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clinical trials..

Jnet's picture
Jnet
Posts: 14
Joined: Aug 2006

Hello Everyone. Happy Valentine's day! I have questions. Here's the story. I was dx'd last January 2006 w/ colon Ca. I had surgery same month and had 28 days radiation and 6 weeks chemo. stage 3. 5 Fu and Leucovorin. Now in January 2007 CT Scan shows multiple spots in liver the biggest one is 5 cm and bone mets in my Spine ( Vertebrae) T12 and L2. So now I am stage 4. My Doctor said He wants to do aggresive treatment this time ,and ask me to participate in Clinical Trial. I don't know what drugs yet, They will let me know on tuesday. So my question is, Should I go with the clinical trials ? Please give me some advice. And why do they tell people to go on clinical trials? I hope you guys can give me some advice. Thank you so much. I know I don't post much here but I am here everyday reading the posts. Thank you all so much. It's so comforting to come here everyday and read the posts with all the NED people and the supports here, even with the people that is still battling the disease. I hope and pray that they can cure and prevent this disease so no one else can be affected by these disease anymore. Thank you and God Bless. Any Info please.

Jeannette

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

in my opinion trials are not necessarily your friend..depending upon the phase-(1,2,3,4..) they are primarily looking for guinea pigs to determine maximum tolerable dose.
I suppose that without trials, there would be no progress, but there hasn't been much progress..once we are stage IV, we essentially have "nothing to lose" so your Dr can suggest a trial because it could be more promising than anything else in his/her arsenal. pessimistic? yes, but you will receive other opinions, mine likely being the most negative, thereby giving you a framework in which to make your decision.
I think your doctor needs to tell you what other options you have, and what exactly the trial is trying to prove, and what stages mean. bud

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Hi Jeannette: I am so sorry to hear that the cancer has spread, but it is a good sign that the onc says he wants to be aggressive. As for the clinical trials, find out what drugs are involved and the purpose of the trial. For example, I was on a pharmacological (sp?) study that used drugs already known to work (Oxaliplatin, Xeloda and Avastin) but they wanted to know how long it stayed in the blood. I just had to do a lot of blood work. I would not, however, unless I was at a point where I had no choice left, try a new drug out. Once you find out about the drugs and purpose of the study, why don't you let us know and maybe we can help you with what we know so that you can make an informed decision. Meanwhile, research, research, research and ask the onc as many questions as you need to feel that this is the best treatment for you. I hope this helps. Monica

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hi Jeanette -

I am sorry that you have joined the Stage IV club.

You need to find out more about the proposed trial - you may also want a second opinion (a no lose situation as far as I am concerned), but regardless your doctor needs to tell you more about this trial. And you need to ask why the doc's only suggestion is this trial.

But, that aside, there are ALL kinds of trials. Many use existing drugs and procedures in just slightly different ways. (I was evaluated for one of those but didn't qualify.) The trial may be just "Phase 1", but in and of itself that doesn't mean you will be used as a human guinea pig if you participate - some trials have very subtle nuances when compared to standard treatments. Others are totally new. Not necessarily the wrong thing to do, but you need information to even begin assessing the option.

Bottom line - you need to get all the details you can about options, including trials. And, if you feel your doctor is not really giving you that info, then it probably is time for a second opinion.

I wish you the best.
Betsy

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Hi Jeanette,

I am so sorry to hear about your "recurrance". I would listen to you oncologist but would also seek out a second opinion with an ocologist at a major cancer center. Google Comprehensive Cancer Centers if you are not already being treated by one. I have to ask when was your last CT scan?

The best thing that can happen with a second opinion is the new docs completely agree with your current docs. The worst thing is you get some other options which in my opionion is great.

I wish you the best of luck and please keep us posted.

Lisa P.

lfondots63's picture
lfondots63
Posts: 822
Joined: Jan 2006

Hi Jeannette,

I would agree with the others. Find out from your onc what the trial entails and what drugs. Also why that was the only option that was given? You would think that there is always more then one option. If the onc doesn't give you more then one, get another opinion. It is your right to feel comfortable with the choices and not backed into a corner. Keeping you in my thoughts and tell us what you find out. HUGS.

