O Stoma Mia wrote:Just a few questions at this point:
Do you have the number/identifier of the clinical trial so that we can look it up in the Clinical Trials registry?
What are the plans for surgery? Are they planning on surgery after both the Folfox and the radiation sessions have been completed? Does the clinical trial allow that?
Are you sure that the staging is correct? My understanding of staging is that if the tumor is invading other organs, then this would be at least a T4aN0M0, or T4bN0M0 staging, i.e., Stage IIb or Stage IIc
NHMike wrote:A very hard decision.
I had a much larger tumor (100 cm^3) and I think that I'd credit the radiation for doing more of the work than the Xeloda though the Xeloda likely checked any spread. My personal opinion is that the 5FU/Oxaliplatin was tougher on my than the Xeloda/Radiation. I think that either approach will be challenging but you may get to skip surgery at the end.
lakeswim wrote:NHMike wrote:A very hard decision.
I had a much larger tumor (100 cm^3) and I think that I'd credit the radiation for doing more of the work than the Xeloda though the Xeloda likely checked any spread. My personal opinion is that the 5FU/Oxaliplatin was tougher on my than the Xeloda/Radiation. I think that either approach will be challenging but you may get to skip surgery at the end.
Hi NHMike.
What does 100cm>3 mean? And I'm not sure what Xeloda is? Is that the chemo I will take with radiation?
What do you think would be the downside of starting with radiation? Has anyone on here done it that way?
Sounds like lots of fun. You people are a tough bunch. I feel so good now (no symptoms really but blood in stool) and am healthy for the most part (outside of stress) - so I dread this. I had two babies naturally and that was enough pain for a lifetime. I guess we do what we have to do.
Thanks...
lakeswim wrote:...
And how do I get feedback from folks who may have tried this trial? I'd need to do that ASAP because my oncologist plans to call me imminently.
Thank you for the information!!
lakeswim wrote:Hi Juliej.
I already had some misgivings about the trial - esp given the way they threw it in my lap (literally) while I was in the middle of my chemo clinic appt (which was already overwhelming enough) and are clearly trying to rush me through to a decision, but given the things that weissmom mentioned about vaginal stenosis, etc. and the other nasty side effects of radiation, I am no wondering if there are any reasons relating to these side effects alone to do it one way or the other. And I'm sure they don't have answers to it (it's probably not on their radar!).
That said, there was conversation yesterday about the trial and they said I'd get "extra attention" being on the trial and would be "monitored" better (esp if we do watch and wait) and they would be "followed more closely" (as clinicians), which all sounded like positive things to me. (Yet still like a sales job, TBH.) Anyway, thanks for your feedback. I will ask CC when I get there and see what they say.
This is all so bizarre. When do I wake up from this nightmare? (And when do I stop thinking that this may not be real?)
Thanks so much,
Susan
juliej wrote:... The main thing is to keep asking questions until you understand all the risks involved with any treatment or clinical trial. It's your decision. Don't be afraid to gather all the facts and then decide...
O Stoma Mia wrote:juliej wrote:... The main thing is to keep asking questions until you understand all the risks involved with any treatment or clinical trial. It's your decision. Don't be afraid to gather all the facts and then decide...
Lakeswim -
Have you decided yet about participating in the clinical trial? What Juliej said is very important. You need to keep asking questions until you fully understand what would happen to you if you were to sign up for the trial. Since this is a clinical trial conducted in the U.S., it is covered by U.S. Federal law. The law in question is the law designed to protect human subjects who agree to participate in research clinical trials. The doctors are required to answer all of your questions. It's your right to ask these questions. You shouldn't be afraid to gather all the facts before deciding, because the law is on your side.This law is known as:
Code of Federal Regulations, Title 21, Section 50.25 - Elements of Informed Consent
lakeswim wrote:... Would you say radiation side effects are much worse than chemo - or does that highly depend? And must I even DO radiation? ...
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