The Colon Club

Thank you for this link I will be reading it tonight. Husband had 6 FOLFOX. Last night we found out he is now stage 4. It didn’t work. All it did was make him sick. He now his lymph nodes in mediastinu, abdominal, numerous nodules all over and the lungs are now in question. I was on the phone today with Cancer Centers if America to get a consult and genomic testing to see what will work because this is moving at an alarming rate. I have hope though that they can find drugs that will help. They think outside the box there. I wasn’t really shocked but was shocked at the amount of disease that grew while on FOLFOX and after surgery no less. This is a monster but we are not giving up!

NHMike you are right. It is V600e variant. God it’s pretty sick when you are getting to the point that your reading pathology reports and understanding a lot of it!

I'm sorry that you're going through this. It's what we all worry about happening during treatment. Your husband's case is the first time I've heard about someone with BRAF on this board and the other board that I'm on and that's why I think that Genomic Tumor Testing should be done on all patients when there's a tumor biopsy available as it may change treatment plans and urgency.

Regarding CTCA - I would pick a top cancer center hospital over a for-profit for a second opinion, particularly when my life is at stake. And that's what I did by getting second opinions at Dana Farber and Brigham and Womens. The recommendation to get second opinions at top hospitals is a common one on this board.

Top cancer hospitals:

MD Anderson - Houston
Memorial Sloan Kettering - NYC
Mayo Clinic - Rochester, MN
Dana Farber Cancer Institute/Brigham and Womens - Boston, MA
University of Washington Medical Center - Seattle
John Hopkins - Baltimore, MD
Cleveland Clinic - Cleveland, OH
Penn Presbyterian - Philadelphia, PA
Moffitt Cancer Center - Tampa, FL
UCSF Medical Center - San Francisco, CA
Stanford Hospital - Stanford, CA
Mass General Hospital - Boston, MA
etc.

NHMike I'm trying not to drive my husband crazy with the back and forth decisions, and yeah I'm frazzled. I will check the Dana Farber / Brigham & Women's out.

PS - NHMike another reason I'm going nuts is he only had 6 of the Folfox treatments and this mess showed up. So I'm guessing time is of the essence here. Thank you for responding!

Zig2017 wrote:NHMike I'm trying not to drive my husband crazy with the back and forth decisions, and yeah I'm frazzled. I will check the Dana Farber / Brigham & Women's out.

Zig,

Please believe me when I say that I completely understand that you're frazzled. I think that everyone on this board understands it and has gone through it at one or more points in their journey and this is a place to vent if you need to. Also, please don't choose Dana Farber on my account. I chose them because I'm an hour away and they're a top hospital. I do not know where you are located but there are top hospitals around the country and I would choose something that's logistically manageable.

Hi ,
Just want to send our support to you and your husband and totally get the whole trying to find a solution in difficult circumstances without it adding more pressure to the situation .

The spread may already have been out there but this particular chemo has done nothing to hold it at bay . My mum had an immediate spread , we reckoned it had already been there but not showing . The chemo did hold hers back but as soon as she stopped it came back quickly .
I am no expert but you sound on the right track getting people to review that are more expert in that field . Someone once suggested doing a google search on research papers to see who is the expert in that field locally then asking them to review or to recommend someone . Just a thought.
Thinking of you too,
Take care,
Court

Hi Court that is a great idea! I was thinking of Sloan Kettering in Basking Ridge because getting into the city with tolls, parking, etc is a nightmare. I’ll google experts at Sloan and see what comes up. I’m much calmer today just very concerned. You guys rock. Thank you for being here. This forum in itself is a blessing to those of us newly navigating this.

Zig and I are going to Sloan. Yes logistically traveling far with a sick husband doesn’t work. Sloan is across the bridge and his cousin is going to find a name for us. By the way if I do get a name I’ll post it in case there are people in the NYC/NJ area. Read the pathology report again today apparent left lung has some sort of “clusters” on it and they recommend follow up. Gorgeous.... sigh. I want to do all I can for this man. I’ve known and loved him many years.

Zig2017 wrote:Zig and I are going to Sloan. Yes logistically traveling far with a sick husband doesn’t work. Sloan is across the bridge and his cousin is going to find a name for us. By the way if I do get a name I’ll post it in case there are people in the NYC/NJ area. Read the pathology report again today apparent left lung has some sort of “clusters” on it and they recommend follow up. Gorgeous.... sigh. I want to do all I can for this man. I’ve known and loved him many years.

I'm glad that you have a plan at a top hospital and hoping that they can provide a solution.

Thank you NHMike. Sometimes a nights sleep and a cooler head works wonders. I’m sure they will come up with something. Our local hospital is great, but I need some big boys on board with maybe other options. Sloan’s been doing this a long time. CTCA just gave me a weird feeling.

Went to Sloan today. What a difference! We spoke to Dr. Yaeger who is heading up a Phase III trial for BRAF mutation. She’s a wonderful oncologist. Mr. Ziggy got on the trial! This is really the best hope for his particular cancer and we are moving his care to Sloan officially. Our local oncologist was so nice, but this is a whole different level of care. She was candid and straight forward. Awesome day! - Mrs. Ziggy

Such good news. It probably feels good to have a real plan that could provide your husband with a positive response to treatment. It pays to get second opinions and go to reputable cancer centers. Especially for the tougher cases. I'm so happy for the two of you.

Thank you Susie. Yes this is a tough one and very fast growing. I couldn’t wait for a second line of treatment to not work. They are using drugs in the study that actually shut down signaling pathways. Right where these cancers are signaled to grow. Side affects could be tough, but it’s worth a shot! He can stop at anytime if it becomes too much, but he wants to try. And in Mr. Ziggy’s words “it could help someone else.” He really is an awesome person! Besides as his wife I love him and want to be sure everything is tried for him. He feels the same with way. I told him it’s your body, your decision don’t forget you can always say no! Quality of life is important too. It’s what he feels that’s important in all this.

I am checking in after a long absence and saw your post. I also have an aggressive form of CRC. I am two years NED and look forward to many more NED years. Good luck to your husband.