[Amelie]

2nd sct - perspectives

by Amelie on Sat Mar 03, 2012 5:31 pm

John (my good friend aged 61) is due to his 2nd sct this summer in July.

I can't describe how disappointed I am. He got the first sct in August 2010 and it was extremely successful in terms of life quality. He has been doing very well and managed to get back to work full time. His pp went down to 1.3, but then last spring it started rising again and now it is over 21 He didn't get any maintenance treatment because his doctor is against that and it isn't common here (we are en Denmark).
I expected much longer remission since his life quality was so good.

Before the sct he is going to be treated with thalidomide, and he expects to be able to work while on thalidomide. How realistic is that? What are your experiences with thalidomide?

I would also be most grateful to hear about your experiences with a 2nd sct. Was it easier or worse than first time? And how was the result compared to first time?

Thanks in advance.
Amelie

[meeshymeesh]

Re: 2nd sct - perspectives

by meeshymeesh on Sat Mar 10, 2012 5:47 pm

Hi Amalie
First of all as you probably know treatments, side effects and remission times vary considerably but here is my brief story.
Started Revlimid, Velcade, Dex in Feb 2011 (pp was 2.9)
It stopped working after 4 rounds. (pp 1.7)
Then started Velcade, Cytoxin,Dex - no improvement
Then tried Thalomid. I noticed my neuropathy became a little worse, made my very sleepy and change my taste buds and unfortunately for me did not help my pp go down.
I had my 1st stem cell transplant in Dec 2011 and I am now in hospital having my 2nd to try and achieve CR.
After my 1st SCT my pp went from 1.7 to 0.4. A good decrease but still only a VGPR very good partial response.
Some people may have just had the one but as my myeloma seemed quite resistant my Dr recommended having the tandem as I am only 43 years old.

So in answer to your questions your friend has done really well so far so working may not be a problem.
I will keep you posted on how the 2 transplant goes.
Good wishes to you and your good friend, John.

[Amelie]

Re: 2nd sct - perspectives

by Amelie on Tue Mar 13, 2012 8:28 pm

Hi meeshymeesh,

Thanks a lot for your reply!
I have to keep telling myself how individual is this disease but it is so hard to have no slightest idea what to expect.

Please keep us posted how your 2nd sct is going.
All the best wishes to you!
Amelie