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.
Showing posts with label Velcade. Show all posts
Showing posts with label Velcade. Show all posts
Tuesday, October 20, 2009
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.
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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