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.