MSI-H with liver met, in search of help

[Reviresco]

I am MSI-h, (MLH1 and PMS2) not Lynch. I did full 12 rounds of folfox and had a recurrence within 5 months. Multiple Mets to lymph nodes all over abdomen, chest and neck. We watched a lymph node in my neck grow 3 cm while doing 2 rounds of folfiri. Then I started Keytruda and within 3 months all my tumours had shrunk by 50%. I am a year in now with just a few involved nodes shrinking or remaining stable.

All that to give you a back story to my advice. I would get on immunotherapy right away and watch what it does. We scanned after 3 rounds and it was amazing to see the results - though it was apparent in my rapidly recovering health anyway. Definitely don’t waste any time on more chemo if it hasn’t shown any positive results. If the immunotherapy isn’t showing shrinkage after a few rounds then I would plan for surgery.

Immunotherapy can be much easier for the body to handle. I am doing so much more living than I was able to in chemo.

As a Canadian I have no advice on drs. But please keep us informed of your progress.
Beth

Thanks Beth! Awesome news about your response to Keytruda. Let's keep these positive stories rolling!

[Reviresco]

Hope things work out for you and you have a great team to handle your case.

Hi again Henry - Both my local and Dana Farber teams recommend surgery now, because I'm a candidate for clear margin resection and only two visible lesions in the liver. Oncologist doesn't want to risk that I might not respond to immunotherapy, and then become inoperable in the interim. I will keep you posted and please do the same.
Trevor (Reviresco)

[Wonderfullymade]

I am MSI-h, (MLH1 and PMS2) not Lynch. I did full 12 rounds of folfox and had a recurrence within 5 months. Multiple Mets to lymph nodes all over abdomen, chest and neck. We watched a lymph node in my neck grow 3 cm while doing 2 rounds of folfiri. Then I started Keytruda and within 3 months all my tumours had shrunk by 50%. I am a year in now with just a few involved nodes shrinking or remaining stable.

All that to give you a back story to my advice. I would get on immunotherapy right away and watch what it does. We scanned after 3 rounds and it was amazing to see the results - though it was apparent in my rapidly recovering health anyway. Definitely don’t waste any time on more chemo if it hasn’t shown any positive results. If the immunotherapy isn’t showing shrinkage after a few rounds then I would plan for surgery.

Immunotherapy can be much easier for the body to handle. I am doing so much more living than I was able to in chemo.

As a Canadian I have no advice on drs. But please keep us informed of your progress.
Beth

Sorry! I did not see this thread until now!
I have the almost the same story as Beth ( see my sig) it would have been nice to have be able to start with Keytruda, but am SO grateful I was able to go on it at all! It was not approved when I started it, but my Dr convinced the ins co to give it to me off label, as a last ditch effort. Today is my 57th birthday....I honestly didn’t expect to being able to celebrate it!
I dont know of a Dr in your area either...I went to The Mayo Clinic in Rochester MN.
I see in a later post you are able to go for resection! Yahoo! I will be thinking of you and sending NED thoughts your way!
I have a scan scheduled for December 10th...my hope is to tell you all I am still NED!
For my US friends...have a great Thanksgiving. Everyone else, have a great day anyway
Wonderfully made

[Reviresco]

Maybe not even mess with liver met.
Hopefully immunotherapy would take care of that too.

Hey Henry -- I'm going for liver surgery this coming Wednesday, Nov. 28 at Central Maine Medical Center. It's a team of two surgeons who come highly recommended by my Dana Farber onc. They are going to explore with laparascopic opening, and ultrasound the whole liver. If they just see the two small mets previously confirmed by MRI, they will do the open surgery and remove them segmentally (preserving most of my right lobe), or will take the whole right lobe if necessary. But if the ultrasound shows mets on the left lobe, they will just close up the laparoscopic incision, and we will circle with my local and Dana Farber oncologists to decide if we want to start immunotherapy instead. There are lots of ways this thing could go, but I feel that I have a team of smart doctors who are collaborating and they all care very much about getting me to NED. Thanks for your support and inspiration!
Trevor

[boxhill]

Trevor, I just saw this thread. I also live in Maine, but in the Portland area, so my hospital is Maine Med. My surgeon was Juan Palma Vargas, and he did a great job, especially from my POV in finding a tiny liver met by feel and removing it. It didn't show in the ER CT scan, and things might be quite different for me had he not been so thorough. He is actually a liver specialist, and I would feel comfortable going to him should there be any further liver mets. My local oncologist, Matthew Dugan, is with New England Cancer Specialists, and I like him--and nursing staff at NECS--a lot. He sent me for a consult at Dana Farber before starting chemo. I was unable to get a timely appointment with the first person he recommended, Dr. Kimmie Ng, so I saw Dr. Giannakis instead. He's a lovely man. I am also MSI-H, but thankfully not Lynch, or a total hysterectomy would have been in the cards. Anyway, all concerned thought that FOLFOX was the best option, with Keytruda in reserve if necessary. I had clean scans a few months in, and just had post FOLFOX scans a week ago that were also clean. So far so good.

I hope this procedure goes well for you. The plan makes sense.

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