[JaperKHParticipant]

Hi Angela,

I'm grateful for your taking the time to write.

I'm sorry to hear Graham suffered through bad pain for almost five months, but very pleased to know that, since then, all seems to have gone as well as well as can be expected. My mum has now had a couple more tests and the positive news is that her bones and kidneys are currently in good condition.

Thanks for the advice about Manchester. We are trying to explore all our options and so its nice to know there is yet another recommended place. Also, I will do as you suggest and try and find only the good information on the web, rather than the outdated stuff.

I wish you luck with the transplant.

Best, J.

[JaperKHParticipant]

Hi Mavis,

Thanks for the warm welcome.

You're right, I should have at least mentioned my mum's age. She's just turned 55 and was diagnosed through routine blood tests, which I think were part of one of her usual checkups. My mum's suffered from pyoderma gangrenosum for much of her life and so blood tests are nothing out of the ordinary.

Thanks also for your opinion on the difficult question of whether to opt for a transplant. We had a consultation with the haematologist last night that I found a bit unnerving, mainly because he told mum that an allogeneic transplant could be classed as curative (which, based on the research I've seen, is not correct) but also because he failed to make clear to her just how risky that procedure can be. Essentially, he thinks mum should have induction threapy (VCD) followed by high-dose therapy ending with an ASCT. And I don't think there's anything in principle wrong with him proposing that line of treatment. But for him to not fully explain the implications of that choice, nor outline alternative options, does strike me as some kind of failing.

That said, he did, to his credit, refer us to a Myoloma specialist, and in other respects he was incredibly helpful.

Very stressful times!

[JaperKHParticipant]

Hi Vicki and Colin,

Just to say that I'm very grateful for your words, and that I wish you continued success in the future.

Best,

J.

[JaperKHParticipant]

Hi Tim,

Thanks for taking the time to reply.

Sadly, we've now learnt that mum does indeed have Myeloma. A number of people have told us now that the Marsden and UCH both offer great treatment. So thanks for further confirming that fact. Your opinion is really appreciated in this stressful time.

Best,

J.

[JaperKHParticipant]

Hi Eve,

Many thanks for taking the time to reply in such detail. Your message contained some very helpful information for which I'm really grateful.

I will certainly ring the helpline at some point very soon. I will also do as you suggest and learn as much as I can about the disease. I suspect this will be my main way of coming to terms with it, as well as gaining some sense of control. Hopefully it will also enable me to help mum.

It's encouraging to hear that London is a good place to seek treatment.

Best, J.

[JaperKHParticipant]

Hi Carol,

Thanks for taking the time to reply in detail – it's really appreciated. I'm sorry to hear about your diagnosis, but glad to hear that you've had an excellent response to the therapy. By the sound of things London is generally a good place to be treated, which is reassuring to hear.

I wish you luck with your transplant.

Best.

[Author]

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