Stage IV colon cancer with BRAF mutation

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taniadobbs
Posts: 3
Joined: Thu Dec 10, 2020 12:30 am

Stage IV colon cancer with BRAF mutation

Postby taniadobbs » Thu Dec 10, 2020 12:58 am

Hi there,

My husband is 42 years old and was diagnosed with colon cancer stage IV. He had surgery in October and his cancer spread to liver and stomach line. He had an obstruction and was hospitalized for 20 days he lost 30 pounds. It was an emergency surgery at Northwell Health. After discharged from hospital he got sick again and admitted at MSK in NYC. He started chemo treatment and hoping to get a scan after this fourth round. The did a genetic test and found out he has BRAF mutation. MSK doctor thinks we should continue with standard chemo treatment Because he has been responding well and only use special drug for BRAF if he has to. We had a second opinion and doctor says that BRAF is very aggressive and we need to start with a special drug for it right away. What should we do?

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Stage IV colon cancer with BRAF mutation

Postby Lee » Thu Dec 10, 2020 6:41 pm

Hi and welcome, sorry for the reason you are here.

MSK is probably the #1 hospital in the USA, if not the world. I would tend to listen to them, BUTT where did you get your 2nd opinion (what hospital?) & what "special drug" are they talking about?

What chemo treatment is he currently on? Does MSK have a long term plan?

Sorry, lots of questions without answers to your question. Butt need a bit more info.

You will find a lot of support & information here,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

taniadobbs
Posts: 3
Joined: Thu Dec 10, 2020 12:30 am

Re: Stage IV colon cancer with BRAF mutation

Postby taniadobbs » Fri Dec 11, 2020 12:51 am

We had a second opinion with Dr. Wasif Saif (he is the Chief director of Northwell Heath Cancer Institute on Long Island). He seems very concerned about the BRAF and thinks that it should be treated right away. I was also reading and they say BRAF is very hard to treat and some doctors talk about a Triple Therapy (BINIMETINIB+ENCORAFENIB+CETUXIMAB). Doctor Andrea Cercek from MSK in NYC is aware of those drugs but wants to stay with the standard chemo for now (FOL FOX = Fluorouracil and Oxaliplatin. My husband just had the fourth chemo treatment now we need to have a scan and see if it is working. Dr. Cerkek thinks that because my husband is responding well to this chemo that we should wait for the more aggressive one and only use if we need it later. We need a third doctor opinion I guess to decide what to do. What are your thoughts? Have you heard about BRAF mutation?

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Stage IV colon cancer with BRAF mutation

Postby Lee » Fri Dec 11, 2020 6:37 pm

I will be honest, I am not up on BRAF mutation. It was not something they tested for when I was going through treatment. Hopefully someone here who has that mutation can can give you a better answer.

This is not medical advice as I am not an MD, butt I would stick with MSK. At least wait until after the up coming scan. Maybe than decide. I know that sometimes Onc will save the big guns (chemo) for when things get bad. My Onc gave me that talk. And she did her residence at MSK.

Hopefully someone else will jump in who understands the BRAF mutation better than I.

Good luck, feel free to ask any & all questions. Feel free to vent any time, we get it here. Due to the holidays, members do not check in as much.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Stage IV colon cancer with BRAF mutation

Postby CRguy » Fri Dec 11, 2020 10:19 pm

taniadobbs wrote:Dr. Cerkek thinks that because my husband is responding well to this chemo that we should wait for the more aggressive one and only use if we need it later. We need a third doctor opinion I guess to decide what to do.
What are your thoughts?

Since you asked, my JMO would be go with MSK and save the aggressive chemo if needed, for later
Have you heard about BRAF mutation?

A search for BRAF here will pull up 81 pages of results, so Yes ... we have heard of BRAF

Always good to get more eyes on a situation, BUTT ...
sometimes you need to resonate with ONE plan and go for it
change courses if needed ... BUTT ... it seems hubby is responding well to the current plan
again ... JMO and not specific medical advice.

Best wishes on the Journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Stage IV colon cancer with BRAF-V600E mutation

Postby Green Tea » Sat Dec 12, 2020 2:30 pm

taniadobbs wrote:... My husband is 42 years old and was diagnosed with colon cancer stage IV. He had surgery in October and his cancer spread to liver and stomach line....

It seems to me that you will need to have a third opinion before making the decision between continuing with FOLFOX and switching to the Triple Therapy cocktail (BINIMETINIB+ENCORAFENIB+CETUXIMAB). The issue, in my opinion, has to do with the state of your husband's stomach and whether or not he will be able to properly digest and metabolize the two drugs BINIMETINIB and ENCORAFENIB, given the state of his stomach lining. These two drugs come only in pill form, so they have to be swallowed and digested properly.

You can see why this might be a problem by looking at the list of patient exclusions for the clinical trial NCT02928224 that led to the approval of the Triple Therapy. In that clinical trial, they excluded all patients that might have problems digesting and absorbing these two drugs. Here is the text of the exclusion:

    EXCLUSION #8:
    Impaired GI function or disease that may significantly alter the absorption of encorafenib or binimetinib (e.g., ulcerative diseases, uncontrolled vomiting, malabsorption syndrome, small bowel resection with decreased intestinal absorption)

So I think you need to have a qualified doctor look into this situation to see if there might be any forseen problems with your husband starting this kind of therapy. This might also include the need to examine any additional symptom-relief meds that your husband might be required to take to deal with his stomach issue and whether any such drugs would interact adversely with Binimetinib or Encorafenib.


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