[Judd1Participant]

I have just been diagnosed with Myeloma, I am 40 years old and feel quite isolated. Apart from coming to terms with my new diagnosis, and life changing events including the inability to walk unaided and having to be taken out via a wheelchair, chronic pain, fractures in my spine etc etc.

I am sure there must be other out there feeling the same as me.

I would really like to meet or chat personally with other Myeloma suffers with the possibility of meeting up and even friendship.

I would love to hear from anyone interested or based in London.

[eveParticipant]

Hi Judd
This is just a welcome to the site,I have read your posting and cannot help you much,Its my husband with Myeloma and he had the usual treatment of CTD then Velcade with DC which is part of Myeloma X1 trials.

May I suggest you get in touch with Ellen the nurse and she might be able to put you in touch with someone who goes to the same hospital

At least you are based in the right place for the best treatment,good luck on your journey,I am sure someone will be able to help you on here.

Also I would get in touch with the under 50 on this site,Lots of them with the know how,plus,you can swear and shout I believe,so Tom tells me LOL
good Luck Eve

[Judd1Participant]

Hi Eve,

Thank you for getting back to me. I have posted in the under 50's section too. I hope your husbands treatment goes well.

Best Wishes
Judy

[primroseParticipant]

Hi judd my name is Alison, i am 43 can relate to what you are saying the pain is indescribable. The pain in my back was getting worse and worse was on MST for the pain twice daily and the oramorph i was chucking down my neck was unbelievable yet still sometimes the pain was unbearable. I found out after an examination and scans at the hospital i had tumours in base of my spine and it was crumbling away and eaing the veterbre plus had one in sternum , hip and head. Eventually pain got that bad had to send for paramedics and was taken to hospital with help of morphine and gas and air. Had a spinal fixation op, metal bars are put in place to stabalize the spine I was lucky because if had got any worse would of ended up in wheelchair. After 8 months of radio and CTD i have now had my stem cell transplant 3 weeks ago. The chemo wasn't as bad as i expected and stem cells transplant was easy except for the 14 days of sickness am home now after 20 days. If anything i can help you with just ask.

Good luck

[PerkymiteParticipant]

Hi Primrose, welcome to the site.

Kindest reagrds – vasbyte

David

[jmsmythParticipant]

Hi allison

You also have had a very rough time and hope that things can only get better. Welcome to our "family" (I'm sure you don't want to be here but they are a great bunch of people). If my hubby gets through CDT he will be having SCT.

My very best wishes to you
Jean x

[MariParticipant]

Hi Judd,

I am sorry you find yourself here, but as the others have said a warm welcome to the site. You might going to a Myeloma infoday is be a good way to meet fellow MMers. I have not kept up with things so I am not sure when the next one is in London but I am sure you can find out through Ellen or elsewhere on this site. I dont have MM my husband does, we live in Kent and he is treated between our local hospital and Kings College Hospital in London,

Best wishes Mari x

[BellaRSParticipant]

Hi!

If you email Scotty on s.hawkes@added-value.com she will send you an invite to the under-50s group.

Bella

[PhilKellyParticipant]

or email Phil: phil.kelly2@btinternet.com

[DebsParticipant]

Hi Judd,
I don't live in London, but in High Wycombe and have family and friends in London.
I would definitely recommend the Under 50 that Scotty and Phil run, but I'd stay on here too…they both have lots to offer!
Not everything is inevitable so try to keep positive – though I think that is harder when you are first diagnosed, it becomes easier as time goes on.
Good luck with it all
Debs x

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