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Need Help With Important Treatment Decision -- Standard Chemo or Randomized Trial? Need Help With Important Treatment Decision -- Standard Chemo or Randomized Trial?

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  #1  
Unread 03-18-2003, 10:57 PM
Need Help With Important Treatment Decision -- Standard Chemo or Randomized Trial?

I need your help with a serious decision. And I'm looking for as many opinions as possible.

Earlier today, when I got my staples out, my lead doctor handed me a document entitled "A Phase III Randomized Trial of Paclitaxel and Carboplatin VERSUS Triplet or Sequential Doublet Combinations in Patients with Epithelial Ovarian or Primary Periotoneal Carcinoma."

The goal of the study is to see if the existing treatment can be improved. It's an international study that will ultimately include 4,000 people. I would get the standard Carboplatin and Taxol treatment PLUS something else. The study has been going on for about two years so far.

I have the option to accept the existing 18-week, 6-cycle Carbo/Taxol protocol or go with any of the following (the choice, however, would not be mine, as it's randomized):

-- Carboplatin, Paclitaxel and Gemcitabine
-- Carbonplatin, Paclitaxel and Doxil
-- Carboplatin and Topotecan, followed by Carboplatin and Paclitaxel
-- Carboplatin and Gemcitabine, followed by Carboplatin and Paclitaxel

I am 37 and am told that I am young for such advanced cancer. Thus, they think I am very suited for this study. However, there is the risk for additional side effects (particularly from the Doxil, which I would personally not necessarily want to take). The treatment could makes things better, or could make things worse.

At minimum, I would still get the Carboplatin and Taxol. I would just get something else as well. And those additional ingredients are unproven in treating this particular form of cancer (though they are proven in treating other forms).

I personally don't know any of the statistics on Carbo/Taxol with Stage 3C ovarian cancer, or how effective it is. I just haven't asked. Does it work? Or does it often fail? I honestly don't know.

My doctor said he would put his daughter in this study if she had Stage 3C ovarian cancer. My father, a retired physician from another medical specialty, says he would not do it, since it will take another 35 years to find another drug that works as well as the ones we have now (which also took that long to develop), and they shouldn't be experimenting on me.

I need to make a decision on this soon. I realize the decision is mine alone to make, but I am the kind of person who likes to ask for a lot of opinions before I make a final decision. I will speak to a number of physicians. But you guys are my best focus group.

One additional downside: Participation in the study would mean one more month of chemo, and it's 8 cycles instead of 6.

What would you do? All opinions are valued and welcome.

Thank you! :-)
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  #2  
Unread 03-19-2003, 07:46 AM
Need Help With Important Treatment Decision -- Standard Chemo or Randomized Trial?

s SirenSong

One of the reasons why ovarian cancer drugs are so slow to develope, is that too few women make use of the clinical trials that are out there. The same fact does not hold true for children. IE: childhood leukemia. At Children's Hospital in Phila over 90% of kids diagnosed with leukemia participate in clinical trials. My nephew being one.
JMHO But I would do a phase III trial in a heartbeat. By the time a drug reaches phase III, you are far from the danger zone.
I was 49 when I was diagnosed with stage IIIC. Unfortunately I had a thrombocytosis (very high platelet count) at the time of diagnosis. This kept an otherwise healthy me from participating in a trial. I will always have regrets about this.
I have become quite involved in ovarian cancer advocacy since I was diagnosed and have attended numerous conferences. The lack of participation in trials is quite a problem.
The standard, taxol and carboplatin, is part of all the plans you have mentioned.
My prayers are with you as make this decision.

karenann
  #3  
Unread 03-19-2003, 08:56 AM
Need Help With Important Treatment Decision -- Standard Chemo or Randomized Trial?

--I would be tempted to go for the clinical trial. I would though ask questions about how much carboplatin and taxol you get relative to standard. I believe most of the other drugs you mentioned are used for recurrent ovarian cancer. I'm sure one of the goals of the trial is to see if more aggressive therapy works better.

Good luck!

Dorrie
  #4  
Unread 03-19-2003, 10:23 AM
Need Help With Important Treatment Decision -- Standard Chemo or Randomized Trial?

Hi there,

Normally I'd say give the clinical trial a chance. As Karen mentioned, a Phase III trial is pretty advanced; at this point, the doctors should have lots of info on safety, potential side effects, etc. Ask about that information; talk to some of the staff that are working on the trial, ask for a consent form to review. It should outline the study in much more detail than the pamphlet.

My concern is that you stated that you would not want to take Doxil, and there is a 25% chance that you will have to take it. So I'm worried that you will end up on a treatment that makes you uncomfortable, which would not be good! Just my 2 cents. Good luck with your decision, it is soo difficult.

Beth
  #5  
Unread 03-19-2003, 10:28 AM
I don't have ovarian cancer but I do know...

...a little about one of the other drugs being tested: Gemcitabine.

My boss was given this drug for treatment of pancreatic cancer, another tough nut to crack. It proved very effective in beating the cancer into submission and he had very few side effects from it.

