[ianv5Participant]

Hi

My name is Ian and I have recently had the sad news that my Father (Jim) has been diagnosed with quite advanced Myeloma (his doctor reckons it might have started 10 yrs ago!)

The sad irony though is that I donated Stem Cells last year to a patient requiring a bone marrow transplant.

The goodnews though was it was succesful!

http://www.anthonynolan.org/news/2013/07/03/kettering-resident-donates-bone-marrow-stranger

From my understanding and talking with my Dad a stem cell transplant is not an option at his age, to top it off he also has Prostate Cancer!

We are being positive though and my Dad has just started on a course of treatment where he has to take numerous pills on a daily basis.

I am just glad to see that there is a forum dedicated to Myeloma where hopefuly I can cleen more info and progress on a journey not on my own.

Thanks

Ian

[mhnevillParticipant]

Hi Ian

Sorry your a Dad has been diagnosed with Myeloma. I was diagnosed in 2010 and chose not to have a Stem Cell Transfusion. I took a Course of chemotherapy CDT two years ago and am currently in complete remission. Although the MM did considerable bone damage, I have a four weekly Zometa infusion and this seems to have kept things stable.

There is plenty of hope, even for those not able to have SCT. The drugs can have side effects, watch out for shingles, but it is all very manageable.

Best wishes to your Dad.

Mavis

[VickiParticipant]

Hello Ian

Jay to give your dad some encouragement……a colleague of mine has prostate cancer and he has been told it’s very treatable and taking medication of a regular basis can control it. I realise it’s a real blow to have that and myeloma! I so hope that you get some luck and that your dad makes some progress to remission

Best wishes

Vicki and colin

[dxsParticipant]

Hello Ian

Sorry about your Dad, perhaps he’s around the same age as me (71)? If his treatment includes Thalidomide, tell your Dad to report any numbness, tingling or shaking in his fingers or toes ASAP. Thalidomide is notorious for that side effect – properly known as peripheral neuropathy. Also tell him to report any soreness in his muscles (particularly legs) ASAP. That could be a sign of a blood clot, which Thalidomide is also known for. Unfortunately I’ve had both.

Lenalidomide (Revlimid) is a much newer substitute for Thalidomide with reduced peripheral neuropathy but still will blood clot risks. Bortezomid (Velcade) still has the peripheral neuropathy risk but apparently with much reduced blood clot risks. You pays your money……… I’m glad that Mavis had a successful CDT treatment (which is what I started on) but it is – from what I read – a little out of date. The villain in the piece is NICE and the treatment recommendations it makes. Ian – please suggest to your Dad to have his haematologist fully explain the options available.

Best of luck. David

[PerkymiteParticipant]

Like your Dad I have Myeloma and Prostate Cancer. I am on third line Myeloma treatment, I was diagnosed with Myeloma 2009, and with advanced prostate cancer 2011. I am in complete remission with the Myeloma on Revlimid. something I have never achieved in 5 years of SCT and Velcade. My prostate is an agressive one and I am being treated with HTT and I see the consultant, 6 monthly appointment, in July. It has been giving me a lot of problems but I am hoping that we can ease those at the July appointment.

Any questions please feel free to ask.

Kindest regards – vasbyte

David.

[Author]

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