grateful for any advice on clinical trials...

dash4

Hello everyone,
Many of you know my husband's story, but for those of you that don't--Stage IV 10/04. One month chemo (5FU leucovorin, irinotecan and avastin), surgery 12/04(colon resection, liver resection and ablation), continued with chemo till 8/05 (at the end had 2 times with oxaliplatin). Told he was NED, his pain returned in 2 weeks and took till 10/05 to find reoccurence in abdomen and chest. Since, 11/05 has been having weekly erbitux and biweekly irinotecan. There has been slow progression, but basically all has been stable. His last scan - 2 weeks ago - showed some definite progression. At the moment we are staying with the current chemo regiment, but know there is a possiblility in the future it may just not be effective anymore. We need to be ready for our next decision.
I am now gathering all I can understand about clinical trials. My husband wants to look into that option. This site is such a wealth of information. I am hoping someone has words of wisdom and some guidance. I am feeling like we have been "sucker punched" with our new info. But, as my husband has said "this is our new phase". And so it is... Anyone with any info on clinical trials and what questions to ask, where is the best place to look - just any info you think would be helpful. Thank you,
Mary Kay

kristasplace

Hi Mary Kay! My heart and best wishes go out to both you and your husband.

Has the oncologist given you any clinical trial options? There are always trials going on, but not everyone qualifies for all, or any of them. Maybe check the teaching hospitals websites like UCSD, or whichever medical school you're near. Some of them talk about clinical trials.

Many hugs,
Krista

Good luck, and keep us posted!
Many hugs,
Krista

shmurciakova

I can only say Google "C3" and check out their website, I believe there is advice about current trials.
Best wishes on this next leg of your jouney,
Susan H.

cptmac22

When I was originally diagnosed with Stage IV cc with liver mets in July of '04, I signed up for a Stage II clinical trial. I have been NED since September of '04. I knew I wanted the possibility of better odds than what I had.

Not too many people sign up for clinical trials, but I've always been fascinated with the new. But this trial seemed really good for me.

I had read about the trial even before I saw my oncologist. He explained it even more so to me.

Let me know what questions you have or what info you'd like to know.

My trial was, having my colon resected on August 13, 2004 (Friday the 13th no less). I had to have my liver resected exactly four weeks later and have an HAI pump inserted.

I then had Irinotecan as systemic chemo and had HAI with FUDR to put chemo directly into my liver.

HAI has been an effective tool for those of us with Stage IV and that have used it. However, you must qualify for the trial, and different people qualify for different trials. So you'll need to work with an oncologist to find the right trial for you.

My trial has been so successful, it has moved to a Stage III trial. It takes a long time before it become standard treatment. That's why they always say we're about 10 years from finding a cure. Because it takes about 10 years of studies before drugs can become approved.

Because I've been so successful, I've talked to other doctors at other facilities about my treatment. I'm getting ready to speak to 20 - 500 people about my trial on the 25th of April. I was the second person at my facility to sign up for the trial and I've done extremely well.

So, let me know your concerns or what you'd like to know about trials. If you haven't already done so, you may want to hit this web site about trials. I found it to be helpful.

http://clinicaltrials.gov/ct2/info/understand

dash4

cptmac22 said:

When I was originally diagnosed with Stage IV cc with liver mets in July of '04, I signed up for a Stage II clinical trial. I have been NED since September of '04. I knew I wanted the possibility of better odds than what I had.

Not too many people sign up for clinical trials, but I've always been fascinated with the new. But this trial seemed really good for me.

I had read about the trial even before I saw my oncologist. He explained it even more so to me.

Let me know what questions you have or what info you'd like to know.

My trial was, having my colon resected on August 13, 2004 (Friday the 13th no less). I had to have my liver resected exactly four weeks later and have an HAI pump inserted.

I then had Irinotecan as systemic chemo and had HAI with FUDR to put chemo directly into my liver.

HAI has been an effective tool for those of us with Stage IV and that have used it. However, you must qualify for the trial, and different people qualify for different trials. So you'll need to work with an oncologist to find the right trial for you.

My trial has been so successful, it has moved to a Stage III trial. It takes a long time before it become standard treatment. That's why they always say we're about 10 years from finding a cure. Because it takes about 10 years of studies before drugs can become approved.

Because I've been so successful, I've talked to other doctors at other facilities about my treatment. I'm getting ready to speak to 20 - 500 people about my trial on the 25th of April. I was the second person at my facility to sign up for the trial and I've done extremely well.

So, let me know your concerns or what you'd like to know about trials. If you haven't already done so, you may want to hit this web site about trials. I found it to be helpful.

http://clinicaltrials.gov/ct2/info/understand

WOW! Thank you for your reply. I have never even heard about the treatment you had. Obviously, it sounds so successful.
I know I can talk to my husband's oncologist. I am not sure that they check out ALL the possible trials. I have tried looking on my own too and as "educated" as I thought I had become--still quite confusing as to what to look into. How did you ever decide on the one you did?
More than anything - thanks for the "hope" you have passed along.
You are in my thoughts and prayers.
Mary Kay

Hanac

Hi Mary Kay,

Go to http://clinicalresearch.nih.gov/

Love ya,

Hana

P.S. I did a clinical trial for stage 3...Folfox plus avastin every other week for six months then avastin alone every other week for six months. so far so good...Knock on wood.

dash4

Thank you all for your advice and support. It has been helpful and given me some new directions to explore.
Mary Kay

hopefulone

Hi Dash. Hubby did a "clinical trial with xeloda, avastin and oxal, due to the frequency of the medication it was considered a clinicl trial. Do be sure that your insurance covers a clinical trial, as we had to get preapproval. If your husband does elect to go on one, he can quit at any time or if doc deems necessary. Generally there is more monitoring , more frequent ct's (every 6 wks in hubby's case)and bloodwork is usually necessary every week or so and my husband had to keep a journal of side effects to report when he had his visits with the trial nurse. The nurse was awesome and explained everything in detail. You should also get "papers" on the trial which also detail all known side effects and which you are required to sign to participate. Be sure also to ask if by participating in the trial, does it rule out anything in the future. The trial was presented to us by the Cancer Center he goes to so we did not have to look for one but there is a website , I think it's National Cancer Institute that lists clinical trials seeking participants. Good luck and God Bless.
Diane

dash4

hopefulone said:

Hi Dash. Hubby did a "clinical trial with xeloda, avastin and oxal, due to the frequency of the medication it was considered a clinicl trial. Do be sure that your insurance covers a clinical trial, as we had to get preapproval. If your husband does elect to go on one, he can quit at any time or if doc deems necessary. Generally there is more monitoring , more frequent ct's (every 6 wks in hubby's case)and bloodwork is usually necessary every week or so and my husband had to keep a journal of side effects to report when he had his visits with the trial nurse. The nurse was awesome and explained everything in detail. You should also get "papers" on the trial which also detail all known side effects and which you are required to sign to participate. Be sure also to ask if by participating in the trial, does it rule out anything in the future. The trial was presented to us by the Cancer Center he goes to so we did not have to look for one but there is a website , I think it's National Cancer Institute that lists clinical trials seeking participants. Good luck and God Bless.
Diane

What good questions to ask....thank you for the info. It will be put to good use. Keeping you and yours in my prayers...
Mary Kay