New here. Wild Type gist

Hi Balmy

Sorry there were no takers for this, an issue of course with sarcoma is that it is quite rare to start with and then when we look at sub-types it can be a challenge to find anyone who is a match. In my case it is my wife with Leiomyosarcoma - always interesting when she sees a locum GP and watching them look it up on wikipedia.

By replying I will push your message to the top of the stack so fingers crossed that it might find you a connection; you might also like to try the sarcoma.uk site as that also might give another possible link.

<<hugs>>

Steve

Hi I have wild type gist sarcoma, I have had part of my bowel removed but I have now been told it has spread to my abdomen, I’m 10 months in and still don’t know that much about this cancer, I know I can’t have chemo or radiation as it doesn’t work on this cancer, I’m so worried about it 

Hi Calwoth 

There is some information from the sarcoma uk site here that I see notes the use of Oral anticancer targeted drugs - not traditional chemotherapy but rather more advanced. It also talks about after treatment and also living with cancer - this is certainly our state but it took quite a bit of help for us to realise that is something we could do.

<<hugs>>

Steve

Hi Steve thanks for ur response, I can’t get the tablets either, Cambridge don’t even have a trial I can have, so only option for me is going to be removal.

Hi Calwoth 

I would normally expect someone with sarcoma to be under the care of a sarcoma specilist centre, we are quite lucky in that we live close to Oxford. If your case is not already under one of these it might help to ask for a referral.

<<hugs>>

Steve

I’m from Scotland, but I’m attending the Beatson in Glasgow at the moment, I was told the last visit that it that rare it a wild type gist sarcoma and there is less than a handful of people in the uk have this type 

Hi

Yes, all sarcomas count as rare and that can have issues knowing if anything may or may not work. Cancer research UK have some more specific advice on rare cancers here.It does not of course diminish the impact of more common cancers but does mean very often we are closer to being an experiment.

My wife's oncologist felt that it was worth trying some chemotherapy for my wife although he was not exactly over promising on a positive outcome and actually it worked much better than he had hoped - caused some other issues that needed to be patched up - but the doctors could do that. The second line chemo they tried put Janice's cancer to sleep - not a cure but she says "It is not bothering me and I am not bothering it". 

I have heard some very good reports about the Beatson so that is one positive.

<<hugs>>

Steve 

Thanks Steve I’ll have a look at the above link to cancer research, that sounds good for ur wife, it’s just the whole mental side for me at the moment as I’m like ur wife it’s not bothering me at the moment as I’ve had it removed so I’m just going about my life trying to be normal and working it’s good for the mind ️

Calworth these guys will be worth contacting. https://www.gistcancer.org.uk

They offer to try and put you in touch with others with similar diagnosis.

I got told today i have  GIST but still waiting on genetic analysis to see what type...