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SalShep

Genomic Profiling

Hi all,

Hubby had a call from his oncologist yesterday evening to arrange a meeting on Tuesday to do the bloods and consent form for the genomic profiling with Roche.

Has anyone had this done?

Are there questions we should be asking?

This what he's having done

www.roche.com/...mprehensive-genomic-profiling.htm

Thanks

MysticLooRoll

Hi @SalShep - I took part in a genetic research trial with my hospital but don’t think it’s Roche based. The research study I took part in basically wants to map the genetic material, see if there’s links to other folk and basically use the information to work on new medications that could help with BC.

My team asked consent to take samples of some bloods, my tumour and any other tissue they could get when they did my operation. I gave the blood samples just before my op, the rest happened during the surgery. I figured why not? If I can help one other person get better meds or help even cure something, then it’s worth it. I have been told I won’t be contacted again by the team unless or until they need something else from me (I gave consent for them to do that) or they discover anything unusual they need to discuss.

Hope that helps.

SalShep
Quote from @MysticLooRoll:
Hi @SalShep - I took part in a genetic research trial with my hospital but don’t think it’s Roche based. The research study I took part in basically wants to map the genetic material, see if there’s links to other folk and basically use the information to work on new medications that could help with BC.

My team asked consent to take samples of some bloods, my tumour and any other tissue they could get when they did my operation. I gave the blood samples just before my op, the rest happened during the surgery. I figured why not? If I can help one other person get better meds or help even cure something, then it’s worth it. I have been told I won’t be contacted again by the team unless or until they need something else from me (I gave consent for them to do that) or they discover anything unusual they need to discuss.

Hope that helps.

I think that might be a little different to what Mark's having done. His it to look for possible clinical trials to put him on :x:

Wegwe

I’m not sure if I remember correctly, but I think @Frances Styles ’ husband had a similar test done recently. Perhaps she has more information for you.

Frances Styles

Thanks for the tag @Wegwe, yes Dave's done the genomic testing just waiting for the results could be any day now. @SalShep we used foundation science at Roche, very slick process. Oncologist signed the consent then we contacted Roche, luckily the chemo unit agreed to draw the bloods prior to chemo cycle even though its a private arrangement, courier arrived at chemo unit, collected bloods within the hour and they were then shipped to Germany that evening , takes 2-3 weeks for results which go back to Oncologist. We paid Roche directly. Who knows it could throw up something exciting for kras or it's foundation knowledge for trials, all in all we thought win win :x::x::x:

SalShep

That sound's nice and straightforward @Frances Styles thank you. I will be thinking of you and keeping everything crossed that Dave's test comes back with something good. Our oncologist is very plain speaking which is great but on the downside he tells you very little and Mark often doesn't want to know. We don't actually know whether Mark has kras, braf etc mutations for example 😏 :x::x:

Frances Styles
Quote from @SalShep:
That sound's nice and straightforward @Frances Styles thank you. I will be thinking of you and keeping everything crossed that Dave's test comes back with something good. Our oncologist is very plain speaking which is great but on the downside he tells you very little and Mark often doesn't want to know. We don't actually know whether Mark has kras, braf etc mutations for example 😏

I know what you mean, oncologist tells you very little. Dave is the same doesn't ask much, but he's OK with me asking, which is how we got to this testing. I take a list of questions, in a book, and the man of Little words (oncologist) actually jokes now about me having my little book of questions. At first I felt awkward, now I'm not bothered, if you don't ask you don't get is my thought. If Mark's OK with you asking, join the club take a notebook of questions. Regarding braf , kras etc, that's one for your list :x::x:

pstack

@Frances Styles I am also looking at doing the Foundation One profiling, Oncologist also mentioned Oncologica and Oncmine (in Ireland). The main thing I want to learn is if I have G12C, d , etc. This seems to the profile where new treatments might be coming. Did you get this level of detail or anything else that makes the profiling worthwhile? Thank you in advance. Patricia

Frances Styles

@pstack Hi Patricia, we did Foundation Medicine, Roche in Ireland. It does tell you the Kras detail, as you say lots of trials coming up. It also lists any other mutations and highlights trials available, a lot are in America, it's a sizeable document. Our oncologist had to order it, we paid and then Oncologist received the results, which he discussed with us. As well as giving us loads of detail, it threw up a couple of mutations and possible newer drugs that might be available, again they may not be drugs available in Ireland, but a lot were. We went through it with our Oncologist, there was only 1 mutation that had a possible different treatment, but our oncologist was not convinced, and our second opinion in the UK, shrugged it off, so we were of a mind it hadn't been that valuable, but did give us lots of information which you need searching for trials. However we contacted a trial which we hoped to get on, but it had closed, the Professor running it discussed a new trial, which we've done pre tests on, but he also mentioned the Foundation Medicine findings and feels the one mutation had good possibilities of a different treatment, so he's keeping that as a second option. I would recommend it as it's provided us with lots of info. Are you in Ireland, if you are and have a medical card, it reduces the cost right down? Love Frances :x::x::x:

pstack

Thank you Frances. Yes I'm in Ireland. I don't have a medical card but will check with my insurance. Some insurers cover it. I'll DM to chat further. Patricia

Cruella

I think this is what The Christie is doing for my loved one at the moment as they officially have a cancer of unknown origin and they hope to find out more about the cancer to find effective treatment or trials

Liz Blakelands

@Cruella Some of new science around cancer is at such a detailed level, it is quite incredible. I really hope it proves helpful for your loved one :x::x: