[JacquieParticipant]

HI everyone my name is Jacquie my partner Geoff was diagnosed with Multiple Myeloma IgA on 16 July 2012 at the age of 54. He chose to go on the Myeloma XI tial and is on the Revlimid. He is still in shock from the diagnosis and I wondered if there are any fellow patients in the Gloucester area he could talk to?

First round of treatment did not go too well ending in a few days in the hospital with an allergic reation to the allopurinol. He has just started the next course. He seems to suffer with tingling in the hands, feet and face? is this normal? Also is awake every few hours in the night and hardly ever gets a good nights sleep.

[BADGERParticipant]

hello Jacquie

S0 Sorry you have had to join this forum the diagnosis must have been such a shock for you which I dont think anyone truly gets over
the tingling in his hands can happen to a lot of people when having the chemo is he on Dex if so that is what cause the sleeplessness its a very common side effect if it gets too bad he must tell his consultant they may need to check the dose it may need adjusting
Good LUCK
LOVE jO

[JacquieParticipant]

Thank you Jo he is on Dex

[VickiParticipant]

Hi jacqui,

We live in the forest of Dean. My partner colin was diagnosed age 55. We go to GRH for appointments. Colin is on myeloma 11 trial. He had 7 cycles of cyclophosphamide, dexamethasone and revlimid. The dex made him feel emotial, a bit moody and he had real problems sleeping. He did not mention tingling or anything, he did feel very very tired. He is currently off treatment with a stem cell transplant planned for 24th September, 2012 (he was diagnosed in oct 2011. A complete shock, sometimes we/I can't believe it now.

Please ask away as if we can help we will. With regard to poor sleep Colin used to get up for a bit, read, have cereals and then come back to bed, sleeping reasonably well.

Good luck 🙂

Vicki and Colin x

[JacquieParticipant]

Thank you for your reply hope everything goes well with Colin's SCT. Will keep in touch (if you dont mind as its nce to know someone local going through the same). Geoff attends the EJU as well and is only just started his second cycle. I still cannot believe all this it turns your life around.

[MicheleParticipant]

Hello Jacquie

All of us MM'ers fully understand Geoff's (and your) shock. It's as if an express train has mowed you down isn't it?
All I can say is, once you've unscrambled all those illogical, confused thoughts and have come to terms with what MM is and the incredible amount of treatment that's available for it, you'll be much calmer and will be able to think sensibly again.

Yes, your lives will be different now. Initially there will be lots of hospital visits and drugs, but once Geoff's MM has been dealt its first big blow and he's in remission like me, you'll be amazed how "normal" things will be again.

I had an allergic reaction to allopurinol too. I had a red itchy rash, but as my kidneys hadn't been damaged at all I was taken off of them after 1 cycle.

Talk to us whenever you want to. Any question no matter how trivial can no doubt be answered by the various lovely folk on this site.

Take Care
Michele x

PS I'm in Dorset but know the Gloucester area very well. My husband's ancestors lived in and around Elmore.

[JacquieParticipant]

Hi Michelle

Thanks for your response, Geoff had the rash from head to toe! it was so horrible, I am glad it will get easier I think once Geoff accepts the diagnosis it will get easier still.

I also know Dorset a lovely part of the country have an Aunty in Swanage.

Hope all is well with you x

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