lovelife789 wrote:Btw thank you for the tips on icing the face during vectibix to keep the breakouts down. That's so smart of you. I remember putting ice on my forehead for fever during Erbitux a while ago and my forehead had visibly less breakouts, but I didn't think about the correlation between ice and breakouts
Lovelife
ginabeewell wrote:Sent an email to MSK with about four questions and they answered only one of them - confirming when to schedule my scan. Getting frustrated. I don't want my local doctor to be making calls about my treatment by default because I can't get Dr K to address whether I should reinstate irinotecan my next 2 rounds.
ginabeewell wrote:Sent an email to MSK with about four questions and they answered only one of them - confirming when to schedule my scan. Getting frustrated. I don't want my local doctor to be making calls about my treatment by default because I can't get Dr K to address whether I should reinstate irinotecan my next 2 rounds.
lovelife789 wrote:... was also given by my Dr at MSK a 'definitely' chemo for life option, I didn't take it well ...to say the least.
... MSK is not favorable towards maintenance chemo.
... I also go to MSK and have asked for it, they wouldn't give me claiming there isn't enough scientific data to suggest its effectiveness (never understand?!). But I have asked about Metronomic Chemo (low dosage chemo), they sounded more receptive to the idea.
Lovelife
FightCRC wrote:
What I'm about to say is strictly my observation, as someone who researched a great deal about Dr. Kemeny, and eventually became her patient.
And that's this: She is tireless. She is heroic. There is no one who is better with fighting liver mets. But...I've seen many, many instances where once it appears her expertise may no longer be a significant determinant in the patient's outcome...she turns her attention to those who still have a meaningful chance to be saved. Namely, new patients who need her help.
So we understood this going in and accepted those terms. Especially since if she wasn't like this, we probably wouldn't have had the chance to become her patient in the first place. When it came to HAI, we were all in; we were going to win or lose with her. No regrets. But anything beyond that, also meant we had to have other options lined up, to not have all our eggs in one basket. So we were prepared to pivot as needed.
You may need to pivot. As your disease is still limited to the liver, and MSK advises you that resection is not possible due to location, I highly recommend a consult with Dr. Yuman Fong at City of Hope. He's been able to help patients with difficult liver profiles that MSK couldn't. Certainly, there are no guarantees. But it's definitely worth getting Dr. Fong's take. We're the only CRC patients I've come across who had both Dr. Kemeny and Dr. Fong on their team, so have a lot of experience with both. Feel free to PM if you have any questions. All the best.
ginabeewell wrote:
This is interesting. I haven’t been able to do pump chemo since late May; which makes me wonder if that’s why she’s losing interest and not just that I’m not there live.
I’ve read good things about Dr Fong; perhaps time to make a call.
Thank you - I really appreciate this perspective!!
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