I am on Facebook for the single purpose of accessing the Colontown Facebook groups. I find them to be incredibly useful, especially the groups addressing clinical trials and new treatments, because of the input from a large number of patients and researchers. I’ve also learned a lot and gained suppo...

My husband’s cancer was in many lymph nodes—the surgeon removed 20+ and his nodes remained clear until about 2 months ago, when folfiri stopped working. Now he has 3 or 4 in the same para aortic area that are enlarged again. He’s done 2 rounds of bot/bal, but we won’t know whether it’s working until...

I have read some stories of people having some success on immunotherapy with widespread metastasis, but most of the immunotherapy trials we’ve looked at exclude those with liver metastasis in particular (including bot/bal) because the therapy has not worked for them. The results seem best for those ...

Where is his disease currently? Immunotherapy like bot/bal has shown effectiveness with lung Mets, but not much outside of that. Also, the bot/bal trial is closed so the only way to get the drug combo currently is through compassionate use (what my husband is doing now.) No risk of getting randomize...

Hey thanks for checking in! He’s only had one dose so far of the combo, and the first night was rough—nausea and vomiting and diarrhea. Since then, he’s had nausea on and off and some fatigue, but tolerable, kind of how he felt on folfiri. He won’t be scanned for at least 2 months.

I’m sorry recovery has been hard, but it sounds like you are doing amazing. 5k twice a day is more than most people do!

I don’t know the answer about your local recurrence question, but we have found that MD Anderson has lots of hoops when trying to get a second opinion or info about a clinical trial. MSK was easier to work with. Have you tried Dr Fakih at City of Hope, closer to you? They are also very easy to work ...

I’m so sorry to hear about the scans. Will you meet with your oncologist before chemo tomorrow? I would either message or call the oncologist about changing the plan.

That trial looks promising—our oncologist thinks combining anti-pd1 immunotherapy with other inhibitors, and not just ctla-4 is the key to making immunotherapy work for MSS patients. I hope this one provides some benefit for you!

Yes, definitely. He will hopefully be starting in the next 3 weeks. There seems to be a lot of red tape to get the drugs.

Update on bot/bal trial: the phase 2 trial closed before my husband could get in, and phase 3 trial will be for first-line patients only. But! His oncologist applied to the company for compassionate use access to the drugs and we were approved, so he will be starting in 3 weeks, after Folfiri washou...

I would guess your CEA jump is from the new lung nodules. But it doesn’t necessarily mean the folfox won’t work to knock them down again. My husband’s cancer also makes a lot of CEA and his has always shot up with any progression, but also each time he changes treatment. Usually it takes 2 months on...

I’m sorry to hear the trial didn’t work for you. Keep us updated as to what you try next.

One year stable on a trial is great, congrats!

Thinking of you!