Lisa F.

MCarr's picture
MCarr
Posts: 20
Joined: Feb 2007

I agree with the others so far. Ask, ask, ask, as many questions as you can. My opinion will probally come off more optimistic than the others. My life was saved because I entered a clinical trial. 2nd opinions and even 3rd opinions are always a good idea. Twice I have heard the words 'nothing we can do'. The first time a second opinion at a major cancer treatment center gave me a chance, which worked. The second time I entered a clinical trial and was one of the lucky ones. However my clinical was not involving drugs, it was a procedural clinical to reduce pain that had an outside chance at extending my life. That was in 2002 and I was given 12 months.
So my opinion is don't just enter a clinical to try something, but if you find one that fits your situation then investigate it thoroughly.
Good Luck, my thoughts and prayers will be with you.
Mike

taraHK
Posts: 1961
Joined: Aug 2003

As Bud (Nanuk) says, it can be useful to get a variety of opinions from this board. I have not participated in a clinical trial myself, but I have a more positive view of them. First of all, although you may be receiving a new drug or treatment, my understanding is that most clinical trials have to go through pretty rigorous approval beforehand so it is likely that whatever new tx is given will already have some decent evidence to support. Second, when you are a participant in a clinical trial, you are monitored very carefully and usually get a lot of attention and follow-up. (And it's usually free??). I once turned down the opportunity to participate in a clinical trial. With 50-50 hindsight, I wish I'd said yes. The treatment option being offered to me at that time ended up becoming "standard practice" for my stage about 1 yr later. All this being said, I certainly agree with others that you should get information, ask questions, and consider 2nd and 3rd opinions. Wishing you all the best.
Tara

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

one thing you must understand is that regardless of what they are testing, drug or other experimental treatment procedure, there is a document-(cannot recall the name)which states the ingredients, procedures, etc. This document is secret-(because of competition) and will not be shared with anyone-not even your doctor. They will provide you with a less detailed summary which reveals very little.
Being stage IV, I would participate in a trial, but probably not before other treatment options were exausted. I would seek a 2nd opinion from a major cancer center that is involved in both conventional and alternative trials, such as M.D. Anderson.

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Hi Jeanette,

If you go to the website of the National Cancer Institute (www.cancer.gov) you can get alot of information about clinical trials, what they are, and what ones are being done, as well as steps to take in looking at participating in a clinical trial. In addition, there is alot of information about different cancer types and the treatment for them. I would also recommend getting another opinion as it seems there are second-line treatments that could be used with effectiveness.

Dick

Jnet's picture
Jnet
Posts: 14
Joined: Aug 2006

Lisa,
My Last CT scan was January 3, 2007. I had Bone Scan Jan 12. Ultrasound Feb 13, MRI Feb 14,2007. Colonoscopy Dec. 29, 2006.Colonoscopy looks good. Thank you all for the response. I am so worried.

Jeannette

katefm's picture
katefm
Posts: 112
Joined: Oct 2006

Hi Jeanette-

My husband is Stage IV, in a clinical trial that is currently evaluating whether Erbitux is more effective on it's own or combined with Avastin. Since they are both FDA approved drugs, he's not really a guinea pig. Avastin is approved as first-line treatment, so it's sort of the standard. (He ended up on the Avastin arm of the trial, so it turns out he's not getting Erbitux at all!)

All that being said, the reason we agreed to the trial is for future colon cancer patients, but more selfishly, to hopefully benefit our kids at some point. Jim's in a Phase III trial.

You have to decide if the trial is right for you. (As everyone else said.) Find out every single detail. Make sure you'll be getting at least the standard of care. Get a second opinion. Find out what Phase the trial is in and why they recommend it. And find out whether your doctor's office receives any money for the trial. Ours didn't, and truthfully I felt a little funny asking, but hey, it's your life.

Best of luck to you. There are many people who participate in trials and they are providing serious medical benefits to others. Whether or not you decide to do the trial you absolutely have to do what you are most comfortable with.

Kate

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