Trials

chicoturner · May 2010

Hi, I am having mixed emotions tonight. I was called today by a clinical researcher from UCSF about joining in a clinical trial. I have basically been told by my onc and onc at UCSF that there isn't really much for me to do except trials. I am stage 4 with nodules to the lungs. I have already tried oxy, irronotecan with avastin, had a resection and only have the nasty nodules in my lungs. They are small, but growing with my last scans showing some new ones. I was hoping for a trial, but now that it is being offered and after reading all of the paperwork, I kind of feel like I did at the beginning of all of this!I have been off of treatment "resting" for about 3 months and feel better then I have in about 2-3 years! My hair is growing back and I really thought I didn't care, but today found out I care more then I thought! I really have nothing to lose in doing the trial, but feel scared. Maybe I'm afraid if it doesn't work, then what! I kind of like knowing it is out there! Anyway, my next hurdle is qualifying for the trial. One test at a time! Thanks for listening! Jean

msccolon · May 2010

I'm sorry you're feeling anxious
It's completely understandable as you head into a new treatment option. After what you've already been through, it makes sense that this is making you nervous. I'm sure as you get the paper work done and get closer to entering the trial you will feel better. It's the unknown that's making you nervous and there's just no getting around that! I pray you are accepted into this trial and that you get good results from it! Options are good!

mary

John23 · May 2010

Opinions

Re:
"I have basically been told by my onc and onc at UCSF that there
isn't really much for me to do except trials. "

The rule of thumb is to ALWAYS get a second and third opinion
from a qualified surgeon before undertaking any life-changing
procedure; Chemotherapy, radiation, etc are all life-changing
procedures - Cancer is a life changing event.

The "other opinions" should always come from physicians
outside the initial association or group that the original physician
belongs to, and out of town, is best.

The problem with "trials", is that many give some clients placebos
as part of the testing. You should find out of this will be the case,
since spending months taking a placebo might be wasting your
very valuable time; time that could have been used to try any
other alternative (including other standard chemo concoctions)
that are already available and have some credibility.

There are many on this board, that have used other than conventional
western medicine to conquer a "no-win" situation, so please never
give up hope if some physician tells you there's nothing left to try;
there are plenty of "other things" to try that physicians have no
knowledge about and consequently will not support.

The bottom line right now? Get another opinion or three from
qualified surgeons (and physicians) that are not of the same group
or association, and preferably not in the same town.

Good luck and better health to you!

John

tabur · May 2010

Hi Jean
My wife Pam is now going thru a very similar situation. She has Stage IV w/mets to liver, currently inoperable. We've been to two oncs and even a surgeon outside the loop. We were hoping the regiments that she was on would shrink the tumors enough for resection. Her scan from a week ago was very dissapointing. The tumors were growing with two of the larger ones more than doubling in size. We have been thru several of these regiments in the past year and a half, all with the same dissapointing result. Now we too were faced with a decision: try another regiment with an even lower success rate or try a clinical trial.

We opted for the clinical trial. Her onc had info on 6 different trials and we discussed them to some length. John is right that some trials use placebos but that information is available in the synopsis. Her onc wouldn't even entertain a trial with placebos, he called them "cruel". For example, here is the URL for Pam's trial:

http://clinicaltrials.gov/show/NCT01051596

In my opinion, the cure for this disease will most likely be discovered in a clinical trial. Not a treatment, a cure. In the meantime, longer lasting treatments will also be a result.

Please keep us posted. We'll be "off the grid" for a week (camping trip) but we'll check back when we return.

Al

chicoturner · May 2010

Trials
Hi , thank you for the sound advice! Actually my onc here in Chico refered me to UCSF and I was review by the GI oncology group there. I feel pretty good about the plan. I have all the literature on the trial and drugs. The 3 drugs they will be using are being used in various doses. I am the last one in the test group and will receive the highest dose. The nice thing is if I cannot tolerate any one of them, they will lower it and I can continue. The drugs are already in use, but are being used together in a new way. The colon drug is Avastin, which I have already taken and tolerated very well, but needed a beak from. I have a complete physical this monday, with ekg, labs and such to make sure I am ready to start. If not, I will wait a month. From what I read there are no placebo's just different doses. My new onc called me tonight to make sure I was doing ok. She remined me that with this trial they do no expect to "cure" me, but to hold the tumor growth and keep me healthy. She said if it works well for me I can stay on it as long as it works and I tolerate it. Hopefully until the "cure" does come along. Anyway, I do feel much better about it all now that I have done somemore research and talk with all of you. I am waiting for insurance approval so it is all still up in the air, but we have a plan to begin it this next Wed. I will go to SF Mon. am and plan to stay until Thurs. unless we do get a clearance from ins.co. I hate it that they can rule our lives so much!! Yet I really shouldn't complain as they have so far approved everything. Thank you for your encouragement everyone! Jean

Trials

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