Hello

Hi Hells Bells xx 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 very rare, incurable but treatable type of CTCL - NHL Low-grade non-Hodgkin lymphoma ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my blood cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

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. Hells. Bells.       Vespa here.     Are you happy to share your diagnosis with us !?   I have. Multiple myeloma in remission at the moment after treatment.        It’s been tough but one year on I would never have thought I would feel this good again.  The. N. H. S.  Treatment has been first class for me.   

Hi vespa, I am nearly two years in from my diagnosis of multiple myloma, I had stem cell transplant end of June, now I am on lenalidomide maintenance tablets which are 3 weeks on 3 weeks off, seem to be struggling with my right leg (sciatica) this is what I call it, the pain is constant I just keep popping morphine for pain relief, any other suggestions welcome. Thanks

Hi Hells Bells sorry your at this site but welcome hopefully you can talk with others that are going through a similar journey to yourself.

i was diagnosed with multiple myeloma in 2022 I have been in remission for the last best part of a year you can read about my journey clicking on my profile.

i have constant pain in my feet toes up to my knees & hands I do take pain killers twice daily, I walk daily & exercise which does help a lot. (Due to chemo treatment)

I stay very positive & enjoy each day as it comes good or bad. 

I would like to wish you all the best.

Jacquie

Hi   again,  i am up  early  to watch cricket!      my SCT   was  in Feb and i am about to start Lenalidomide on Wednesday  next week,   and  Zapata    for  bone strengthening   as i have  Lesion on my left hip,    consultant visit next week also  after an MRI   scan  to go deeper,     i am sure you have informed your  health team about the  pain in your leg ?   i take Progabin for  neuropathy  pain,   which is not always there,  but can be   distressing at time,     walking  helps me,  crazy as it sounds,  the pain increases when i walk,   then when i  rest it   dissipates       Vespa     AKA   Kevin

forgot to add,  i had two more rounds of DVTB    post SCT    

Morning,

I've already had the Lenalidomide and zapeta and I was great going through that cycle, I've had 2 mri scans but no lesions as yet, yes I take pregablin for my nerves in my leg, I do try and walk everyday. Hope all goes well next Wednesday.

Hells Bells

Hi all,Mal here .

I have just got out of hospital after stem cell transplant.Extermely fatigued and blood tests every 3 days.I am just happy to be home.21 days in hospital!

Regards , Mal

Hi Mal Betterdays good to hear that you are home - 21 days is a good time.

Now it's allowing your all new immune system to grow and with this your physical recovery will also improve.

Hi mal,

I was in your shoes this time last year, it was actually tomorrow when I got home, im actually feeling a lot better, still getting pain in leg. Things will start to improve.