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Phase I Clinical Trial ... Scared ... looking for info, opinions, etc.

donnare
Posts: 266
Joined: Jun 2009

After lots of ups and downs, 3 years on weekly chemo while working full time, a successful colon resection, an unsuccesful liver resection, 3 blood clots, a bowel obstruction, and a nasty blood infection, my husband has been told that the cancer has moved to a lymph node outside the liver. A liver resection, SIR Spheres, HAI pump, etc. now all seem to be off the table and they have told him that all that is left is a Phase 1 Clinical trial with experimental drugs.

He is treating at Fox Chase in PA and so far, we have been very happy with his docs, treatments, and some of the nicest nurses on the planet. We are both really scared about the clinical trial though and would welcome any info, opinions, etc.

Here is my question, and I'm just going to put it out there. We got used to our "new normal" of weekly chemo with him not feeling so well from time to time, but continued on with our lives. He was initially told at his dx (not at Fox Chase) that he could expect 12-24 months, and he has already done much better than initially told. So my question is, are we at the end now? Folfox stopped working, so they changed him to Folfire. Now that it isn't working, surgery isn't an option, so isn't the clinical trial stage where they are just working to find drugs for future patients, especially the Phase 1 trials with experimental drugs?

I feel like we are falling through space, just waiting to hit the ground.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

I have no answers for you but just wanted to show you some support....sounds sort of weak writing it, but cancer is such a tumultuous journey and feels like a very lonely one as well.
Here's hoping the clinical trial helps~

donnare
Posts: 266
Joined: Jun 2009

thanks so much ... appreciate the support.

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pepebcn
Posts: 6352
Joined: Aug 2010

Hugs!

donnare
Posts: 266
Joined: Jun 2009

they didn't mention radiation to us ... bascially they said because he was dx with colon cancer with over 11 mets to his liver, they know it is on the move in his system and the therapies available have stopped working. Thanks though, I will mention the radiation.

janderson1964
Posts: 2215
Joined: Oct 2011

Has he done Erbitux or Vectibix. There are also 2 drugs on the FDA fast track for approval this year. One is a chemotherapy. The other is a targeted therapy that attacks or stops 4 different growth factors. It is made by Bayer.

donnare
Posts: 266
Joined: Jun 2009

He has been on Erbitux for quite a while now and was getting a good response, but I guess it stopped working. I will mention those drugs and the targeted therapy to his doc ... thanks for the info!
Donna

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Trapbear
Posts: 109
Joined: Sep 2009

HI Donna,
The Bayer drug is regorafenib, it is not yet approved, probably this Fall at the earliest. IT may be available for compassionate use? Looks very promising in stabilizing disease, most common adverse event is hand/foot syndrome (like with Xeloda). Best of luck, hang in there!
Bill

janie1
Posts: 753
Joined: Apr 2011

Did they give you info on the trial? Do you have a number on it and would it be at Fox Chase?
(I wouldn't totally rule it out.). I would read about it. It
may be something that could be done soon, and then go with something else later when available.
And like Trapbear said, the Regorafenib might be available sooner for some.
Did the onc not mention that?

donnare
Posts: 266
Joined: Jun 2009

Thanks for the info Bill -- will look into it now.

Janie - yes, they gave us all the information on two Phase 1 trials they have available at Fox Chase,and they have numbers, etc. His oncologist also gave us a website for all current clinical trials and said she would discuss and look into any we were interested in. Feel like I am in a little over my head, but felt like this at the beginning of the "C" nightmare too. Thanks for your post!

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

Have you considered a second opinion? Perhaps at Sloan Kettering in NY?

I realize you are already working with an NCI hospital, but a number of folks have had very good results with Sloan. Just a thought.

Marie who loves kitties

donnare
Posts: 266
Joined: Jun 2009

I've suggest MSK and a second opinion. My husband is a little resistant, because of the distance involved for us, but he might be more open when he is feeling better. Right now, he is really feeling poorly, and I think probably a little depressed too.
Thanks, though, I am going to bring it up again.

donnare
Posts: 266
Joined: Jun 2009

sorry posted twice

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I don't have the complete scoop on clinical trial and how they operate right now. I know if I were participating in one, I would want to be in the control group that "received" the test drug in question - that's assuming I had a choice in the matter.

The 'not knowing' if I received the test or drug would be difficult mentally for me. Would just leave me too many 'unknowns.' I'd want to take my chances with the experiment and where that took me.

Folfox and Folfiri are the heavy hitters...5fu by pump or pill as Xeloda...the inhibitors as Erbitux and Vecitibix...and as mentioned perhaps that new drug coming down the pike.

And of course, clinical trials if one can qualify.

I'm sorry that the surgical options have been tabled at this time. I know you were hoping for that option as we all do...it helps us the most when we qualify for those.

2nd opinion might help as a sounding board to either rule out or confirm the current diagnosis. Since they nixed Sir Spheres (form of radiation I believe) then I'm not sure if another type of external or conformal radiation would be an option - but it doesn't hurt to ask anyway.

You guys have certainly done alot of the things available. I'm hoping something will click for you guys:)

-Craig

donnare
Posts: 266
Joined: Jun 2009

Thanks for responding .. always good to hear from you. We've been told that he will definitely "receive" the drug; he didn't want to be part of a trial where he might not be in the group that got the drug for the same reasons you expressed.

Fox Chase has two trials that he can take part in starting mid May. Spent most of the day reading about them and reading the consents. Definitely leaning towards 2nd opinion too - most likely MSK.

Thanks again Craig - for the good wishes too!

Donna

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