[Jjolson]

Running out of options

by Jjolson on Tue Jun 04, 2013 11:40 am

Hi.

I have been a regular visitor to this website over the years since my father was diagnosed with multiple myeloma.

It has been a source of valuable information and comfort, even though this is my first post.

I live in Melbourne Australia and my father was first diagnosed in 2006 at age 59.

He has undergone 3 autologous stem cell transplants, and just six months ago had a donor transplant. Initial results of the donor transplant looked promising but his condition has significantly deteriorated and the Myeloma has now shown up in his liver. His light chains have also spiked. The doctors put him back on thalidomide but it hasn't worked. They are now going to try to bring on host v graff disease? to see if his body's own immune system can fight the disease. They are also giving him Revlimid. He has previously been on Revlimid (and thalidomide and Velcade) but became resistant, hence the donor transplant. His head doctor is a very well respected and renown myeloma specialist who has told him that if the Revlimid doesn't work, they don't have any other options. 

I'm not a doctor and I don't profess to know more than a leading world expert on multiple myeloma, but I have seen on this website (and others) mention of treatments that have not been suggested to my father, namely Kyprolis, Pomalyst and Doxil. I have also read about trials for drugs like Zolinza, panibinostat, Alpidin, elotuzumab, Treanda, Marizomib and Ixazomib.

I suspect that these drugs/trials are not available in Australia.

However, does anybody know whether it's possible to get access to them or even whether it's worth trying? Could dad, for example be treated in the US?

I have told dad to talk to his doctors about it, but he seems reluctant to question them and just trusts that if any of the above was relevant to his situation then his doctors would have recommended it. I'm not sure how the system works but if any one has any information or suggestions I would be extremely grateful to hear from you.

Dad has been so strong fighting this thing until now that none of us really thought it would get to this stage. But for the first time I have started to see his spirit wane as he contemplates the apparent helplessness of his situation. The hardest thing is, he still looks healthy and although quite weak and often tired, manages to stay active. 

I don't have any false expectations, just hoping there may still be other options.

[Nancy Shamanna]

Re: Running out of options

by Nancy Shamanna on Tue Jun 04, 2013 11:51 am

Hi Jjolson, Have you tried contacting the Myeloma Foundation oF Australia? They should know what clinical trials or other options may be available to your Dad. Sometimes also, a drug company may be able to provide a drug on compassionate reasons, even if the drug is not yet approved in your country. Your oncologist would probably know how to approach that issue. Good luck on everything!