Newly diagnosed with MM

Hi Sheldan71 and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your diagnosis.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-Grade NHL then in late 2013 a more aggressive type of NHL came along with me now reaching Stage 4a so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well…….. especially as I have had 2 Allo (donor) Stem Cell Transplants (SCT)  (June 2024 then Oct 2915) and remain in remission 8.5 years on…… we do have a dedicated Stem Cell Transplant support group where folks from all blood cancers support each other in the Magical, Mystery Tour that is SCT.

There are a few active members at the moment so let’s look for them to pick up on your post. Do click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

We also have our Ask an Expert section but do allow a few working days for a reply.

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.

Always around to help more or just to chat.

HI  Sheldon71   i am   Vespa,  AKA  Kevin,  also with MM   diagnosed in June  23,   now  10 weeks post SCT  and  after  4 cycles of the treatment  DVTB   into remission,  the process of the Harvest  whilst painless was boring so  take books     i pads etc,   and you can not go to the Loo,  so  hold it in!     the conditioning Chemo before SCT  infusion also  easy,  and the SCT  transplant it self    totally  painless,   the PICC   line whilst  daunting for me   also turned out to be    seamless and    very professional    with the two  Health  care   professionals so reassuring       i am now  on the last  2 cycles  of DVTB  minus some Velcade and Thalidomide,  as  my   Nueropothy  is  painful for me,  but on painkillers,   no  sugar coating the   10 days in hospital  were  not  pleasant as your body    needs support with IV   antibiotics,      plasma   transfusions,  and some days  were  very difficult,    help from  wife was  brilliant with change of clothes food and drink support,  i had no  appetite,  but now life is   getting better,  and it  will for your,  reach out to the SCT   support group    and look for  financial support from the Government  Care allowance if you qualify,         Best wishes to you,   the path to recovery   as started and it is worth the effort believe me!!    Kevin

Vespa said:

HI  Sheldon71   i am   Vespa,  AKA  Kevin,  also with MM   diagnosed in June  23,   now  10 weeks post SCT  and  after  4 cycles of the treatment  DVTB   into remission,  the process of the Harvest  whilst painless was boring so  take books     i pads etc,   and you can not go to the Loo,  so  hold it in!     the conditioning Chemo before SCT  infusion also  easy,  and the SCT  transplant it self    totally  painless,   the PICC   line whilst  daunting for me   also turned out to be    seamless and    very professional    with the two  Health  care   professionals so reassuring       i am now  on the last  2 cycles  of DVTB  minus some Velcade and Thalidomide,  as  my   Nueropothy  is  painful for me,  but on painkillers,   no  sugar coating the   10 days in hospital  were  not  pleasant as your body    needs support with IV   antibiotics,      plasma   transfusions,  and some days  were  very difficult,    help from  wife was  brilliant with change of clothes food and drink support,  i had no  appetite,  but now life is   getting better,  and it  will for your,  reach out to the SCT   support group    and look for  financial support from the Government  Care allowance if you qualify,         Best wishes to you,   the path to recovery   as started and it is worth the effort believe me!!    Kevin

Thank you for your response. Hearing how well things are going for you is so appreciative. I wish you well and hope your remission is a long one. 
I will get there I’m sure

best wishes