[GayeParticipant]

Dear Friends – I am in awe of some of your stories and of the lot that life has thrown at us. You are all great. I wish you good results. I had my RT simulation today and it seems that the T6 has collapsed completely so it would gain nothing by a balloon kyphoplasty. So next Thursday they are treating some of the thoracic vertebrae and lumber region by RT. Hooray! Good news on the out of stock Pomalidomide drugs on Monday. They got swung into action and a courier from Barts delivered it at 9pm yesterday evening. That's what I call thinking about the patient. Cycle 2 started today.

Love to you all. Gaye xx

[SharonGParticipant]

Hi All
Gaye I am glad they have sorted out a plan for your radiotherapy, it seems to have taken them a long time though. Glad you got your 2nd course of Pomalidomide delivered!
Jo this was the patient guide to spinal cord compression that I looked up on the NICE guidelines but you can just search the guidelines yourself if you want, http://www.nice.org.uk/nicemedia/live/12085/42587/42587.pdf
Hope it helps!
Sue will speak to you soon as I am now back home!
Love to all and thank you all so much for your support
Sharon x

[AndySParticipant]

Hi Sharon,
I'm new to this forum but just under a month ago I went to a hospital appointment with back pain and in the course of four hours had been diagnosed with myeloma, given dex, sampled for bone & bone marrow, MRI'd and admitted on bed rest, next day the radiotherapy began. It all came as something of a shock. They kept me in for three days and I had the last three R/Ts as an outpatient. The pain subsided over a week or so and the numbness in my legs seems to have not got any worse. Just the chemo to get my head round now. Hope you get home soon and it stops hurting. My Oramorph has mostly been in the fridge for the last couple of weeks. Hope its the same for you.
Andy

[SharonGParticipant]

Hi Andy
What a shock for you! At least they took the right course of action and I'm glad you are back home like me! My oramorph hasn't been used for a week again, so I think the radiotherapy is doing its trick, I hope your radiotherapy helps the numbness in your legs, it can take a few weeks to fully have effect though. Wishing you all the best Andy

Sharon x

[BADGERParticipant]

Hello Andy

welcome to the site it must have come as a big shock to you to be diagnosed with MM as it was with most of us I have never heard of it before you will find all the help and encouragement you need hear, and do look for a support group in your area they are a great help also

Kind regards Jo x 😎

[AndySParticipant]

Hello all
Thank for your kind welcome. Even as a beginner this forum makes it clear how much we all share similar experiences as we confront myeloma as well as the illness itself and the related issues of side-effects and "bits dropping off" as a consequence of it. I am sure that I will be able to learn from the experience of others and I hope, make some small contribution myself.
Best wishes to all,
Andy

[Author]

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