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by Amarie123
Sat Oct 05, 2019 7:29 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Got post-op staging
Replies: 20
Views: 1436

Re: Got post-op staging

Just wanted to pop in to say that when you see N2 (or N2a), it means that there where between 4-6 lymph nodes effected, so this looks correct. 7 or more lymph nodes would, I believe be characterized as N2b.
by Amarie123
Fri Oct 04, 2019 6:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lonsurf- anyone currently taking?
Replies: 14
Views: 1247

Re: Lonsurf- anyone currently taking?

Any time! I hope your husband has some success with it!
by Amarie123
Fri Oct 04, 2019 3:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lonsurf- anyone currently taking?
Replies: 14
Views: 1247

Re: Lonsurf- anyone currently taking?

A Lonsurf cycle is about 28 days, give or take.
5 days on, 2 days off, 5 days on, 2 weeks off. Bloodwork is then checked and if WBC count is ok, the cycle starts again.
by Amarie123
Fri Oct 04, 2019 2:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lonsurf- anyone currently taking?
Replies: 14
Views: 1247

Re: Lonsurf- anyone currently taking?

I just finished my second round of Lonsurf two weeks ago and start the third one soon. So far it’s been fine, with the only side effects being fatigue, minor diarrhea and mouth sores. The mouth sores were tough but I was given a prescription which seemed to help. They will do scans after the third c...
by Amarie123
Wed Oct 02, 2019 7:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How long oxilaplatin can be taken?
Replies: 6
Views: 723

Re: How long oxilaplatin can be taken?

I did 11 cycles of Oxaliplatin- though not with xeloda. I did 2 on FOLFOX and 9 on IROX (oxali+irinotecan). The neuropathy side effects were pretty intense in my hands and feet (moreso in my hands) during treatment. It’s been 3 months since I stopped and I do have some residual effects in my feet, b...
by Amarie123
Mon Sep 30, 2019 5:38 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung met treatment options please
Replies: 3
Views: 612

Re: Lung met treatment options please

What are options your team has suggested? Before my liver met was known, I had multiple lung mets about the same size (8mm). Chemotherapy was the best option at that time. I wasn’t offered surgery or radiation given the number and size. Has that been offered as an option other than chemo?
by Amarie123
Mon Sep 23, 2019 3:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Thoughts on Stage IV...
Replies: 24
Views: 2167

Re: Thoughts on Stage IV...

Yes I did exactly this and felt my heart sink as well. This forum is helpful to me as well seeing so many who have done well for many years. I believe that the survival rates are somewhat skewed in that they reflect patients who receive no treatment. I could be wrong but someone (though I can’t reme...
by Amarie123
Sat Sep 21, 2019 9:38 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Do I need to eat meat during chemoradiation?
Replies: 11
Views: 556

Re: Do I need to eat meat during chemoradiation?

I would agree to follow your doctor’s guidance. The goal is proper nutrition with enough protein to maintain your strength and your weight. Beyond that I was told (and believe personally) that there is no right or wrong food but rather food that you can tolerate and enjoy eating.
by Amarie123
Fri Sep 20, 2019 6:13 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Do I need to eat meat during chemoradiation?
Replies: 11
Views: 556

Re: Do I need to eat meat during chemoradiation?

While on chemo, my team advised me to eat whatever I can tolerate. I was never a huge meat eater but ate a little more than usual on chemo due to my anemia and occasional craving for red meat. A little more than usual for me was about twice per month, however. The goal is to get enough protein so if...
by Amarie123
Wed Sep 18, 2019 4:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Insurance denied husband’s genomic testing
Replies: 14
Views: 663

Re: Insurance denied husband’s genomic testing

Great news!! Apparently Yale went forward with the Oncomine testing despite the insurance denial!! They have the results and have shared them with my husband’s local oncologist....we meet with him Friday to discuss....we also head to Yale in 1 week to meet with the Phase 1 director there....Yale wi...
by Amarie123
Tue Sep 17, 2019 5:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Insurance denied husband’s genomic testing
Replies: 14
Views: 663

Re: Insurance denied husband’s genomic testing

MGH does the testing on-site - they don't send it out. So they may have more flexibility. They did mine for free too. [/quote] The Guardant360 testing appears to be genetic testing for genes related to a variety of mutations. That would have been a blood test I think.[/quote] Yes, it was a blood te...
by Amarie123
Tue Sep 17, 2019 3:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Insurance denied husband’s genomic testing
Replies: 14
Views: 663

Re: Insurance denied husband’s genomic testing

My testing was denied by my insurance company as well and my oncologist appealed. They actually denied the appeal and the hospital paid. He said MGH has a “fund” for such situations. I would ask if they can appeal and what, if any, other options exist for payment. MGH does the testing on-site - the...
by Amarie123
Mon Sep 16, 2019 9:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Insurance denied husband’s genomic testing
Replies: 14
Views: 663

Re: Insurance denied husband’s genomic testing

My testing was denied by my insurance company as well and my oncologist appealed. They actually denied the appeal and the hospital paid. He said MGH has a “fund” for such situations. I would ask if they can appeal and what, if any, other options exist for payment.
by Amarie123
Sun Sep 15, 2019 5:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Help with bowels
Replies: 57
Views: 4010

Re: Help with bowels

I had my sigmoid colon removed last November and understand this feeling completely. I remember how frustrating it was. Initially I took miralax and colace but found they didn’t help much. I ended up using milk of magnesia on a regular basis for a few months which helped but it didn’t help me regula...
by Amarie123
Sun Sep 15, 2019 8:37 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lonsurf- anyone currently taking?
Replies: 14
Views: 1247

Re: Lonsurf- anyone currently taking?

Not terribly helpful, unfortunately, but a KRAS mutation does not disqualify you from immunotherapy, at least not from Keytruda. I would guess you are MSS, which would be the problem. Sorry, I don't know anything much about Lonsurf or Stivarga, other than that my onc mentioned them as something we ...

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