Decision Advice?

I met with my chemo doctor yesterday, and our plan of attack for Chemo No. 3 will be the same as it was for Chemo No. 2, since that chemo went "normally" and involved normal pain.

I tried (again) to pin him down on the 6 treatments vs. 8 thing, and this is what he said:

-- If I'm not having major side effects, and my counts remain good, he'd prefer to go for 8 treatments.

-- He has not necessarily seen any difference in recurrence rate among people who have been through 8 treatments vs. 6.

-- He had previously said that 69% of his patients respond to chemo. Since my CA-125 is going down, I assume I am responding well. I thus asked, of those in a similar situation to mine, how many have a recurrence? And he said 50%. (Of course, I refuse to have a recurrence.)

-- He said he doesn't know how to prevent a recurrence, other than by doing the chemo that I'm already doing. He's an older guy, and I've appreciated learning from his base of patient experience and honesty.

Here is my question:

I went to the Wellness Community monthly gynecological cancers meeting for the first time this past Monday. Three of the other four women there had ovarian cancer, and all had been through chemo. A few mentioned that the neuropathy they experienced (and the ringing in the ears that a women who'd taken Cisplatin experienced) didn't surface until several months *after* the chemo.

Thus, if I'm able to make it through 6 chemo treatments in much the same manner as I made it through my second treatment (which remains to be seen, but which I am hoping for), and the decision is left up to me (and he said it's totally my call), should I:

-- opt for 8 treatments and just deal with any permanent side effects that might occur?
-- go ahead and just complete the 6 treatments?

In your eyes, does one vs. the other give me a greater likelihood of preventing recurrence? The doctor said he hadn't seen any difference, but he still likes to do 8 treatments if the patient can handle it.

When the choice is left up to me, I try to solicit as many opinons as I can. So . . . please let me know your thoughts. Thanks!

Siren:

Have you gotten a second opinion? I guess if I had that decision to make, that's what I'd do.

Everyone's different. I went into treatment with carbo/taxol with pre-existing problems of peripheral neuropathy in one leg and part of one foot. The Dr. knew this and went ahead. I did not have a problem with neuropathy from the taxol. After it was over, I had a flare up of it but that eased; just recently, after completing 8 carbo for recurrence, I had a flare-up again but it's fine now. I guess I'd say--it never hurts to get a second opinion. But don't look at the "what if's" and "down the road it could" as "it will for sure." As for me, the surprise has been the persistent GI problems since carbo which "shouldn't be" but are and others have said they can go on for years. I'd still do the 8 carbo over again.

s SirenSong

I actually wanted eight!!! But my gyn onc at Fox Chase said no way!!! They only reason he would have considered eight would have been for any residual cancer showing in the CAT scan done after treatment #6 or if I had been suboptimally debulked.
It's a tough call and depending on where you are treated the answer will vary. Dr Markman at the Cleveland Clinic is a great proponent of consolidation therapy. Continuing taxol up to a year on a monthly basis. My own doctor feels that is just giving up a year of potentially healthy time and taking health risks by walking around with prolonged bone marrow suppression.
When I attended the SGO conference in Louisiana, the gyn oncs spoke of looking for a safer way to consolidation therapy, but did not recommend extending treatment with taxol.
I have often felt that ovarian cancer moves you into a land where you make decisions based upon what you may regret the least in the future. If this makes sense to anyone.

karenann

I hate when doctors put the actual decision making onto us. What if I am wrong and they are right??? What if I am right and they are wrong??

I had 6 treatments of taxol and carboplatin and was told that that is the standard treatment. My oncologist never mentioned more. After my 6th treatment I had another abdominal cat scan and it was totally normal and cancer free. In fact my doctor told me that it was better than normal.

I have been cancer free for a year but that fear of a reoccurance is always in my mind. However, I was told by my oncologist and oncologist gyno that a reoccurance usually happens within a few months after ending chemo. Who knows???

I have my next appointment with both doctors the beginning of June. I have been very busy with school so I have had little time to panic but am sure that the time will come.

All I know is that I feel stronger and better now than I ever did. I eat right, go to the gym 4 times a week and am taking my mushroom complex supplements as told to me by the nutritionist I saw,at my oncologists request, from the hospital.

Good luck on your decision.

