Long term treatment management

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Hi,

This coming month will also be four years for me since my stage IV rectal diagnosis (w/ numerous mets found right at the time of diagnosis in the liver and both lungs). I've also been on almost nonstop chemo- I had 2 or 3 breaks of between 2-6 months & it's been nonstop chemo now for the past two years now and I'm still going on it.
You've beat me by a couple of chemos- I've never taken Mitomycin, tomudex, or UFT. I've been on one you haven't taken, however- I've been on Gemzar (gemcitabine), 5FU (Xeloda part of the time), and Avastin since March 2010. My last two scans showed a slight amount of growth, but it was still within what they technically consider as stable. I have another scan coming up July 18th & we will see what that shows. I am always looking at what to do next to. The reason I went on the Gemzar was because the Irinotecan along with Xeloda and Avastin failed me (it worked two other times, but the third time I went on it, I had disease progression so they said it wouldn't work for me anymore). At that time, I looked into trying to get in on a clinical trial somewhere, but couldn't get in anywhere. I didn't qualify for most of them due to all the chemos I've already had and/or genetic testing didnt qualify me. I actually found two trials I did qualify for in L.A., but they were both full with a waiting list, so they didn't happen. Going on the Gemzar was based on the opinion of Dr. Lenz from Norris Cancer Center at USC in L.A. He's not my main oncologist, but i have consulted with him 3 times now (I live in north San Diego county, CA & that's where my oncologist is). There were two clinical trials on advanced colorectal patients taking Gemzar and Xeloda. The first study didn't have great results, but the second one had pretty good results & that was what his recommendation was based on. I had talked to my doctors about going back on oxaliplatin again. As much as I dreaded thinking about going on that again because of the side effects, I was willing to do it because that chemo gave me the most tumor shrinkage of all of them. The reason I wasn't put back on it was a combination of fear of more neuropathy and mainly because I had an allergic reaction to it. That reaction happened the very first time I took it, but I was able to continue on taking it by getting first infused with benadryl and steroids, then getting the oxi infusion slowly over six hours. I was able to keep that up until treatment #10, when I had another big allergic reaction in spite of the benadryl, steroids, and slow infusion- so they said no more ever again.
IF you didn't have any allergic reaction to the oxaliplatin, I'd talk to your doctors about trying that again. the oxi is so darn toxic, that I'm personally scared of it, but you do what you have to do, right?!

In February of this year, I sought out a naturopathic doctor to help support my immune system from all the ongoing chemo & also hopefully take something that can also help combat the cancer. Fortunately, my oncologist is a pretty open minded guy who was okay with me doing most of what I was wanting to do (some sauna therapy to detox heavy metals and chemicals in my body and taking several mineral supplements and herbs to boost my immune system, raise my alkaline ph level, and attack the cancer cells). I honestly don't know yet if they are doing anything against my cancer, but I do know that my red blood counts have definitely improved since I started this all. Gemzar's main side effect is that it causes very low platelet levels. Since I started the supplements, I literally have had every weekly blood test show normal levels for my platelets! So, I think that makes it worth doing, as my body can handle the chemo easier.

If you want anymore info on what I'm taking specifically, send me a pm. On a side note, I realized recently that some of my supplements were causing me a great amount of nausea. So I stopped them all for a couple of weeks and am now slowly reintroducing them into my system so I can figure out which ones were causing the nausea. So far, I'm feeling good again.

Take care & best wishes-
Lisa