Dr's telling me to give up chemo

awynn804 said:

NEVER GIVE UP.
You've
NEVER GIVE UP.

You've gotten some good advice from both sides. Sometimes your body needs a break to take advantage of the chemo regimen or just get another opinion from a different doctor.

I'm a strong believer that we all react different to these treatments so the doctors really don't know the answer and make their best guesses. Going to another doctor may give you a different best guess that someone may not have thought about yet.

Either way, my thoughts and prayers are with you.

Annette

evertheoptimist said:

Kathy,I won't second guess
Kathy,

I won't second guess your doctors: after all they have all the facts and they are trained professionals and I am not.

I will only say what I would do if I were in your shoes.

(1) I would insist that I get a CT or PET scan, whichever scan you used last time so that I can tell what is the situation NOW compared to what it was in Nov - whether disease progressed fast, slow, or to other places. Two months is a long time and a lot can happen. I don't understand your doctor's logic that you won't need a scan because you are symptomatic. Scans are NOT just there to confirm or deny the presence of the disease. They provide very valuable and critical information regarding if/how the disease is progressing.

If your tumor is still in one place and it's stable, I would seriously consider taking a bit of chemo break: they are not really working anyway for now, and they may work better if you take a break from them. Besides, it gives your body to recover from cumulative effects of all the poison.

If your tumors have grown/spread during last two months while the chemos were not working, it's an entirely difference state of affairs. It might prompt you to consider different options such as having a debulking surgery so that you can harvest your tumor samples and do cell assay testing and/and perhaps participate in tumor vaccine clinical trial (like the one in U Penn) that requires the patient's own tumor samples to create an individualized vaccine. If chemos are not working for you, this vaccine angle may be your option.

(2) I am seriously baffled by your doc's statement that a surgery is not recommended since it may just grow back. I have never heard of this. After my initial debulking surgery, they left a good lime sized tumor that couldn't be resected. Chemo melted it away completely. However, when I recurred, the first thing they checked is whether it recurred there (as in the same location). It did not. However, if it had, they would have recommended a surgery for me. It's clear that if one location becomes a repeat offender, they would like to surgically deal with it (with the surrounding areas: it was on the colon). This is in contrast to your doc's statement.

(3) If a single location is all that is wrecking havoc with you, you could also consider radiation as an option.

Again, I am not a doctor and I don't have all the facts. However, one thing I learned throughout all this is that there is way more the "art" component than science when it comes to recurrent, advanced stage ovarian cancer, and no single doctor's call is a final call. By talking to women who are all going through this, I realized that the best doctors with world renown in the top cancer centers are responding differently to very similar conditions of us, the patients. If the whole thing is a very well established science, we won't see this level of variance, even if we consider individual differences (patients', that is).

And, even the best doctors can be wrong. They have their OWN blind spots. I question and verify EVERY recommendation my doctor makes: I respect him, and trust him, AND we have a great rapport: as a professional to professional. But I verify EVERYTHING. I spend decades working in a very competitive environment with some major braniacs, and the people I worked with are no less intellectually endowed than any of the world's very best doctors. And even in an industry like that, we all make mistakes. I certainly have. So, why wouldn't the doctors, even the best ones?

Here is something I post a while back. I proved my very very good doctor wrong (sort of).


http://csn.cancer.org/node/231754

evertheoptimist said:

kathy
I would very much
kathy

I would very much appreciate it if you share with us how things are going. We all learn when we are sharing our experience and the recommendations and inputs from our own doctors.

One of the major benefits of discussion like this is that indirectly we are getting second, third, and fourth opinions. Given how much uncertainty and diversity there is, every bit of data helps.

good luck!