New here

HI  Larry70  Welcome to the Forum,   some good people on here will respond,   i guess i just happen to be first up this morning !!   i have MM,   2.5 years post Stem Cell transplant  and in Remmison and  feeling good,  not perfect, but better than the alternative,    i have read good things about the RADAR  trials,  and new treatments,       i am sure you are aware what comes next ?  Stem cell harvest and then transplant,    the recovery is a tough one,   just to make you aware,      i had 10 days in  high care   room,  but great  support from Worcester hospital     i hope you get briefed well, and Macmillan are a great source of information and support.      anything  you would like to know please ask,    we are here to  help each other,   Kevin,  AKA  Vespa 

good luck with next stage 

• I was diagnosed with mm feb 2024   I am on radar trial had stem cell transplant July 24 in remission now on lenalidomide also isatuximab once a month and other medication  life is a new normal hope all goes wellnwith treatment .

Thanks all good so far 

So far so good in early stages of treatment tiredness is the only side effect so far

It is fatigue that gets you just rest when you feel tired .

Hi, I was diagnosed Feb 23 and Stem cell transplant September 23.  Been in remission over two and a half years.  Im on Lenolidomide and lots of other medication  but im living my life to the full. Have severe neuropathy in my feet and lower legs but its better than the alternative.   Everyone on here has there  own journey but just reach out to us, we will always reply and listen to your body,fatigue is one thing I think we all get.  I hope your treatment is not too bad for you .  Good luck. 

Hi Larry70. Welcome to the forum.

From your replies, as sounds as though you are not having that many treatment side effects.

As Vespa mentioned, the stem cell transplant and recovering from it can be a bit tough (I didn't have one myself). Not trying to scare you .

All the best. If you have any questions or want advice, there are many of us on this forum who have plenty of experience.

Personally, I was diagnosed in 2022: still in remission. Still working, exercising, going on holidays and generally enjoying life.

Hi Larky70 and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your journey to date.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma.

I was diagnosed way back in 1999 at 43 with a very rare (8 in a million) incurable but treatable type T-Cell Low-Grade Non Hodgkin’s Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare fast growing type of T-Cell High-Grade Non Hodgkin’s Lymphoma was presenting….. so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well…… and when it comes to Stem Cell Transplant more so…. as I have had 2 Allograft (Donor) Stem Cell Transplants (June 2014 then Oct 2015)….. but I am over 10 years out from my last treatment and turned 70 last Nov.

Great to see that the group members are picking up on your post - you are in safe hands with these amazing folk and there is nothing better than connecting with people who have lived experience.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend does have a few folks with Myeloma in it so worth checking.

All the very best.

Hi Larky 70 and welcome to the Forum. 

I was diagnosed with myeloma in October last year and began treatment in January this year.  I am on one of the newer treatments too, Isa-VRD, so my experience will not be the same as yours.  What I can say, is that after 3 x 4-week cycles of treatment it’s working.  My paraproteins have dropped hugely and are now just above normal.  My kappa light chains have dropped from 300 to normal. For me this makes it all worthwhile.  I’ve still a very long way to go, but I just keep reminding myself that it’s worth it. 

Fatigue appears to be common to all of us undergoing treatment and can only add my voice to others in saying rest/sleep when you need to. 

I think it’s also worth my flagging up that stem cell transplant is no longer offered to anyone aged 70+.  This is partly because the newer treatments have shown to be just as effective and also because doctors feel it’s not worth putting older patients through it.  I’m not suggesting that you at 70+ (I’m 75) but thought it worth mentioning. 

I hope your treatment goes well and if you think I can be if any help in the future please let me know. 

With very best wishes

Jo