Treatment Options after chemo

Now that I've  had that nasty surgery and done 5 rounds of chemo (taxol/carboplatin), I opted not to do the last round. The side effects were beyond what I could endure and spent a week in the hospital for damage control. So here I sit with a CA125 at 43 and am told that there is nothing more they can do at this time - the doc went so far to say they knew after chemo #3 that I was not going to be cured but simply to extend my life a little longer. I was told that I should expect to live another 18 months. Has anyone found themselves in this situation - are there no single agent drugs being used or anyone in a clinical trial? I just can't believe that I'm really going to die after all this and overwhelmed by it all.

[Helmar]

Hello... it's a pity that you couldn't finish the 6th. round, as that could have got your numbers down under the magical 35. I was lucky to get mine down to 12, but ever since, 50 is the best I can do. Mine is generally in the 100s, but I feel well. Do you feel well, and do you eat well? I was dx Stage 4 in Feb'04 and I'm still here, mainly due to being pretty much on non-stop chemo, and a very strong will to survive. I've always said, even when my CA.125 was 7500, that I will fight this lousy disease to the bitter end, and I will. I don't care what Doctors say... they don't know it all... and we are all individuals, so the medical profession can't generalise really. Yes, they can go by stats, but I like to think that I make my own stats. :-)  Don't give up...there are lots of other chemos 'out there' (Doxil is a good one)...and like me, just keep plodding along, trying out various drugs, and surely there will be one that will do the job for you. If your Doctor told you that you could only expect to live another 18 months, maybe you should have asked if you could have a lend of the crystal ball. :-)  Take your Doctor's comment with a grain of salt, and show him that he is wrong. Keep fighting, and stay strong mentally to beat this beast.
Wishing you all the best....hugs...Helen..

[kismetfarm]

Goodness they are a bit quick to write you off!

I'm still here 7 years after diagnosis and lots of chemos later - I still hold down a full time job, do most of the things I want to do when I want to do them... Taxol and carboplatin didn't work for me either - neither did other treatments until one that did (for me it was Etoposide which also doesn't give me too many side effects which is nice). There are lots of other options - none of which are as effective as the Taxol and carbo but they do work for a percentage of people.

It is probably time you did some research on the net and got a list of possible chemos (and combinations) that are used for second line treatment. Take those back to your oncologist and ask why you can't try some of those when the scans and CA125 start indicating you need some help keeping this at bay again.

[medresc]

here is a mixed response:

1) oncologists 'like' for you to be in remission by the 'third' cycle of your first chemo type.  This is because it, statistically, shows a good response.

2) get another oncologist if they are this close minded...statistics are not people and they should know that and their 'explanation' is too harsh.  yes, the goal is to extend your life through chemo or other options.  chemo is toxic though, so you want to get the *right* chemos and as few of them as possible (you do not want to be on it constantly and never have a break due to toxicity).

3) oncologists like single agents because it's cheaper for your coinsurance and gets you out of their infusion center so they can bring in other patients.  double agents provide, in many cases, greater responses.  triple agents are upcomming too.  review this forum to find several that have been mentioned.

4) they are quoting you statistics.  have them explain why you only have so long to live...they don't know....maybe they are basing it on how quickly a particular tumor grew in a timeframe or counts, it's hard to tell and they should be more forthcoming with you

5) clinical trials are good...but not always needed.  oncologists can give you researched double agent chemos that have been studied...this is using approved chemos that have been FDA approved (although some are used 'off label' since they are not for use with ovarian cancer yet...this is not uncommon for oncologists to do).  phase II clinicial trials will always give you the actual agent...it's goal is to see if it 'works' (so you can get toxicity with no results) and phase III will give you either the agent and the placebo or the agent and the trial drug.  other times they give you the current best treatment (such as Doxil) and the other arm gets the trial drug to measure which one is better....that is common (this way you get a fighting chance)

don't dispair...I do not like when oncologists present situations this way because there is always hope and there are some novel treatments and combinations here and upcomming in a year or two!  keep fighting and consider another oncologist if you feel that is appropriate

[Conquerer]

get another opinion.  Heck your doctor is suppose to fight for you.  There are a ton of clincial trials and as posted befroe about twenty differnet drugs to try.  my friend did not respond well to taxol and carboplaten but is to doxil.  have someone test your tumors for the appropriate drugs.  I just hope the lack of insurance or poor insurance is keeping you from better treatment.

good luck

[Annekathryn Goodman, M.D.]

Hi There,

I just love all the wonderful, beautiful responses you have gotten. I agree with all of them.

It is worrisome that your CA 125 did not drop to normal by cycle 3. A normal CA 125 by cycle 3 or 4 is predictive of going into remission. However as several people have said, people can live with their cancer on chemo for a long time.

Statistics have some important benefit for policy and research development. It is also important for an individual to know that they are up against an uncertain situation. It is important for you to be sure that you have told everyone you love that you love them. Do not delay doing things and being with people you want to be with. If there are big legal and financial life issues that you and your family need to address - deal with them.

However, beyond those practical issues, then it is important to find a healthcare team that is going to fight with you. There are many drugs that have effect in ovarian cancer (see my other post today on gemzar).

A few other thoughts:

-- You made the right decision to stop after 5 cycles. If you were having tough side effects and your CA 125 was not dropping, it is unlikely that another cycle would do more than give side effects.
-even though carbo and taxol did get you into remission now, these drugs can be tried again in the future as single agents

-I agree that doxil would be a very good choice for your to consider right now. It is once a month. The side effects are low, it is a slow worker and best used when a person does not have big tumors.

-I am not sure I completely agree with medresc that 2 or 3 drugs together are better than one. That has been a big point of controversy. Multiple drugs definately cause more side effects and if you have had a hard time from carbo/taxol, I worry that you would have trouble with another combination.

best wishes

[medresc]

I agree what you say is true due to her side effects from first line.  However there has been studies recently reported showing excellent responses with two drugs with high response rates using established drugs and some off label usage of drugs meant for other cancers.  such response rates go higher than the typical 20 or 30% response with single agents.  of course those are just studies and everything needs to be taken in with the patient.  I agree with the others, thank you for coming to this forum as your advice is greatly appreciated here!