Newly diagnosed, and full of questions

Hi  Sat around ( love that!)   i am post Stem cell now,   130 +   days,  and about 1 year ago,  went through the  treatment  called  DVTB,       which you may be on,  its  not all Chemo,     the acronyms is for the drugs administered,  and it may be the same for you,   hopefully the team  gave you some  advice sheets ?     the T  stand for Thalidomide,   tablets taken at home,  this is Chemo,   D  is for Daratumbaba,   an Immunotherapy   drug,  using your  immune system to battle the myeloma  cells,  ( i beleve)    V  is for  Velcade  an injection given  subcataniously      anyway  i had 4 cycles of this  over,  as you say   3 weeks,   then 1 week off,  and  blood tests every week,   and sometimes    2  treatment  visits to Haematology   in one week,    main thing for me was the Neuropathy    increased with some of the drugs,  and more   discomfort than pain,     fatigue   also,  but i learnt   to listen to my body and go to bed for 2-3 hours in the afternoon,    i was diagnosed on my 66th birthday,  and my retirement day!   the consultant   said to me   "  you are  young and fit,  we will tackle this aggressively "  made me laugh,      successful   stem cell harvest in December and SCT  in Feb        good luck on the journey,    you will need the best support from your loved ones,     just one thing to add,  the health care i received  in Worcester hospital  and QE  2  in Birmingham was  nothing short of  incredible !       you are not alone,   others  will respond to you,   best wishes   Kevin,   keep us posted  we can offer help and advice    Kevin   AKA  Vespa  

Hi and welcome to this group.

The '3 week on, 1 week off' cycle is normal, as is the plan to have a stem cell transplant after around 4 months.

How people respond in terms of side effects varies considerably, so no one can definitively tell you how it will effect you physically.

However, my experience has been this. I was fit and active on diagnosis, but in my 50s, so my experience may indicate how things could go.

I used to cycle, lift weights and walk long distances, together with some running. The chemo made much of that impossible after a few weeks (but see spoiler below). I maintained the walking as best I could, but my heart rate went much higher than before. I stopped going to the gym but kept my membership as it was my aspiration to go back ASAP.

The biggest side effect that I had was fatigue. I started to need sleep during the day. That was made worse by dexamethazone, a steroid which often causes sleeplessness at night.

I had episodes of constipation, nausea and loss of appetite too.

I can't comment from experience on a transplant as I have not had one.

Anyway, I went into remission and started going to the gym again. It was a long, hard slog to regain my fitness but I am pretty much there.

Hi, I was diagnosed with Myeloma March last year.  Roughly had the same chemo as you, I had a stem cell transplant last September which was pretty rough going but week after week I felt stronger and stronger.  There are still a lot of things I can't do because I have back pain and neuropathy in my feet but to be honest I have never felt better. I am in remission  and am on a maintenance drug.  Everyone is different  but I'm sure you will be ok.  Stay strong and positive  and we are always here to listen and give advice.  Take care.

Thank you I appreciate the reply and it’s great to hear your in remission  I’ll will be soon, appreciate the honest reply around the stem cell as have no idea what it will be like  

Hi, yes the SCT itself is just administered thru a drop, painless but you have a massive dose of chemo thru a drip the day before and it's that which makes you ill.  I had mouth ulcers, vomiting,  drrhea,  fatigue.  I didn't eat or drink for 11 days. Had to have saline drops etc. I never felt so poorly  but on the 12 day I turned a corner and just went from strength to strength.   My stem cellurse did prepare me tho, she was brilliant.   The harvesting of the stem cells is painless too. Its amazing how they do it. All done thru cannulas in your arms, takes about 4 to 5 hours.  I'm sure yvwill be fine and I hope this has helped. Your doctors etc will help you thru every step.  Take care and stay strong. 

Thank you

I did a regime of 4 monthly cycles then had sct transplant about 3 weeks ago it was not easy but should be worth it at the end of it all it is the fatigue I  find the hardest but wish you good luck with the treatment 

Sorry about  all the praying hands, don't know what happened there!!!!

Thank you for the reply, can I ask would you have been able to work during chemo?? Even if it was from home, as and when suited your needs?? 

Lol