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Waldenstroms? Anyone heard of it or know anything about it?

13 replies

lisalisa · 20/09/2004 15:04

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susanmt · 20/09/2004 16:47

lisalisa, I dont know if my dh will know anything about this but I'll ask him. It would probably help him to know what your Dad's other health problems are.

Poor you and your Dad and your family. Sending you some big (hugs). I have no idea what this is like but hope things work out well for you all.

lisalisa · 21/09/2004 10:56

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lailag · 21/09/2004 11:30

in a rush but try this (although usa not very applicable to uk)

www.iwmf.com/
www.icomm.ca/geneinfo/waldenst.html

lisalisa · 21/09/2004 13:48

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susanmt · 21/09/2004 14:14

lisalisa - yep my dh is a GP, so he's not a specialist in this but he would know where to look and about the risks etc. Unfortunately I didn't get a chance last night as he was on call and out twice, but I'll ask when he gets in tonight.

lisalisa · 21/09/2004 15:17

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lailag · 21/09/2004 17:47

Think this will be difficult to comment on in a general way, as there are so many different types of chemo (with different aims).
BTW Why did he have a heart attach when he was only 30??I mean, are there any (familial???) risk factors? Seems a bit more worrying than the Waldenstrom bit but then no expert. Sorry, DH is also a GP but doubt he would able to tell any more.

lisalisa · 22/09/2004 10:44

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lailag · 22/09/2004 13:31

Don't quote me on this but I think some oral chemo drugs (used for blood disorders) dont't have that many side effects. Howver, because it is such a specialised problem I would only listen to a "properly specialised" person/doctor.

006 · 22/09/2004 13:37

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lisalisa · 22/09/2004 14:39

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susanmt · 22/09/2004 16:47

lisalisa, I spoke to my dh and he basically said (1) he knows nothing about Waldenstroms, only the name of it as it is pretty rare and (2) he thought that if they were suggesting chemo then the docs who are treating him would have more idea and wouldn't be offering it if he couldn't take it. Breathig diffuculites and a pacemaker shouldn't contraindicate chemo, but he will have to take it VERY easy.

But he didn't want to commit himself to saying what the effects could be, not knowing your dad and not being able to see his medical notes and examine him.

I know this sounds like a copout but he really didn't want to give you false information. Both of us wish you all all the best and I'll be checking back to find out how he does. Love, Susan xxx

lisalisa · 23/09/2004 17:16

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