[tmcParticipant]

Hi Andy
Sorry to hear the sct isn't an option at this time and your siblings weren't the right match, but they can surely take your stem cells when that time comes.
Glad to hear you are off to see a national expert on MM and hope that he can improve on the stable condition you are now in, which is ok but can be better. Maybe the dex rev and added cyclo will kick things into action for you.
If you meet up with Helen have a coffee for me I would like to meet up with you two in the coffee shop and pretend all is normal
Back pain is so terrible I reallly do sympathize with you and would like to know what Vikki managed to get for Colin to help his back pain?
Love Teresa.

[ElizellenParticipant]

Hi Andy!

Well, as the others have said, at least you have had some questions answered and it looks as if you are now under the care of one of the head honchos in the MM world, which must be an improvement.

Love
Eliz
XX
X

[VickiParticipant]

Hi theresa

Colin had terrible back pain but ironically not at the point where he had the vertebrae fracture. This was love down at the bottom left of his back. Before diagnosis for mm Colin has always had back problems and had surgery about 10 or so years ago. So the pain relief was more about the lower back and we were told that the MRI was not affecting that point.

With regard to the medication there was a lot of trial and error but they settled on zomorph (100mg) 2 a day, pregabalin 25mg x2 day. Paracetamol 8 a day and oramorph when required. After all that seemed to work!

Vicki x

[andygParticipant]

Hi All.
Thanks for all your messages of support and encouragement. After a weekend of contemplation I am now back to my "normal" ? self 😉 I must admit I was a bit down with the outcome of Fridays meeting but I have moved on from there and now know a bit more of the battle ahead. I'm going to maintain a positive attitude because I think we all agree that helps. I'm looking forward to seeing Prof. Jackson and hearing his input.
Today I saw a consultant radiologist and I will be receiving some radiotherapy on my lower back – sacrum – next week hopefully. Which is quick work since my consultant only put the request through Friday afternoon!
Thanks once again friends for your support – it really does help.

Bring it on!
Andy

[MinParticipant]

Hi Andy, Proff Jackson is a really nice approachable down to earth man. Tell them at the desk that you are on his list. Or one of t hem may pick up your notes.
There are a few blue badge bays near to the entrance, and you will be on the ground floor that you enter by. At the rear of the hospital. Follow signs for the Bobby Robson unit from main road entrance.

[tmcParticipant]

Hi Andy
so glad to hear you are having radiation so soon. It really helped Peter with his rib pain. They gave several low doses to one area and a large dose to a rather bad area. The low doses allows them to revisit the site again.
So I really hope this helps with your pain and staying on the table while the radiation is aimed at you doesn't prove too painful
Love Teresa.

[tmcParticipant]

Hi Vikki
Thank you soo much for the info. The doc came by today and has started Peter on a permenant pain drip with breakthrough pain pump every 15 mins. So we are hopig this helps. So glad Colin has his pain under control and hopefully it doesn't effect his daily ife too much
Love Teresa

[andygParticipant]

Hi Min.
Thanks for the info. I have met Prof Jackson before at a support group meeting and as you say he was very approachable and easy to talk too.
Hi Teresa.
Just posted to you under carers 😉 This will be my second dose of radiotherapy and it's not at the same site. Though it is close to it. I was just thinking about how my back will cope with lying still whilst I get zapped – I think I'll take some pain killers before I go. It seemed to do the trick when I went for my MRI.
What a lovely thought you had about meeting up around a coffee table and pretending everything was normal. Talking about the weather, plants in the garden, your son in laws latest brew, Helen's trip to New Zealand it would be great to leave MM behind for awhile and have a good laugh.

Love Andy xx
Oh and yes I'm on dex and not too sleepy yet 😉

[tmcParticipant]

Hi Andy
I think i may have missed somethign.Are you having radiation becuse you are cracking? Or is the pain from a tumour or nerves or what? Sorry if you have already explained this else where.
Well it's Tuesday was it today you went to see the Prof in his clinis?
Love Teresa.
I will pop over to carers and see whay you have to say.

[andygParticipant]

Hi Teresa.
I'm having radiotherapy on my lower spine because there is an active area there that could be causing some back pain. So they want to zap it 😉
I've not got my appointment to see the Prof. yet though it seems his myeloma clinic is on a Tuesday as I've been told by people in the know. Hopefully I'll get an appointment through the post soon.

Love Andy xx

[tmcParticipant]

Hi Andy
Do let us know when you have your appointment mailed to you so that we can think about you. I hope it isn't a midnight appointment and you can tolerate the lying still for so long.
I hope the radiation helps and is there talk of surgey yet? or radiation will cure it?
Love Teresa

[Author]

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