Multiple myeloma relapse

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Hi all,not posted for quite a while. 

I was told in early September that my myeloma as relapsed and I would have to start treatment again,so after some discussion with my consultant we decided on D.V.D Treatment was the best way forward for me.I have now started treatment, side effects are tolerable at moment except for tingling hands which I have been told you can get gloves for but the only ones I could find online were more for arthritis and carple tunnel,I have ordered some of them to see if they help"if anyone could advise on this matter I would appreciate it. 

I'm a bit concerned what the future holds regarding this treatment because it seems more intense than my previous treatment which was V.T.D treatment followed by stemcell transplant which I feel have left me with a few other health issues so not as fit as first time round "if anyone could advise on there experience would be great,I know we are all individual and can react differently towards treatment and meds.

Many thanks in advance little G

  • Hi.  Kevin here. AKA Vespa.     I am 9 months post stem cell and in Remission  and on Lenolidamidee maintenance drug        The tingling sounds like peripheral neuropathy like pins and needles?      I take Pregaling  for this   It helps    Mine gets worse in the afternoon        And my feet     Some of the meds side effects make it worse.       If you had a stem cell harvest they may have collected enough for a second one ?   I found the DVTB.  treatment also ok    And is slowly reduced the MM   And I am sure the same will happen for you      I hope they can get you back on track    I follow what is approved by NICE for 2 nd line of treatment and it is worth the effort       Best wishes.  Kevin 

  • Cheers for your reply and info,already spoken to the consultant who did sct he said he wouldn't recommend it in my case.I started taking Lenolidamidee but turns out I'm allergic to it so had to stop, I was just short of 2 yrs  post stc before I relapsed. Hoping you have a better outcome 

    Many thanks, best wishes Gary

    Hi all just joined ,just starting my second week of treatment so still not sure what to fully expect from meds. Time will tell.

  • I started on DVD plus lenalidomide.

    I had tingling and cramp in my hands when I started treatment. I didn't buy anything special: just tried wearing a light pair of gloves, and that was enough.

    I also bought - and this was a spur of the moment purchase - a pack of 6 table tennis balls from Sports Direct. I didn't take the balls out of the packet, but used the packet to rub against the back of my hands to ease the cramp. It sounds strange, it was strange, but it worked until the side effects went away. Still in remission.

    As you say, experiences vary, but this has been mine.

  • Hi Little G,

    So sorry to hear that you have to have more chemo.

    I suffer from Peripheral neuropathy,  nerve damage to feet and hands, it includes tingling, feeling cold etc.

    I bought some elasticated, fingerless gloves which help a lot. They keep my hands warm and seem to help generally.

    They are readily available,  I think I got mine from Amazon .

    I can't comment on stemcell treatment as I haven't been through it, but I will be going back on chemo soon.

    I wake every morning and thsnk the big fellow for another day, I also look in a mirror, think of my family and tell myself " I am blessed "

    Lots of love and best wishes

    Mike

  • Hi. I’m on first line treatment of DRd. I’m responding well. My light chains have gone from 600+ to 6.3 in just 2 cycles. Side effects are upper arm pain and a bit of tingling in my hands. Got to be careful of infections too but it seems my body took a dive at the beginning but is now tolerating the drugs better and my wbc and neutrophils are stabilizing. It’s working well for me so hope it does for you too. Good luck 

  • thats  good to read,  i am not sure what DRd  is,  but i will Mr Google in a minute  Slight smile       are you on  second line treatment after  relapse?   did you have SCT ?     we hope all keeps going well for you as we navigate the  tough journey,       i also Feel blessed  with the life i am leading  !!      Kevin

  • Daratumumab, lenalidomide, dexamethasone (DRd)

    a  combo       Dexa   always made me feel good  in the   treatment  leading up to the SCT    i had DVTD   4 Cycles,  then SCT  then 2 more cycles,   now on Lenolidamide   maintenance   which seems to be the " go to drug for  maintenance of MM        Credit to Macmillan for the information above      Kevin

  • DRd is 

    daratumumab, lenalidomide, and dexamethasone

    its first line treatment for me as they didn’t want to do sct as I have atrial fibrillation. As I say it’s working well for me I’m on my 2nd treatment in cycle 3. 

  • me again,  i  just read that DRd  is for patients  considered not suitable for  SCT     apologie  for me    jumping in with not researching,         hope the   meds get you a good life,      thanks for posting    Kevin