False starts:
After 2 false starts I am now on the Rev-lite clinical trial for relapsed myeloma.
False start #1 was a lytic lesion suddenly detected in my right femur requiring hospitalisation for intramedullary reconstruction nailing.
False start #2. 14 days after discharge I could not put any weight on my right leg and it was very painful. An x-ray showed there was now a fracture in the lesion, in hospital for 8 more days.
Clinical trial summary:
My Rev-Lite trial commenced on Wednesday 28th April 2010.
Study title: Phase II trial of low dose Lenalidomide and dexamethasone in relapsed or refractory multiple myeloma (Rev-Lite) in patients at high risk for myelosuppression.
The purpose of the study is to see whether a lower dose of Lenalidomide in combination with dexamethasone is effective in treating multiple myeloma which has not responded or relapsed to prior treatment, while producing fewer side effects in comparison to the higher dose used in previous trials.
Brand name = Revlimid. Generic name =Lenalidomide.
Treatment for first 4 cycles of 28 days is:
Lenalidomide 15mg dose on days 1 to 21, then 7 days free.
Dexamethasone 20mg dose on days 1-4, 9-12, 17-20, and then 8 days free.
Aspirin daily.
After 4 cycles the status of my disease will be reassessed. If my disease has shown improvement or remains stable I will continue on the study. If my disease has become worse my participation in the study will stop.
There are the normal warnings of many side effects.
Funding:
In New Zealand we have a public health service. Unfortunately the funding agency Pharmac does not fund Valcade or Revlimid. They are approved for use in NZ and applications for public funding are in the system. We have to compete for the Pharmac dollar along with all the other cancers and illnesses. If we want it we have to fund it ourselves. Currently 6 months of Revlimid costs about NZ$50,000. The Rev-lite trial is at no cost to me.
Private health insurance for cancers is a recent development in NZ that is gaining popularity though the cost is alarming. Previously we had believed that the health service would be the provider. I did not qualify for the Valcade trial but do for the Rev-lite trial.
My myeloma journey continues.
Showing posts with label Revlimide. Show all posts
Showing posts with label Revlimide. Show all posts
Monday, May 10, 2010
Monday, April 26, 2010
Why did this happen to me?
I was due to start my rescheduled myeloma Revlite clinical trial on 15th April 2010. Unfortunately the evening before the trial I developed huge pain in my right femur the one that had been rodded and pinned 2 weeks prior. I could not apply any weight to my right leg. Next morning I could not get out of bed so phoned the hospital who cancelled my trial and ordered an ambulance to take me to hospital.
X-rays were taken that showed I had a small fracture at the lytic lesion.
The next 8 days were spent in hospital. Orthopaedics confirmed that the rod and pins were all in place with no problems there.
My pain killers were increased and physiotherapy commenced with leg exercises in bed. The rod and pins in my left humerus were giving me pain limiting the use of crutches. It was decided I needed a walker designed to take pressure off my arms. It has 2 handles for my hands like a triathletes handle bar and a flat padded base that I can lean on.
After 8 days I was released home in a wheel chair along with my walker.
Next haematologist appointment is Tuesday 27th April where we discuss what happens next.
This has been a huge disappointment to me with 2 attempts at the clinical trial being postponed at the last minute.
After reading of side effects of Lenalidomid and dexamethasone that others have experienced I wonder if it is worth having chemotherapy until the leg fracture is healed and I am mobile again. The side effect of cramp on a fractured leg worries me.
X-rays were taken that showed I had a small fracture at the lytic lesion.
The next 8 days were spent in hospital. Orthopaedics confirmed that the rod and pins were all in place with no problems there.
My pain killers were increased and physiotherapy commenced with leg exercises in bed. The rod and pins in my left humerus were giving me pain limiting the use of crutches. It was decided I needed a walker designed to take pressure off my arms. It has 2 handles for my hands like a triathletes handle bar and a flat padded base that I can lean on.
After 8 days I was released home in a wheel chair along with my walker.
Next haematologist appointment is Tuesday 27th April where we discuss what happens next.
This has been a huge disappointment to me with 2 attempts at the clinical trial being postponed at the last minute.
After reading of side effects of Lenalidomid and dexamethasone that others have experienced I wonder if it is worth having chemotherapy until the leg fracture is healed and I am mobile again. The side effect of cramp on a fractured leg worries me.
Thursday, July 9, 2009
Health update July 2009
A Sid update 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 09 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.
I took an emotional hit. Based on the previous transplant I was expecting 3 years of clean health. Perhaps my expectations were too high, after all it is myeloma.
So I had to deal with my anger, my emotions, my disappointment, my shattered dreams, pick myself up off the floor, bring it to a conclusion and move on. Now it's sleeves rolled up ready for the next stage, more treatment.
After discussing the options with my haematologist it was decided to have chemotherapy, cyclophosphamide and dexamethasone. That started on Tuesday 1st July 09 and will run for a 28 day cycle when we view the results and reassess where we go from there.
