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Hi again Jinxy28 and well done navigating across to this corner of the community. Sorry to hear about your sister MM diagnosis but great that you are looking to try and help her as best as you can.

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.

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.

Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00 where you will find one of team there to help you out. 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 this out for her.

Always around to help more or just to chat.

Hi jinxy28.    Kevin here.   Also newly diagnosed with MM.  June this year.  66 th birthday.    Retirement day.     What a phone call that was from doctors for a referral!     Well I am now on cycle two of the treatment plan.   Here in Worcestershire.   NHS.  Fantastic!!        It was hard to share with close family. 2 live in Australia.    Right now. Your sister needs both. Moral and physical support.    I am still mobile.    But with limps.  Back and lg lesions.   No a lot of pain to be honest.      I visit hospital. 3 x per week. Monday always blood tests.  Then treatment. Tuesday and Friday.   All now with subcansieious injections.     Steroids and other drugs administered at home.  Get a diary for her.        Macmillan have been wonderful. I. Ordered a lot of the books.  Gave a donation as they are free but of course it’s a charity.    Mike and others have guided me to the correct form and. Advice.      You are not alone.       Please feel free to ask any question.    Some others will also respond.       Are you going to be her caregiver ?      Kevin 

Vespa, Thank you for your reply, I’m sorry to hear of your diagnosis and I’m so glad to hear that you are receiving treatment.   My sister and the family are still trying to process. It’s been very emotional. She had originally been diagnosed with osteoporosis in Feb after suffering two non trauma related fractures in L5 and L4 vertebrae…. But then she was sent for a bone marrow biopsy. She developed an infection which hospitalised her and that’s when further investigation revealed lesions in her back and one on her right femur. We live in Northern Ireland and our lack of government is impacting the nhs here. Her oncologist is fighting her corner to get her treatment started asap but a group of consultants are implying her condition is not serious enough yet to proceed with treatment, which we find totally unacceptable! …. I guess it’s still early days but surely prompt action is essential! .. I am still at work but her husband will be her caregiver, I recently changed my contract to part time so I will be available as much as I can… thank you … I will post more news as we receive it ..  take care x

Hi everyone, just a catch up. I was diagnosed with multiple myeloma in March, I had all my treatment, stem cell harvest and 2 weeks ago had my transplant. In those weeks I hit rock bottom,  never felt so ill, D and V, didn't eat or drink for 11 days, and one day I woke up and had turned the corner.  It was like a miracle!  I started to feel great. I'm going home today hopefully   after 20 days but just want to say, hang in there guys, accept all the help you can get. My family and friends have been amazing as has the brilliant Royal Hallamshire hospital in Sheffield.  Sending special prayers to you all. Regards

Hi.   Thanks for this.  I am not sure what. D. and V. Mean?     But hooray for goo home.             That was a fast.  Process from March to. SCT. In September.        Take care. Kevin 

Hi Bunky good to hear your update. Your post SCT story is rather normal.

I think we tend to forget that when we get our or donors stem cells put in we start a regeneration/birth process that a newborn baby takes years to complete but in SCT the improvements can happen very quickly…… you have still a ways to go but you are off the starting blocks.

Sorry, it was diarrhea and vomiting, .  Regards

Hi I too have multiple myeloma.  Diagnosed 2 and a half years ago. It was early stages. I had 4 months of chemo with Thalidomide and steroids then 4 months of remission.  I then had 12 months of chemo with steroids and Revlimid.  Worked wonders. I ve been in remission for over a year with no bone marrow transplant  and plenty of prayer. You ve got this. You and your sister xx

Hi.  Did you also have SCT.  ?  

Hi no I chose not to.  I trusted God instead x