[noelParticipant]

Hi Ann,

I completely agree with you on there not being an option when dealing with high risk myeloma if an allo graft is recommended. The problem for us is that there seems to be different trains of thought amongst consultants on whether an allo graft is a beneficial form of treatment when compared to new targeted treatments; so if the experts can’t agree then how can we make an informed decision? For me, risks aside, an allo graft was a more pro active approach in dealing with my form of myeloma as opposed to the reactive one of waiting for things to happen.

It must have been very disappointing to find your auto graft had not given you a good remission but try to remain positive as you move forward; VTD worked very well for me and got me ready for my auto graft in four cycles and there are many more combinations available if needed. Hopefully before you know it you’ll be getting the news that you have a matched donor and moving ahead towards your transplant.

Hi Linda,

Yes, initially I did not like the sound of an allo graft transplant but the more I learned about it and the reasons why I was being recommended for it, the more it made sense. Stem cells from a donor are there for a different reason than when you receive your own stem cell back after high dose chemo. Your own stem cells are used to recover your bone marrow whilst a donors stem cells are introduced in order to introduce the donors immune system which will fight the cancer cells. So definitely ask lots of questions, you will need to understand the role of graft versus host disease for instance and you should discuss in detail the risks and benefits of the treatment. Hopefully having a greater understanding will make the decision to go ahead less daunting.

So I’m back in London tomorrow for my third infusion, all is going well so far. Pity I can’t say the same about the trains though…

[noelParticipant]

Hi Nicola, sorry for late reply, I haven’t been on here much since xmas. It seems the way we both presented our myeloma is very similar and yet the treatment leading up to SCT was different; apart from the Dex – everyone seems to get Dex.  You may be still in hospital as I write this so I hope it has all gone well for you. Just remember that recovery is very slow so be patient with it. It took me a good six to seven months before I was anywhere near back to normal. Try to remain positive, use all the support you can get and you’ll be feeling better before you know it!

[noelParticipant]

Hi Cygnet,

My bone pain did eventually become persistent but it took it about seven months to get to that point. In the beginning the pain would last a few days, then it was weeks and it would be quite severe. My bone pain was mainly in the sternum and the ribs and before treatment started I was also beginning to feel back pain. I worked in a factory so I was unable to work at this time. Treatment never stopped me driving but the bone pain almost did; remember though that everyone’s condition is different as well as their reaction to treatment so it’s difficult to say one way or the other how it will affect you.

With regards to your hospital all I can say is listen carefully to what they say regarding diagnosis and treatments. If it is Myeloma then you need to see a myeloma specialist which may mean you being referred to another hospital and you should ask about taking part in clinical trials as this will give you access to new drugs or new combinations of drugs. I live in Luton and the Haematologist here immediately referred me to a specialist in London and all my treatment so far has been carried out there.

I hope all goes well for you, try to stay positive,

Noel

[noelParticipant]

Hi, I was diagnosed about 18 months ago and so have been where you are now also. A marrow biopsy will happen pretty quick; I had my first one done within a week of my first haematologist appointment. I’ve now had five biopsy’s and have had local every time.

Once the procedure starts it only takes about five minutes and in my experience the pain was minimal; a little stinging when the local goes in and a little pain for a few seconds when taking the marrow blood sample. You may have some pain for a few days afterwards but it’s manageable with paracetamol.

Try to be positive, you’re in good hands,

Noel.

[noelParticipant]

Thanks everyone,

Being and remaining positive is very important to your well being. I am feeling so much better now than I did when I was first diagnosed and it’s all about keeping it that way. There are exciting new drugs on the way and survival times are improving all the time. Lots to look forward to.

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