I did not want Thalidomide treatment because of the peripheral neuropathy it caused me at a low 50mg dose over 15 moths previously. Some of that PN is still in my feet. The other options Velcade and Revlimide have Pharmac and funding issues in NZ. I really do want to use those treatments even if it is a trial or if I can get them on compassionate grounds. An explanation of that is at the bottom of this posting. That will be on the table for discussion at next appointment.
Some times I wish I lived in USA to get access to all the new treatments and trials that are available there.
In recent weeks I have suffered from an inflamed sternum up at the top of my chest. It is very painful to cough, feels like a knife in my chest. There has been x-rays which radiology said showed nothing and I am on a pain killer Paradex. If there is no change or if it does not improve I will insist on a scan.
Bortezomib (Velcade) and Lenalidomide (Revlimide) status in New Zealand.
Source http://www.lifebloodlive.org.nz/section/ask-the-experts
Q: Velcade is only available in NZ within clinical trials of relapsed myeloma as a second or third line treatment. What steps are being taken for the use of Velcade in NZ to be upgraded?
A: Bortezomib ("Velcade") is registered and available for patients as second line therapy in New Zealand but it is not funded by the health system. This means that a patient would have to pay for the Velcade personally or through the private health care system. It is not a cheap drug. There are also trials available where the drug is supplied free but not all patients can enroll in these trials.
Pharmac are currently considering reimbursement of Velcade in the first relapse setting and we may hear about this in the near future. There is also currently an application with MEDSAFE to have bortezomib registered for first line use in myeloma and we should also hear about that in the near future.
Q: Revlimid, a thalidomide derivative, is not available in NZ. What steps are being taken to have Revlimid available for use in NZ as treatment for myeloma?
A: Lenalidomide ("Revlimid") is registered and available in New Zealand to be used in relapsed myeloma. However it is not funded through the public health system and so a patient would have to pay for the drug personally or through private health care. A submission to Pharmac to consider public funding for this drug will be put forward in June to be considered in August.
Glossary:
PHARMAC The Pharmaceutical Management Agency of New Zealand, PHARMAC, manages a list of subsidised pharmaceuticals, the Pharmaceutical Schedule, on behalf of the Crown. Pharmaceutical suppliers may apply to PHARMAC to have a medicine listed on the Pharmaceutical Schedule for subsidy.
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 09 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.
I took an emotional hit. Based on the previous transplant I was expecting 3 years of clean health. Perhaps my expectations were too high, after all it is myeloma.
So I had to deal with my anger, my emotions, my disappointment, my shattered dreams, pick myself up off the floor, bring it to a conclusion and move on. Now it's sleeves rolled up ready for the next stage, more treatment.
After discussing the options with my haematologist it was decided to have chemotherapy, cyclophosphamide and dexamethasone. That started on Tuesday 1st July 09 and will run for a 28 day cycle when we view the results and reassess where we go from there.
I did not want Thalidomide treatment because of the peripheral neuropathy it caused me at a low 50mg dose over 15 moths previously. Some of that PN is still in my feet. The other options Velcade and Revlimide have Pharmac and funding issues in NZ. I really do want to use those treatments even if it is a trial or if I can get them on compassionate grounds. An explanation of that is at the bottom of this posting. That will be on the table for discussion at next appointment.
Some times I wish I lived in USA to get access to all the new treatments and trials that are available there.
In recent weeks I have suffered from an inflamed sternum up at the top of my chest. It is very painful to cough, feels like a knife in my chest. There has been x-rays which radiology said showed nothing and I am on a pain killer Paradex. If there is no change or if it does not improve I will insist on a scan.
Bortezomib (Velcade) and Lenalidomide (Revlimide) status in New Zealand.
Source http://www.lifebloodlive.org.nz/section/ask-the-experts
Q: Velcade is only available in NZ within clinical trials of relapsed myeloma as a second or third line treatment. What steps are being taken for the use of Velcade in NZ to be upgraded?
A: Bortezomib ("Velcade") is registered and available for patients as second line therapy in New Zealand but it is not funded by the health system. This means that a patient would have to pay for the Velcade personally or through the private health care system. It is not a cheap drug. There are also trials available where the drug is supplied free but not all patients can enroll in these trials.
Pharmac are currently considering reimbursement of Velcade in the first relapse setting and we may hear about this in the near future. There is also currently an application with MEDSAFE to have bortezomib registered for first line use in myeloma and we should also hear about that in the near future.
Q: Revlimid, a thalidomide derivative, is not available in NZ. What steps are being taken to have Revlimid available for use in NZ as treatment for myeloma?
A: Lenalidomide ("Revlimid") is registered and available in New Zealand to be used in relapsed myeloma. However it is not funded through the public health system and so a patient would have to pay for the drug personally or through private health care. A submission to Pharmac to consider public funding for this drug will be put forward in June to be considered in August.
Glossary:
PHARMAC The Pharmaceutical Management Agency of New Zealand, PHARMAC, manages a list of subsidised pharmaceuticals, the Pharmaceutical Schedule, on behalf of the Crown. Pharmaceutical suppliers may apply to PHARMAC to have a medicine listed on the Pharmaceutical Schedule for subsidy.
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