[Kate]

Re: Chemo only treatment - no stem cell transplant

by Kate on Thu Feb 21, 2013 5:54 pm

Hi Shayt and McLarson,

Thanks for your replies. Your information on your treatment and the resulting Complete Remissions (CR) are of the utmost interest to me in eventually making a decision together with the oncologist. My plan all along was not to have a SCT. Just the few replies with members going the same route are certainly encouraging and, as Ron stated, quite a number of members are going that way.

I'm nosy, Shayt, are the cancer medications also priced super high in Israel, or are they at a good enough price that we should not only export them but also "re-import" them ?

Kate

[Soren DK]

Re: Chemo only treatment - no stem cell transplant

by Soren DK on Fri Feb 22, 2013 4:50 pm

Hi Kate.

I was diagnosed December 2010 with > 80% abnormal plasma cells and Stage 3 IgA lambda multiple myeloma. Being 70 years and on my second cancer, I chose not to have a SCT and started a MPT (melphalan, prednisone, thalidomide) regimen.

After a month, it was changed to Vecade-dex, and May 2011 I was in CR. Maintenance (with Revlimid or other drugs!) is not used generally here (in Scandinavia), but the CR lasted until December 2012 and I am now on a CyBorD regimen (cyclophosphamide, Velcade, dex) -- a little hard for a 73 year old boy, but I hope it works something out.

So: 20 months from CR to relapse.

Soren DK

[Kate]

Re: Chemo only treatment - no stem cell transplant

by Kate on Sat Feb 23, 2013 9:17 pm

Hi Soren Dk,

Thanks for your info on your treatment. I hope you will have another CR if that's possible (which I don't know, as I was just recently diagnosed).

But the way I look at it - considering this disease is not curable - 2 good years are 2 good years; at least that's the way I would look at it.

Kate

[Shayt]

Re: Chemo only treatment - no stem cell transplant

by Shayt on Sun Feb 24, 2013 1:38 pm

Kate wrote: "I'm nosy, Shayt, are the cancer medications also priced super high in Israel, or are they at a good enough price that we should not only export them but also "re-import" them?"

Hi kate,

Unfortunately, I believe that the price of these new drugs are the same world-wide … i.e., VERY VERY expensive anywhere.

The health system in Israel is a bit similar to the new "Obamacare" plan, where everybody is entitled to a basic plan. Each year a public / government committee decides which new drugs will be entered into such "basic plan". Fortunately, Velcade was entered in 2010 and Revlimid in 2011, both only for relapsed patients.

I do have a "Privet" enhanced medical insurance, but so far I was lucky not to activate it. My Velcade and thalidomide was approved by the governmental basic insurance plan.

All the best,
Shayt

[KathyC]

Re: Chemo only treatment - no stem cell transplant

by KathyC on Tue Feb 26, 2013 10:55 am

Hi Kate,

I was diagnosed in 2001 at the age of 39. I am a 12 year multiple myeloma survivor who LIVES with multiple myeloma. I have never had a SCT. After I was diagnosed, I went up to the Mayo Clinic and got on a trial for thalidomide and did dex 4 days on and 4 days off! Back in those days, that is how they did it!

Anyway, after 4 months of that and responding well, I harvested my stem cells. I was to transplant, but I decided I wanted to wait. The SCT is in my back pocket if I ever need it, but for the past 12 years I have been on and off thalidomide / dex (1 day a week vs. the 4&4). This break being the longest, I have been chemo free for 4 years now.

I have no bone issues, but my M spike is 2.7 g/dL and my IgGs 2700. Both high, but livable, as I have no other issues.

I just say get a second opinion on diagnosis and on treatment options that best fit you. I love the Mayo multiple myeloma dept. They also got me on another clinical trial 10 years ago - a dendritic cell vaccine trial against the multiple myeloma. This may be why I have done so well. Find out about clinical trials too. I have a regimen of supplements I take as well.

Good luck in what ever you decide. You are not alone, find a local support group too.
KathyC

[Multibilly]

Re: Chemo only treatment - no stem cell transplant

by Multibilly on Tue Feb 26, 2013 11:28 am

Hi KathyC,

This is an inspiring account. I'd be curious just what supplement regimen you use. I just started a supplement regimen in hopes of keeping my smoldering markers where they are ... or, best case, knocking them down a bit. By the way, I'm not trying to hijack this thread, and hope that Kate doesn't mind me asking this on her thread