Rosalie

Ellen and Karenann,

Thanks for your replies. I can always count on you fellow 3Cers!

I did ask about consolidation therapy (without using that term, since I couldn't pull it out of my head at the time), and my doctor said that they really don't do that unless someone's participating in a trial. If there is a recurrence or some other problem, then they might consider it. But on first treatment, they do not go for the low-dose-for-a-year treatment.

My chemo doctor said that they will do a CT scan after my fourth treatment. Since I slightly reacted to the contrast media (iodine) last time, he said that they'll give me prednizone (spelling?) first, which should help. (I got two tiny little hives on my face, which went away pretty quickly . . . but the radiologist ran me over to Emergency right away, where they gave me . . . a Benadryl.)

The doctor said that he doubted very much that the scan would show anything, but said it would be good to do as a baseline, since I haven't had a scan since my surgery. I am already dreading the barium. So . . . I guess I'll just have to wait to see how I feel after the sixth chemo.

In the book "Coping with Chemotherapy," it said something about each chemo treatment killing approximately half of the cancer cells in your body. Thus, if you start with a trillion cells, each treatment takes out half of that number. The author was speaking in broad terms and was not talking about any specific cancer, so I don't know if this is always true. As much as I've read on chemo, I still feel I have a lot to learn about it.

My mom, who I think I've mentioned is a retired RN, has pretty much said that she thinks I'd be risking less by doing just the 6, and that she'd recommend against doing the 8. I haven't asked my dad yet.

ACK! I HATE DECISIONS LIKE THIS!

Quiltcrazy,

I will definitely ask the opinions of other doctors and Gail McKenna at the California Ovarian Cancer Coalition, since she's been helpful to me in the past. She will probably also call her doctor to ask his opinion. But I think the opinions shared by the women on this board are equally important. :-)

A friend of a friend just had her 8th of 9 planned Carbo/Taxol treatments. She also has leukemia, so her doctor just wants to blast the ovarian cancer as hard as he can. Maybe I can call her doctor as well.

Thanks for your responses. :-)

Rosalie,

We were typing at the same time, so sorry I didn't respond to your note in my previous post. :-)

Interesting that your doctor said that most recurrences happen within a specific timeframe. I hadn't asked about that, but I thought I'd heard that most occurred within two years. I'll ask more detailed questions when I go in for chemo on Monday.

I was taking maitake mushroom with D-fraction daily after surgery, but . . . chemo has put me off some of the things I was taking . . . mostly because I don't want to associate nausea with things I'll need in the future. I should, however, take some today, because I feel great.

Going to the gym probably makes a huge difference. I've been walking three miles a day with one or both of my parents, and there's a one-mile hill in the middle that just kills me. So that's something. Still, I wish I was lifting weights.

Thanks for your response. :-)

Dear Siren Song,

What a difficult decision! Obviously this is not territory that I have trodden, so probably I should shut up, but I thought of one angle that just might help, even if a little. The point of chemotherapy is to destroy as many cancer cells as possible, but if the number is halved each treatment, then mathematically, you will be left with some, at whatever point you finish chemotherapy. At some point, your own immune system has to take up where the chemotherapy left off and mop up those remaining cells. As I know you know, there is a tremendous amount you can do yourself to strengthen that immune system and get it working optimally. So maybe there is an argument for stopping after six treatments, providing the scans etc. show that the chemotherapy has worked well.

I'm sure you are right in canvassing as much opinion as possible, from both doctors and survivors. Trust your own gut instinct too. I pray you make the right choice.

Siren,

You might also try posting on the JHU ovarian cancer boards and see what advice you get there. I can't give you advice on extending your treatment, but I do know that treatments in this area continue to change from time to time.



Dorrie

Hello again Siren,

Actually going to the gym while taking the chemo, i felt, made me feel better. As you know day, 2, 3, and 4 after the chemo can be rough but after that i used to go.

Be very careful what you take during the chemo. I was NOT allowed to take any vitamins or supplement at all. I bloodwork was always fine and very normal.

After the chemo finished is when I went to see the nutritionist. Yes, she suggested CoQ10, and Caltrate D But the main thing that she suggested was a mushroom complex natural food supplement. It consists of Maitake, Reishi and ****ake mushrooms. I am taking them on a regular basis and will see what happens.

Good luck on your decision

Rosalie