Molecular profiling

Thanks Andy. It really helps knowing I’m not the only one. I really appreciate your help.

My pleasure. Any time. It feels incredibly lonely at times with this disease.

You’re right about that. I’m finding it incredibly hard not knowing where it’s likely to spread to next.

Hope became my best friend, and probably still is.

Absolutely, never give up hope! Find something positive in every day. Check out Chris Woolams, Health watch, I also follow Bethany Webb, stage 4 cancer survivor . 

Hi Andy,

Hope you’re doing well? I wondered if you could share the name of the trial you were on? My husbands consultant is also Prof Bridgwater and after being on an FGFR inhibitor trial for over a year which he did really well on (tumours shrank by 35%) it has unfortunately stopped working and it is beginning to grow again. He’s having another test to check for further mutations which we are still waiting on but has been put on Chemo (FOLFOX) in the meantime.

Hi Jules,

Sorry it’s abit late but figured you may still want some info. Have you had molecular profiling done in the end?

My husband had it done and found he had an FGRF mutation which made him eligible for a clinical trial. I think this picture on the AMMF instagram shows all the possible mutations you could have. Once your oncologist knows then they can check for clinical trials you may be eligible for. The one my husband was on completely turned him around, he was really unwell before starting the trial and immediately started feeling better after two days of taking the tablets.

I’ve just seen your post about the list of mutations. I spoke with Professor Bridgewater recently. I don’t have the IDH1, or FGFR2 mutations, but he’s going to test me for the others. I was shocked to hear that not all oncologists test for the “top two” as a matter of course! It shouldn’t be up to us to find this out and push for testing. It’s hard enough when you get diagnosed with an uncommon type of cancer. Wishing you all well.

Hi Zoe,

It was M7824. Sadly I was the only one out of 100 patients that had a lasting response so the trial was abandoned after 2 years. 
The AMMF charity will have their annual conference in May (8-10) which you may attend in person or virtually. Many of the top consultants will be there and speaking including Prof B. There is a Q&A after each session. Well worth attending, if you are able. 
Wishing all the best for you and your husband.

Hi Jools,

I’m sorry that you didn’t have either of those mutations and hope you have one of the others listed. Is he checking for the others with a liquid biopsy? 

I was surprised to see that you hadn’t heard about molecular profiling in the first instance after being diagnosed and had to find out all this information yourself. Prof Bridgewater is one of the best though so you are in good hands now