Question for Betsy

musiclover
musiclover Member Posts: 242
edited March 2014 in Colorectal Cancer #1
Betsy, I would love to pick your brain about what you've been through. I think hearing about your experience would really help my friend. You are the only one I've heard of so far that has been through the chemo regimen my friend is being encouraged to go on. I am printing your letter to take to him. I did a search and read some of your old posts so I know you had CRC. My friend had rectal surgery (TME) and it was a great success. Unfortunately, while they were doing the surgery they found a met on his liver (wasn't there on the CT scan four weeks prior to the surgery). A biopsy revealed cancer - he is now Stage IV. That surgery was done on Feb. 2nd and they have still not done a follow up CT. Nevertheless, they are moving forward with the chemo. No one has said he is inoperable (how could they without having seen a new CT?) and this chemo clinical trial is recommeneded for inoperable patients. Sorry to bombard you with questions but I'm feeling desperate. I feel like the doctors are not revealing all and they sure are taking their sweet time to do the follow up CT. Here are a few things I would love to know: Did you have colorectal surgery? How many mets did you have? Did you have a liver resection and/or RFA after your chemo? If so, how was the recovery? It sounds like you are doing very well from reading your posts. If there is anything you can tell me that you think would be helpful for my friend, please send it on. You can email me as well if you like at grimmmusic@yahoo.com Thanks so much!

Comments

  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #2
    Hi Musiclover - I'll email you.

    Realize that Xeloda / oxaliplatin / Avastin is not a clinical trial for stage IV or recurrent CRC patients. Doesn't mean it isn't a scary combination in the sense that all chemo drugs are scary. But when you are Stage IV you need to do something serious - even many avid fans of the nutritional approach do not recommend nutrition alone for Stage IV disease.

    But chemo for Stage II/III is usually considered adjuvant - preventative. Especially with Stage II, these patients probably don't have systemic disease. So the trial is about risk vs benefit. These drugs are serious. The risk vs benefit equation is different in the face of known metastatic disease (Stage IV) than it is in earlier stages. So a trial for adjuvant therapy is going to be a bit more cautious, I would imagine.

    Anyway, I will email you with my whole history. And I'll go back and check on your posts to remind myself of your friend's history. But I really do urge you to help your friend realize that there is hope.

    By the way I am hardly the only Stage IV survivor on this site - in fact my survivorship is in its infancy! There are others who have been healthy for years.

    Best wishes and watch for my email.

    Betsy
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #3
    Hi Musiclover -

    I did send you an email - from elizlwil@hotmail.com - just wanting to make sure you don't filter hotmail emails! Wishing you the best.

    Betsy

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