what my doctor said re: having one less chemo than recommended protocal

Songflower said:

Your Chemo Decision
I think you should go by some research studies. I had the total of 6, 8 doxils, topotecan didn't work and am not on gemzar single (weekly) as I am pretty worn out and this way I can get more of the drug. I often wonder when our CA 125 is normal why we still relapse. My Gyn Onc said it is because the cells go dormant. It's a tough call. Let us know what you decide. Diane

I've looked at chemo differently since I recurred.
In the beginning when a 'cure' is still a possibility, "balls to the wall" is the way to go, aggressive and throw the kitchen sink at it because you may just be able to walk away from this adventure and never look back.

But once you recur, QUALITY OF LIFE needs to get more weight in your decisions. For most of us, any remissions are apt to be short and chemo is apt to be a big part of our lives from now on. I, of course, hope that isn't true for any of you battling a recurrence. But you need to factor that into your decisions and discussions with your oncology team. Can you find a balance between quality of life and prolonged survival? In what way can you live a vibrant happy life even while in treatment? If the treatments are robbing you of joy, and it looks like 'treatment' could be a big part of the rest of your life, at what dosage and schedule can you recapture a more meaningful quality of life?

Maybe pushing on with chemo will buy you a longer remission. & maybe not. I haven't enjoyed a remission for over a year, and yet I well remember how WONDERFUL (WONDERFUL!!!) it is and if I thought there was a prayer of my ever going into remission again, I can't imagine what I'd let them do to me. But I don't believe remission is in the cards for me anymore, nor do my doctors. So evey decision is based on balancing maintaining a high quality of life with doing what I need to do to stay alive. I've taken so much chemo that simply didn't work and that allowed disease progression even as I was in treatment. If I suffered like some of you do when I was getting chemo, I know that I wouldn't take one more chemo infusion than I needed to. This is coming from my own unique perspective and history, but I wanted to throw it out there as you work through your decision. (((((Maggie))))

Chemo
I am doing well on gemzar weekly. I hope it works because I feel like I could tolerate it long term. The topotecan really wore me out and didn't work. LIke Linda, I would have stopped it had I known it wasn't workinging. It's hard to tell. I get flu symptoms for about two days with gemzar and a headache. The rest of the time life is pretty normal. Jim went to a work picnic today and it was wonderful to tell him to go because I am tolerate this gemzar. I too think I will be on chemo the rest of my life and am happy to find a chemo compatible with me although I don't know whether it works. I don't regret hipec as it gave me more time.

I too have a hard time with chemo. I was always healthy except for breast cancer treated with chemo and did great with that. I exercised regularly and ate healthy. I wish a normal CA125 protected but I know only too well it does not. Something is going on when it is normal and we relapse. My GynOnc says the cells go dormant. I don't know how you find them then. Right now whenever I am off chemo I relapse. I know I won't take taxol again.

After my breast cancer chemo I suspected the second adriamycin killed the cancer. It felt like a syringe was in the tumor sucking it out. (I had chemo upfront). It became very hard after that. Honestly, I think I only needed 3.

I doubt #6 will help you that much. But if you will be upset with yourself for not taking it and relapsing then take it. I don't think your oncologist would tell you that you don't need it if you don't. This is all they study and learn. We try and study and learn on the internet which really is limited information. If you relapse and take 5 don't blame yourself. My personal idea is that after our first chemo (carbol/taxol) we need something low dose for a year to catch the dormant cells.

I don't know if I helped but you have to be content with your decision. Either way, I think you will do the right thing. Sometimes we don't know; like me taking topotecan.
Also I could have taken a cisplatin drug with gemzar but he decided on one drug therapy as you can give higher doses and it easier on you because it is only weekly. I guess I will be on a platinum drug alone next. I don't think about it though.

These decisions are so hard to make. What are your thoughts now?

Diane

maggie_wilson said:

diane
i appreciate your comments and experience very much, and am sorry not to have remembered that you also had breast cancer. isn't hipec what connie (paris) on this site had in december 2010? i wonder how she's doing...i'm not sure i'm clear what you mean when you say that hipec gave you time???

i just learned that my ca 125 after 4 cycles is now at 32, below the supposedly "normal" 35. i'm pretty sure it will go down a little more after my 5th chemo, then i think i'm going to stop there, and not do the 6th. with upsc later stages, there are almost always reccurences so i'm not going to blame myself for that, i expect that. the only question is how long a remission will i have?