Now, as to clinical trials. I believe you are doing the right thing to find out all you can before agreeing to participate. As you've probably discovered, there are as many responses to your question of should I or shouldn't I as there are people you have asked. You may want to look at the National Cancer Institute's web site regarding what kinds of things to ask researchers wanting you to participate. As Tom and I researched treatment options for his pancreatic cancer, we found it to be very informative. The yes or no is ultimately your choice but I might suggest you consider the altruistic path of participation.

Either way you choose, be assured you are making the right decision for YOU at the time, based on the information you have. It's your body and your life, the folks who care about you should rightly support you whichever way you go. I will.

Please keep us informed.
Lynn
  #6  
Unread 03-19-2003, 12:34 PM
Tough decision to make.

I would not let the total of 8 chemos vs. 6 with standard stop you. Those two will go quickly. I'd definitely ask more questions about potential side effects of the topotecan, gemcitabine, and Doxil and then make a decision. Also ask what would happen should you have some severe side effects. This is a big decision--I won't try to make it for you. Think it over, ask questions, and make your decision based on what you feel is right once you've looked everything over. Ellen
  #7  
Unread 03-19-2003, 04:54 PM
Need Help With Important Treatment Decision -- Standard Chemo or Randomized Trial?

I can't add much to the geat advice you have been given already, but will say a prayer that God guides you in this decison
  #8  
Unread 03-19-2003, 05:06 PM
Need Help With Important Treatment Decision -- Standard Chemo or Randomized Trial?

I second Karenann. Phase 111 Clinical Trials are relatively safe and allow you to be a service to future cancer patients. Research Phase trials, ask questions, and decide. Know that what you choose was right for you.
  #9  
Unread 03-19-2003, 05:52 PM
Need Help With Important Treatment Decision -- Standard Chemo or Randomized Trial?

Much love and many s to those of you who responded. Your opinions are all of great value to me and my mom.

Note to Lynn: I am THRILLED to learn that Gemcitabine is proving effective in treating pancreatic cancer. That's been untreatable for such a long time!

Note to Dorrie: Thanks for letting me know that these drugs are often used to treat recurrent ovarian cancer. Since I haven't met with the chemo doctor yet, I didn't know that.

I do have the detailed consent form, and it lists out all the side effects for all the drugs. I have no problem with any of the drugs besides Doxil (a form of doxorubicin that is packaged in fat cells to help reduce side effects).

Doxil side effects include the normal ones associated with the other drugs, as well as the possibility of heart damage, an increased risk of developing acute myeloid leukemia (AML), skin rashes on the palms and soles of my feet and along skin folds, blistering and ulceration (rare) and severe damage to the skin from IV leaks.

After reading through all the other drug side effects, however, I see that the AML risk is also associated with Carboplatin, and most of the drugs offer a chance for decreased liver function and/or kidney damage. So maybe all the side effects for all the drugs just suck no matter what.

I spoke with the research nurse for 30 minutes earlier today, and she said there's no way to "opt out" of the Doxil option. I get what I get, and that's that. I would go for any of the other three options in a heartbeat. It's the fear of getting the Doxil option that scares me.

I'm a risk taker, and I do like to help others. The duration isn't as big of an issue as the toxicity of the drug I might get.

I guess I just don't know enough about how well the existing Carboplatin/Taxol protocol works. I meet with the chemo doctor next Wednesday. Maybe I need to start asking those "survival rate" and "likelihood of recurrence" questions . . . which I've been avoiding.

Is it so wrong to want to keep all my other organs in strong working order? I expect to be around (and healthy!) for a very long time after completing chemo. And I want everything to work the way it did before.

Grumble. Why do we have to make ourselves so sick to get better?

Thanks again! :-)
  #10  
Unread 03-19-2003, 06:32 PM
Need Help With Important Treatment Decision -- Standard Chemo or Randomized Trial?

Hi,

The 5 year disease free survival rate for advanced ovarian cancer is, sadly, quite poor. Phase I and Phase II clinical trials are usually only open to people who have exhausted all standard clinical treatments. For a drug to reach Phase III trials, it has to have shown promise in the earlier studies, and the tolerabilty and side effects are generally well known.

I can understand your father's reluctance to have you serve as a guinea pig, but these days clinical protocols undergo extensive institutional and peer review and no deviations from the approved protocols are allowed. Read the consent form very carefully and pay particular attention to any listed adverse effects. If you do decide to participate in the clinical trial, and the side effects are more than you can stand, you can drop out of the study and resume conventional therapy. One other question to ask is whether the trial is open label or if it is blinded. If it is blinded, then even the doctors won't know what treatment you are receiving until the code is revealed. So if you are randomized into the treatment regimen that you don't want, this lack of knowledge may make the anticipation of unwanted side effects easier to contend with.

Karenann is right, the reason it takes so long to come up with alternative therapies is, in part, due to a lack of volunteers. My own cancer (endometrial) did not require chemotherapy. However, if I do have a recurrence, my only hope of long-term survival may be participation in a clinical trial. Personally, although I might be hesitant to participate in a Phase I study, I would definitely opt into a Phase III study. My feeling is that even if the experimental treatment did not work for me, if the doctors learned something from my participation, then my death would not have been in vain.

I wish you the best of luck in whatever treatment you choose.

Jan
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