ANyone opted for no more chemo?

[YvonneS]

GP called today and said CT Scan shows metastasized to abdomen. This is after major debulking in Nov, where they removed appen., cancer on but not invasive to liver, bladder & stomach.  Then 8 rounds of Gemzar & Carbo. Is there anyone at this stage who just said no more chemo? What happen then?  I am tired.  I am sick, I just don't want to do this anymore.  Will probably see ono. next week.  He had given me two month chemo break. Thought problem was hernia's.  Have been to TWO GYN-ONO.  Don't know that either one was such a big help.  

[YvonneS]

Thank you.  that is sweet.  Had 2nd treatment (topotecan) yesterday.  so far, praise the Lord, so side effect.  Prayer does work.  Still feel okay.

[Curls]

I had a funny sort of thought about statistics today.  For those here dealing with ovca, they beaten the odds, of sorts, by getting the ovca (or even having the gene).  I'm hoping and praying for you that you once again beat the odds, by being one of the 17%.  (I hope saying this comes out as hopeful and not hurtful.)  My dad is one of the 15% that his surgeries haven't worked for, so that other percentage does exist!  

When I mentioned my mom and her grandmom, I left out the point of what I was saying.  Although your grandkids are young, they've gotten grandma love from you, and it will be stored with them forever.  It's such a special love and you obviously had a lot of it to give, that it will be a piece of them that gives them strength and warmth throughout their lives...even when they are 67.

I am amazed at how strong you have been and how well spoken about what you are going through.  Whenever the right time comes, long or short from now, the world will be missing someone special.   It's given me something to think about and to grow on.  Be well.  Cheri

[Kimchi]

Thanks for the suggestion, but can't find Maitake mushrooms here in Thailand.  I buy my reishi from my acupunturist who brings it back from China and takes it himself.  It's powder form and the taste is ok for me. Taste like dry chinese mushrooms which I have been eating my whole life (my mother is chinese) so no problem.  I dilute it in an inch of hot water, top it off with warm water and take my vitamins at the same time.  then top it off again to get all the scrappings off the edges.  this way I am getting my dosage of h2o and my vitamins a couple of times a day as well.
SimplyStar, I don't have Leslee's reaction but have wondered if my mushroom is not maybe mixed with something else as meds from China are notorius for having other (steriods) stuff added.  When I noticed my consistant weight gain, I wondered about my Reishi, so I stopped it for a while but nothing changed to I am back on it.  Believe that it and my high dosage of C have helped with side effects of the chemo and keep my immune system strong.  Perhaps she should change brands.

[alanpvegas]

You can actually go up to 390mg for CoQ10, that's become pretty much the standard.  I remember reading somewhere that the actual 'high' dosage, in general, is pretty high, so the 390 is just a drop in the bucket.

I have an article on CoQ10 if that helps:
http://www.alanpeto.com/ovarian_cancer/articles/7/1/Coenzyme-Q10-CoQ10-as-a-possible-adjunct-treatment-for-Ovarian-Cancer/Page1.html

[Helmar]

Hi Yvonne... I've been doing chemo for over 3 years ...pretty much non-stop, and I've never thought of surrendering to this lousy disease. I'll be still fighting this until the day they put me in my little wooden box, which I hope won't be for a llloooonnnnnggg time yet. :-)  No thought of giving up here... and I've not seen my hair for 3 years. :-)  In my mind, if you quit the treatments, the cancer has won. I hope you will feel much better after the 2 months break, and will resume your fight against this.
Wishing you all the best with whatever you decide. It's a personal issue that only you can deal with.
Hugs....Helen...

[alanpvegas]

Kimchi...have you tried Maitake D-Fraction (www.maitake.com is the best) instead of Reishi?  Maitake is the only one with the best oral intake of the medicinal mushrooms.

SimplyStar...know this was not a question for me, but that is not a known reaction...yet she want to be tested by an allergist to see if she has an allergy to mushrooms.  Everyone is different!  The easiest way to test is to reduce and eliminate the supplement and make sure all other variables are the same.   Monitor each day.  Next reintroduce...if the effects return, then the probability that it is the supplement is good/high.

