Jack&KatiesMommy wrote:Are you MSI or MSS?
Jack&KatiesMommy wrote:Have you had your Tumor Mutation Burden tested? I won't go into the whole story here but I am MSS also and because I had my tumor tested at Foundation One they also determined my Tumor Mutation Burden. I had 12 mutations which was a lot for an MSS tumor. So because of that my oncologist got permission to use Keytruda off-label (normally they don't use it on MSS patients) and it is working for me. Is this a possibility for you?
zephyr wrote:After the initial CRC surgery, 2 years of chemo, and 2 thoracotomies, I had a clean CT. Fast forward 3 months and I now have 3 suspicious lung nodules. I was already chemo resistant to everything that would work on my genetic mutations so I need someone who will think outside the box this time around. I'm looking to get a second opinion at either MSK or MDA. Can anyone here recommend a top CRC-lung specialist at either of those hospitals (or any other major cancer center)? Any other advice would be appreciated.
Thanks in advance.
Pyro wrote:
You’ve been through a lot, do you think the surgeons will play wack-a-mole again?
behconsult wrote:I'm sorry your are dealing with more mets. I do not know about either place. I do know that UCLA has a powerhouse lung program. It is at that location cryo for pulmonary mets was pioneered.
You see Saab and he is pretty knowledgeable and also quite flexible. I fly out this weekend to visit him. Also note that whack-a-mole is not a bad strategy. My IM doc believes that the gene therapies being done are so close that it a matter of time. Sending prayers your way! Bob
Butt wrote:Dr, Wayne H. In MDA. I can’t recall his last name. You may want to hurry up because they can do things on max 5/6 mets and if more appear they won t do anything. I am considering YAG in Germany and already sent them my scan. Is there any way I can contact you to ask a few questions about YAG surgery. Thank you. Butt.
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