Hello Everyone

One month on from finishing my course of chemo i.e. Velcade.

While I feel better within myself, I am still very tired and sleeping much more. Can anyone comment on how long it took to get some strength and energy back.

My appetite is slowly improving but still can only eat a select number of foods. I imagine the key to regaining energy is to have some exercise and build up ones strength, however this is very difficult to do when you are very tired and fatigued. I am also wondering about remission and what type of monitoring takes place during that period

I welcome any comments, regards Mike

Hi Mike,

The fatigue does pass after another month or so but I still have more fatigue that before I was ill. The amyloidosis itself causes fatigue. My energy level is better than when I was on chemotherapy but after my SCT, I don't have the energy that I had a few years ago. My guess is that you will continue to feel better over the following weeks but you may not have the energy that you had before you ever got ill. But, again, it is still better and you will feel better.

Regarding the monitoring, for now, I do monthly blood tests to check my kidney and heart functions and my free lambda light chains, etc. Are they planning a SCT transplant for you?

my case is pretty similar to DBT's except recovery was slower because I was so ill. Took months to slowly get better, sense of taste too. Numbers kept dropping and considered in remission now. Sense of taste, while not great has improved too. Was tested monthly at first. Urine and blood. Now every 3 months. Heart once a year

Thanks for your informatio. I was working on 1percent improvement each day. My local GP (no amyloid experience) thought this ambitious and said half percent each day ie six months. So it does seem I need to adjust my expectations.
It seems more people have SCT in the United States than we do in Australia
Can anyone comment on this. I will ask about this on my next appointment
Now chemo has finished.
Thnks. Mike

The SCT prodecure kept me in remission for over two years. I am now producing amyloid at an accelerated rate, again, so may be returning to chemo in the near future to get it back down. I am having a cardiac MRI as the echo in December seems to show some changes in my heart function that were not good--mild but still not something I want to let continue.

It has been 3-4 years since I was able to stop taking Thalidomide + Decadron, both of which I took for 6 years. The immediate change for me was that I quickly dropped the weight that the use of the corticosteroid had put on me. I don't think I'll ever be perky again because the amyloidosis caused restrictive cardiomyopathy, but at a normal pace and not uphill I can take 2-3 mile walks without stress. I think my appetite is about 3/4 what is was pre-diagnosis, which is actually ok with me. I am now 10 years post diagnosis, and get blood work every 6 months, and EKG and echo yearly. So, I recommend for a start, a mild walking regimen, not pushing yourself. Keep on keepin' on!

I am just about to start chemo ii have amyloid on liver spleen and kidney not looking forward to it but looking forward to winning the fight with it one worry is willi loae my hair? ??? Hope you do well all heres to our future xxlorny

What chemo drug are they going to give to you? I had velcade and dex. and did not lose any hair at all. When I had my SCT, they gave me maximum does of melphalan and that did cause hair loss. I hated the idea of losing my hair but I got used to it once it happened. Losing it was not nearly as bad as the expectation. And, it came back a bit nicer:)

Also had Velcade,dex. etc. Did not lose any hair either. Did not have a SCT but was warned if I did I would likely lose my hair. Different and more aggressive drugs I take it.