM: Multiple myeloma, a cancer of plasma cells that usually arises in the bone marrow.
Plateau: When myeloma is stable. A period of stability.
Prosthesis: Artificial body part such as a limb.
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