2nd Opinion @ MD Anderson

[keisler69]

Hello All,

We are new to this forum, but I feel like we may be in the right place for some much needed guidance. My fiancée was diagnosed with Stage IV colon cancer May of 2017 after a 12in colon resection (later found 7 nodules in his lungs). He started Chemo in June, Folfox with Avastin, finished his 12 rounds in December, he then started his maintenance (minus Oxiliplatin) in January. His maintenance is supposed to be from here on out... We decided to go for a 2nd opinion at MD Anderson after his last scan only showed stability according to his oncologist here in SC. First appointment @ MD we learned that 2 of the 7 nodules had disappeared based on his last scan in SC, but that was never told to us. After they conducted their own scans, we learned that the remaining 5 nodules have slightly grown AND there is a new spot of concern in his colon. The doctor recommended starting Folfiri with Avastin, maintenance doesn't seem to be doing enough, follow up in 3 months. .... We come home and consult with our oncologist and there isn't much concern about the growth, it could be considered stable to her, but his inflamed spleen is her biggest worry. ....

HELP!!!! Has anyone else had encounters like this? Whose opinion/concerns are right?? Also, what are the pros and cons of Folfiri?? He had NO major side effects with Folfox, except for fatigue and some minor neuropathy in the end.

I am more confused than EVER... ANY AND ALL HELP IS WELCOMED <3

[Lee]

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

Has he had a PET scan or a PET/CAT scan?

MD Anderson is one of the best cancer hospital in USA.

Immunotherapy is showing great promise. Keytruda has been approved for colon cancer.

Here is a link about Celine journey. She went from months to live to NED.

viewtopic.php?f=1&t=49736

Good luck,

Lee

[juliej]

Getting a second opinion is always a good idea so kudos to you for going to MD Anderson! You didn't say if your local cancer center is a NCI-designated cancer center, but that would be my primary concern. If it isn't, I would go with the advice of MD Anderson. Or even get a third opinion at another NCI-designated cancer center.

Here is a link to find out if your local center is NCI.

https://www.cancer.gov/research/nci-role/cancer-centers/find

I would also highly recommend genetic testing so you know which treatments will work best for your fiancée. Genetic tests should include KRAS, BRAF, MLH1, MSH2, APC, MSH6, PMS2, and MUTYH. Additionally, testing for MSI or MRI status (MLH1, MSH2, MSH6, PMS2) lends information for the option to use pembrolizumab (Keytruda), a PD-1 inhibitor, and part of a new set of exciting immunotherapy drugs that are coming out right now so make sure he gets it too. The key is finding out his cancer genomics so you know which treatment is best for him.

As a personal aside, I went for a second opinion at an NCI center after my local cancer center said I was inoperable and basically on chemo until it quit working. I got a second opinion at Memorial Sloan Kettering in NYC and followed their advice about my treatment. Truth-be-told, I would not be here now writing you if I hadn't went to them. I owe them my life.

It sounds like the MD Anderson onc wants to change up his chemo and see if his lung nodules respond better to Folfiri + Avastin. Nothing wrong with that, but I would definitely ask about the genetic testing and about the possibility of immunotherapy combined with traditional chemo. MD Anderson is one of the institutions at the forefront of research in this area.

Hope this helps!
Juliej

[NHMike]

I would also highly recommend genetic testing so you know which treatments will work best for your fiancée. Genetic tests should include KRAS, BRAF, MLH1, MSH2, APC, MSH6, PMS2, and MUTYH. Additionally, testing for MSI or MRI status (MLH1, MSH2, MSH6, PMS2) lends information for the option to use pembrolizumab (Keytruda), a PD-1 inhibitor, and part of a new set of exciting immunotherapy drugs that are coming out right now so make sure he gets it too. The key is finding out his cancer genomics so you know which treatment is best for him.

Hope this helps!
Juliej

Testing for all of the gene mutations can be done in one shot with genomic tumor testing. You send your biopsy to a lab and they will check for several hundred gene mutations and the information may be useful for immunotherapy.