[SimplyStar]

thanks  this is exactly what I told her to do,  is 300MG the recommended dose of COQ10.

[Kimchi]

Yes I too want to just stop...9 rounds of taxol/carbo since 10/06 stage 4 OC...Last week scan showed no changes so my onc wants me to continue 3 more than do another scan...I told her I wanted a 2 month break cause I wanted to try alternative meds.  She nixed the idea of the break cause was concerned the cancer would act up...Due to scheduling I am getting my break and am trying something else as we speak.  Still taking my reishi mushroom, high Vitamin C & others.  

[SimplyStar]

Leslee told me tonight she thinks the mushrooms are making her heart race,  ever heard of that ?

[alanpvegas]

freshair is right...you can even do weekly carboplatin even if you are refractory (resistant) to it (Danish study avaialable on the ACS website).  There are plenty of options and more emerging.  See if you can get on the Phenoxodiol trial near you...even if you get the placebo of the drug, youstill get the weekly carboplatin as part of the trial!

[freshair]

Ask your oncologist about low-dose taxol. You do it once a week 3x a month. It was the easiest chemo I did. I know it gets discouraging. I get those days for sure. I'm with you. But what I know is that this terrible disease is so painful as it progresses. So for me i want to put that off as much as possible. The chemo is a lot easier than that. The taxol kept everything stable until I became resistant to it.
Best of luck,
Helen

[SimplyStar]

Leslee  is on COQ10 and the mataki mushrooms, vitamine C, ginger tea, it seems to me that they are very close to a vaccine now that will surely help us fight this,  when we meet women who are survivors for years, it always raises hope for a future.  It is easy to become discouraged, I know,  but that does not help at all.  The world wide spotlight is on OVCA right now, millions are being spent on research, I have the utmost faith that this too will be conquered.  There are so many non evasive treatments out there,  use these 2 months to try some of them. The COQ10 is great,  diet, exercize, a positive attitude.  I wish you well.

[YvonneS]

Had  5 carbo/taxel in 2005, remission for 11 months. Then one IP therapy in Jan. after surgery in Nov.  It was BAD.  GP was a lot more concerned than others seemed to be.  Thanks, Alan, I read all your iput and I know everyone apprecaites all the work you do.  I wish the very best for your Mom.

[alanpvegas]

My mom's prior gyn onco said the same thing yours did.  We went to a regular oncologist and she had a completely different attitude.  If you are truely done with chemo, you can always go the alternative or supplement route....and since you're off chemo, there can be little excuse for any onco to say it will 'interfere' with chemo (they rarely do and only in certain situations; supplements are showing extensive positive use with chemo in recent studies).

There are other chemo options available, but it seems you are getting the runaround like we were.  There are ones that can be tried that may be easier on your body than Gemzar!  What else have you had?

Although I am not in the medical field, if you are interested in supplement treatment while you are on break let me know and I can help you find some good ones to take (I'm actually working on an article for that right now) that have shown promise in vivo (in humans).  For example, CoQ10 (Coenzyme Q10) supplementation has shown dramatic survival rates in breast cancer patients.  In the landmark Danish study, late stage b/c patients were included.  After one year a few were expected to die...none in the study group died.  The next year an additional 8 were expected to die.  None died.  Two patients increased their dosage to 300 and 390mg...both had tumor regression and disappearance confirmed by scans. Haven't heard about this?  That is because CoQ10 can't be made into a chemotherapy drug (i.e. patent it and charge thousands of dollars a dose) so the pharms aren't interested.  Well, unelss they can make an analog of it (refer to:  Genistien, a naturally occuring Soy Isoflavone and Phenoxodiol, the analog they made from Genistien for ovarian cancer treatment).  The other problem is it will *always* be a supplement because in order to get FDA approval for a drug to treat cancer you have to go through years of expensive clinical trials.  No pharm is going to do that for no profit (sadly...human life is not as important as increasing stock prices unless both happen).

You can discuss this with your onco/phys as well.  Good luck and remember it is you who are the pilot of your treatment, *not* the oncologist.  You decide when it is time to give up or what chemo to take.  They are supposed to be your co-pilot and guide you along the flight path.