i've been thinking about dormant cells, migrating cells, pocket cells, all terms for the same thing, and frankly i believe they are always there with upsc, even when we're ned. sooner or later they crop back up. i want my immune system to be in the best condition it can be, which means the fewer the chemos the better. as i've said in other posts, i'm going to explore the possibility of high dose iv vitamin c; i've heard great things about it, and there have been women on the ovarian site who've had it with good results. i'm going to go to that site and check in re: this again. there are just not many alternative treatments for upsc, as opposed to ovarian, for example, like evertheoptomist is doing right now. a trial for a vaccine consisting of 5 overexpressed antigens for her cancer. i think because there has been some confusion about what cancer she in fact has, ovarian or upsc, she's being treated for ovarian. (i hope i've gotten this right)

when i had the tumor assay to determine the best chemo for me this time around, it came out that cisplatin and gemzar was the most synergistic, and it was the first one recommended. my doctor thought the cisplatin would be too harsh for me to tolerate, and i know she was right, so she has me on a "cousin" of cisplatin--carboplatin, which seems to be working. she also reduced the strength of the carbo by 16%, and the gemzar by 20%., which i'm really glad she did, because it's hard enough as it is.

so, diane, my thinking now is no 6th chemo, and i'm feeling pretty good about that that's the right decision. so glad you're feeling better.

sisterhood,
maggie

Your Decision
I think you are right in your decision. I was too worn down to take carboplatinum with gemzar this go around. We have to all make these hard decisions. I have to realize how run down I am and how much better I am feeling now. I think #5 will be good too. They don't really know how much to give us. Clinical research studies guide them. I am with you in this. You have done your homework. I've made some decisions that were not the best along this rocky road like the topetocan. But I am doing well on this gemzar. "Live, Learn, and Pass it On." Can't wait for you to start feeling better!

You're a Warrior!
Diane

Songflower said:

Chemo
I've heard that too. They can knock it back as long as it doesn't go to high and then our bodies don't get too much chemo. I think we panic when it starts going up and almost pressure the Doc's to start chemo. It's natural to feel panicked when this happens. But I've also heard it doesn't extend your life just your time on chemo. With time we'll figure it out. I believe you made a good decision. Diane

Good discussion
This would be a tough call for me. I think you have been thoughtful about it.

I do remember someone - I think it was Shortmarge - who did not have the standard 6 taxol/carbo initial chemos because she had trouble. She stopped at 5 And I believe she is still NED.

Re: the "balls to the wall" philosophy. I really wonder if that doesn't come back to bite us. How much of our immune system is compromised with more treatments? What kind of long term side effects are we unwittingly setting ourselves up for? In Diane's case and others treated with chemo for prior cancer, I think it was mentioned that there might be a link to UPSC. Only time will tell since there is still so much research that needs to be done adn this is such a crap shoot. I'm comfortable with my doctor's conservative approach - only treating what he sees a need to treat rather than throwing the kitchen sink in there. And, as Maggie is dealing with, the ultimate decision is ours.

Continuing Blessings always, ladies. Mary Ann

maggie_wilson said:

mary ann
i agree, too, with my doctor's more conservative, thoughtful approach. i don't think i'd stop at 5 if she didn't think it was fine to do. as i said earlier, she has said that really it's the first 4 chemos that are most effective. i think she was speaking generally, and not specifically to mine. i'm sure my ca 125 will go down a little more with the 5th chemo, and i don't see much value in a 6th. i want my immune system to be as strong as possible, and i'm glad my doctor has not thrown everything and the kitchen sink at me, as my surgeon would have done. he was saying i should have chemo a good six months before my chemo doctor thought i needed to. nothing had changed since i had seen him last 3 months earlier.

now the issue is platelets--never had this problem before, but now they're low. i had labs done tuesday, and if they're still as low as they were, i might have to have a transfusion. it's always something. i so want to be able to have my last chemo cycle the next two mondays. my acupuncturist said having chemo on 8/8 is very auspicious according to the chinese--something like double infinity. sounds good to me. waiting to hear re: results, if we don't hear by late afternoon, we'll call, but right now, no news is good news.

how long has it been now, since you're last treatment? sounds like you're doing well, which is great. as soon as this chemo is over, i'm going to pursue high dose iv vitamin c, which i've mentioned in earlier posts. i've posted on our ovarian sisters' site asking about vit c, and 3 women said the same thing: they all feel it's helped them immensely. two had iv vit c during chemo, and they attribute much of how well they felt during chemo, to vit c. and they're still taking it as a preventative. so can't hurt to check it out, since so few options for us.

take care, mary ann. trust everything is good.

sisterhood,
maggie

Maggie
I am doing well, thanks. I finished tx in Nov and have had great exams since then. I think leaving my FT job was the frosting on the cake for my stressless lifestyle.

I will check out the Vit C. It is antioxidant so really makes sense. Aren't pills adequate?

Now back to your blood counts. Don't think I'm crazy...but when my blood counts tanked during my initial tx, I dodged the neupogen shot (at least I attribute it to this) by using my visualization techniques!!! Good ole Dr. Simonton to the rescue!! I visualized my bone marrow "factory" turning out lots of blood cells. My cat who is the world's best and 2nd loudest purr-kitty loves to perch on my stomach. Her purring was the "motor" that ran the factory. Viola...Within a week my counts were great!! Give it a try - sure can't hurt anything.

