Multiple myeloma

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

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 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of living with an incurable blood cancer......especially as I have had 2 Allo (donour) Stem Cell Transplants (SCT).

So sorry to hear about pain you are experiencing....... I reflect back to late 2013 when I was also experiencing significant pain (upper body/neck) during the treatments that were being used to get me into the position for going onto SCT..... I does pass but these words are not much help for you at this point in time.

Let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not 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.

We do have a dedicated Stem cell transplant support group where you can connect with others who have navigated the SCT process. Why not join the group and introduce yourself as there are  few folks with MM in the group.

Always around to help more or just to chat.

Thanks Mike for your reply.   Hope your journey continues to be a positive one. I will definitely look at the links and groups you suggest.   Hopefully I will  climb out of this dark hole with help from others.  Thank you

You will see from my story I am coming up to 8 years out from my second SCT, I am turning 68 in Nov and doing great.

Brilliant!,  I'm 68 too and only just starting my journey so will take positivity from you!

Do join the Stem cell transplant support group and gave a look round all the posts.

Hi Bunky, sorry to hear you have the dreaded MM. I have MM, no stem cell harvest, but completed my chemotherapy two years ago,  had the same issues with feet and hands,  it is called Peripheral neuropathy and is a bitch.

I spoke to me GP who prescribed  GABAPENTIN,  it really helps me with the neuropathy,  doesn't get rid of it, but makes it bearable.  I take Codeine for the pain.

People who haven't experienced the problems don't understand , I do.

I have been told I am in remission from the MM,  but the issues caused by the chemo keep on going.

I am 72, male and with the help of the medication am living a reasonably good life.

Look at yourself in the mirror, think of your family and friends , think of the love and support they give you and say out loud    " I am blessed"    it really helps.

Good luck, God bless.

Hi, thank you  for your reply.  I will ask my doctor if maybe I could try gabapentin as I'm.on 600mg of pregablin daily and they don't seem to do anything.  I've not been offered codeine either.  Maybe I should try those as it is getting me down now.  Thank you for your help and your very kind words, they really touched me and it helps to know others are going thru the same as me.  Take care  stay strong and be blessed.