BRAF mutation. Is anyone dealing with this? No Cituximab.

Hi ,

This was the link I meant to give you . 

http://fightcolorectalcancer.org/fight...i-and-MSS/ 

It would let you see if there are Immuotherapy options further down the road . 

A lot of people still have success with mainline chemos . My own mum has never used any additional targeted agents despite a spread . 

Take care,

Court 

Thank you Court, very much appreciated

The one positive thing about colon cancer is there are lots of combinations of the mainline chemos and a good oncologist can work with that but remember to ask for other specialists to be involved  too . 

It is tough for sure and very overwhelming but once you know the next treatment plan things will open up a bit for you both . 

Take care ,

Court 

Hi, just an update. 

My wife had her scan. The results are not favourable. The FOLFOXIRI has contained the nodules, but not the lungs. The chemo is not working. 

We are now trying to get onto a trial at the Royal Marsden hospital. If she doesn’t fit the criteria, the only other option is “Lonsurf”. But our consultant does not seem too confident. But, as he said, chemo acts so differently to different people. I just don’t know where else to go if she can’t get on the trial. What makes it all the more difficult is the fact it’s a ”Braf” Gene. 

Hi ,

I am so sorry to hear about your wife’s scan . The lung aspect is very disappointing. I can’t remember if your wife is MSS or MSI . There is five clinical trials currently in the UK for patients with MSS and Immuotherapy. It’s had some good results in America with patient with a high tumour mutation burden . Which has allowed trials for patients with MSS not just MSI . 

I have a friend who has had an amazing response to Immuotherapy with lung cancer and she is only on her fourth cycle.

I can understand the reluctance with longsurf although the few patients it does work for seem to have a good response but there has been a lot of reports about it being rough . 

I hope you hear some good news about the clinical trial soon to give you both a boost .

take care ,

Court 

Hi Court, 

Thank you for your reply. 

What do you mean by MSS or MSI? 

Hi ,

Very roughly Bowel cancer patients are split into two groups . Microsatellite Stable (MSS) . Or Microsatellite Insatiably MSI . If you are MSI which is a smaller group of patients Immuotherapy treatments like Keytrunda is a possibility and getting very good results . The number of mutations in your cancer is referred to as Tumour Mutation Burden TMB . They are now investigating if patients who have lots of mutations but MSS may also benefit from Immuotherapy . Other cancer groups like Melanoma and stage 4 lung cancer are using this form of treatment . 

In America some patients use a combination of chemo and Immuotherapy as required. We don’t have the same access to treatment but your wife’s oncologist would need to do some tumour testing to see if it would apply to her . There is one clinical trial available for MSS patients . I only mention it as I understand the reluctance with Lonsurf and it may provide another treatment approach . If you have a look at the clinical trials section in Cancer Research UK it will list the criteria’s for entry .

Hope you have some success with the trials ,

Court 

Hi ,

Our Helpline 0808 808 0000 might also be able to offer other options . You might also like to consider a second option . They can be very helpful in getting another’s clinical eye and see what options they might come up with .

Court 

Hi Court, 

just an update. Wife has now been accepted onto a trial at the Royal Marsden hospital. Hopefully starting next week. We will find out more next Tuesday. My wife was so excited she’d forgotten to ask what  the trial was called   but we know it involves tablets 2x a week and 2 visits to Sutton

Brilliant news . That’s great that she meets the criteria . What a relief for her although you made me laugh at her forgetting to ask . I totally understand . You just hear the good news and everything else becomes irrelevant. 

Hope it goes well . Send her our love and let us know how she gets on .

take special care,

Court