Maggie, all my best to you, friend. Mary Ann

lindaprocopio said:

Maggie: on those low platelets, be careful.
You probably know this, but low platelets puts you at risk for internal bleeding so don't do any heavy lifting or anything strenuous until you get them back up there. Don't strain on the toilet; pinch back any huge sneezes; don't scratch your skin hard even if you itch; floss only with extreme care; stuff like that. I had to have a platelet transfusion once (looks like a bag of snot); & that did the trick & brought me back up to safety.

I have been having some issues lately that I will share with my buddies posting on this thread. I'd been so lucky to have no real side affects from my cancer or my treatments, but last month I noticed that my voice was soft and when I tried to speak up it would get all squeaky (& that is how it's been about half of the time). I also minded the heat wave so much worse than I ever have, feeling so winded from any exertion. It really was noticeable at the beach when I tried to walk 2 miles to various shops in the heat and found myself really sucking for air & scaring my family. & when I tried to jump the waves with my granddaughter, in no time I couldn't get my breath & was knocked into the surf. Combined with all that, right between the 'v' of the center of my ribcage, it hurt when I pressed there, and I was burping and uncomfortable. My oncologist suggested I see my primary care physician, so I did that today. He said my liver is slightly enlarged and pressing on my lungs and my stomach, causing those symptoms. To rule out blood clots, he had a Lower Extremity Doppler and a CT-A (a special CT scan that looks at arteries, etc. with a fast-push contrast) & both were clear. But he is still calling my oncologist to recommend that I go on Lovenox (a fancy type of heparin you give yourself as shots in your tummy) since he feels I am high risk for blood clots with all the chemos I've had & the tamoxifen/megace I am currently taking. Meanwhile, he wants me to take a Prilosec and a baby aspirin daily. Until my oncologist chimes in, that's all I know. I can live with this minor discomfort as long as I know what's causing it. But I'm off my game for sure this week.

Linda,
I'm soooooo sorry to hear of your fatigue and discomfort <<<<LINDA>>>>. I have always been amazed at your stamina, attitude, and refusal to be anything other than WELL. When do you find out more about your liver and get the other half treated?

If you believe in the power of prayer, just know that you have Many many people praying for you.

HUGS and LOVE. Mary Ann

maggie_wilson said:

mary ann
i agree, too, with my doctor's more conservative, thoughtful approach. i don't think i'd stop at 5 if she didn't think it was fine to do. as i said earlier, she has said that really it's the first 4 chemos that are most effective. i think she was speaking generally, and not specifically to mine. i'm sure my ca 125 will go down a little more with the 5th chemo, and i don't see much value in a 6th. i want my immune system to be as strong as possible, and i'm glad my doctor has not thrown everything and the kitchen sink at me, as my surgeon would have done. he was saying i should have chemo a good six months before my chemo doctor thought i needed to. nothing had changed since i had seen him last 3 months earlier.

now the issue is platelets--never had this problem before, but now they're low. i had labs done tuesday, and if they're still as low as they were, i might have to have a transfusion. it's always something. i so want to be able to have my last chemo cycle the next two mondays. my acupuncturist said having chemo on 8/8 is very auspicious according to the chinese--something like double infinity. sounds good to me. waiting to hear re: results, if we don't hear by late afternoon, we'll call, but right now, no news is good news.

how long has it been now, since you're last treatment? sounds like you're doing well, which is great. as soon as this chemo is over, i'm going to pursue high dose iv vitamin c, which i've mentioned in earlier posts. i've posted on our ovarian sisters' site asking about vit c, and 3 women said the same thing: they all feel it's helped them immensely. two had iv vit c during chemo, and they attribute much of how well they felt during chemo, to vit c. and they're still taking it as a preventative. so can't hurt to check it out, since so few options for us.

take care, mary ann. trust everything is good.

sisterhood,
maggie

Vitami n C
Maggie,
I took vitamin C in power all throughout my 6 cycles of chemo.
I think it helped me to do better than I expected.
My WBC were never too low to stop chemo, RBC was a little low given I was in treatment, and platelets were fine.

My doctor, onco/gyno, told me it was Ok to take vitamin C. I did some research and there was not enough evidence of hurting patients; however, there was evidence of benefiting.

Ask your doctor what his/her thoughts are about it.
I hope your your CA125 continues dropping.

daisy366 said:

no high doses of Vit C during chemo
That's what my gyn onc said b/c Vit C is antioxidant and could screw up chemo. I think waiting till done is best.

Linda's Lovenox
I'm praying for you too Linda. I think we all have to be extra careful in the heat. Sometimes I walk and can't believe how tired I get. But then this happens to everyone in the heat. I know you are such a warrior but we all need to take it easy in this weather. One more month and we can walk again.

Love Ya, Diane