Newly diagnosed

Hi Snowgal 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 for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well……. especially as I have had 2 Allo (Donor) Stem Cell Transplants (June 2024 then Oct 2015) and I am 9 years out from my last treatment and doing great.

We do have a dedicated Stem Cell Transplant support group that covers every type of blood cancer.

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.

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 I was diagnosed with myloma in February this year had severe back pain the myloma was at 92% resulting in fractures in.my back I am high risk went onto a trial  got 4 cycles of tablets and chemo then had a stemcell transplant. I am now waiting to go onto another 4 cycle of tablets and chemo .everyone has different treatments but I hope this helps 

Hi  Snowgal       i lived in Bristol for 8 years still love that  city,   sorry the message that brings you here,    i am Kevin AKA  Vespa,   male   mature,     just retired then got diagnosed with MM,    i am now  10 months post SCT  and doing very good ,       i am sure they may  propose  4 cycles of DVTB     which is  injections     and tablets  at home,   and ongoing blood tests,     i was a outpatient,  pretty much 3 times per week     for a  4 month period,    blood tests monday,     injections    tuesday and Friday,   and   tablets at home,  to get me ready for Stem cell harvest and Transplant,       the process for me was good,  in Birmingham,  then back to  Worcester for     recovery,  the Chemo   before transplant    knots your   body for a six to  kill off any cancer cells,   it took me  10 days in  hospital to recover  enough for discharge,    this   part is the tough part,  but  let me say with no hesitation,   IT IS WORTH IT    i am in Remission,   on Maitenance  drugs and    leading a good life,   walking    driving,     cut grass      wash cars   out with my wife,      fatigue   is the part you can not control,   whilst having treatment  and post stem cell,    the best advice i had from this forum was  " rest when your body tells you,    you are tired,    going to bed for  2 hours in the PM  was  normal for me,      Macmillan   resource books   are  great and  of course your    health team,   i  think recently  Southmead   just won an  award for  Haematology care        others   people will i am sure come forward with  support,   you are not alone,       best wishes from us      KEVIN