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UPSC question...........risk factors?

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

I'm still trying to come to grips with my diagnosis of UPSC. Does anyone know if there is a genetic predisposition to this type of cancer? I can find very little information online.

It also looks as if there may be a tendency for women with UPSC to develop breast cancer.

I'm having a hard time figuring out how I developed this when I live a very healthy lifestyle.

Is it true what my doctor told me? Just bad luck?

I guess I may never know the answers to all the questions I have........

evertheoptimist
Posts: 140
Joined: Jan 2011

no risk factor for me that I can think of. Have been a picture of perfect health all my life. Have always been thin. Healthy eating habit. Exercised daily/regularly. No consumption of controlled substance. No drinking or smoking. No family history of cancer. Relatively young (51).

Yet, I went from a clean annual physical and gyn exam in April to UPSC stage 4B in December last year. Suboptimal debulking surgery outcome (a lime sized tumor left behind).

I could spend forever wondering how I could have become a cancer patient with no possible risk factor. However, I would rather look at it this way: because of life long healthy living and an otherwise strong healthy body, I can emerge a survivor.

Currently in remission against heavy odds. Chemo worked amazingly well for me. Sailed through 18 weekly chemos straight without a break. No side effects other than the blood count and hair falling out. Exercised daily (1.5 hour) all throughout the chemo treatment phase.

I was a healthy eater before, now I am eating radically healthy, like close to 20 servings of mostly vegetables (only 1-2 in fruits). No sugar. No meat: beat, chicken, turkey, etc. No daily. No animal fat. No processed food. All organic.

I am not looking back. Just moving forward.

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

You have a great attitude! I know you will emerge a survivor with your great overall health going into treatment and beyond. I know this will help me as well. I guess that with time I will begin to process the fact that I was just "fine" one day, and the next I had this heart stopping diagnosis. But I do feel as if I'm getting over the shock and am ready to tackle what I have ahead of me.

I, too, have always been thin, eat healthy, and regularly exercise. I don't drink or smoke or have a family history of cancer either, other than my personal history of cancer (vaginal) 4 1/2 yrs ago. That was treated successfully and I had fully moved on from there. I am a school teacher and despite all the current issues in education, still love my job. I am 58 yrs old.

I know that my healthy lifestyle will benefit me as I move through treatment. I have had only one treatment of my 6 prescribed Taxol/Carboplatin chemos, and had no side effects from that one.

My support system is strong, and my very own sister (retired teacher) has obtained an emergency certification to be my sub for the times I can't be at work..........other than treatment/sick from treatment days I'm still planning to work.

That's interesting that you had 18 straight weeks of chemo. Were you in a trial? What vitamins/supplements are you taking, if any?

Best wishes to you and all the other incredibly strong women here as we all move forward to a healthy and cancer free future!

evertheoptimist
Posts: 140
Joined: Jan 2011

the protocol I was on is called dose dense protocol. It's weekly taxol, and once every three weeks carbo. Taxol dosage is much lower since it's a weekly regimen, but put all together, you get about 30% more total taxol.

Japanese clinical study showed AMAZING results with this regimen. I am a statistician, and when I read the results, my eyes literally popped out in terms of how both statistically and clinically significant this was. This was the best breakthrough in last 10-15 years in ovarian cancer researcher. Its outcome was better than most of the expensively developed new fangled drugs combined last few years. If this was a patenable drug, a pharma company holding that patent would be spending millions of dollars promoting it, taking the doctors to exotic places and wining and dining them telling them about the benefits of this protocol. This would be an instant, billion dollar block buster drug all over the news!

The reason why this regimen is so successful is, they surmise, it creates a constant presence of the drug (taxol) in the system. the problem with the normal one large dose every three weeks protocol is, the drugs stays in the body 4-5 days, and the it gives you AND THE CANCER CELLS a long vacation to recover from chemo. Dose dense regiment prevents that. Hence the amazing efficacy.

I think it's such a shame that still the majority of doctors are not putting women on this protocol: there is absolutely NO down side with at least starting with this protocol. If weekly infusion is too tough, the patient can always go back to the standard treatment schedule. At least, you should give it a try.

I learned about all this, and was up in arms to insist on this protocol in case my dr was like the most of the doctors who did not stay on top of the latest research or was too blind sided with the habit and familiarity to put me on this. Luckily, he offered it.

On the ovarian cancer site, this protocol is getting to be better known every day, and a great deal of discussion is going on. I believe that's because the clinical trial was mostly about ovarian cancer. However, UPSC is actually like ovarian cancer, NOT like other uterine cancer. It behaves the same way and requires the same treatment. As such, UPSC patients should really follow all the latest on the ovarian side.

You just had one treatment. If I were you, I would contact the doctor IMMEDIATELY and insist on modifying my schedule to be that of dose dense. If your doctor resist, do NOT give in. By now, I believe not all doctors are on top of everything, and many of them are not aware of the latest stuff going on. Your doctor's words are NOT the final words. I am supposed to be pretty good at what I do, but I make mistakes and do not always know all the latest stuff happening in my industry. So, why should I assume that doctors would never make a mistake or know everything they should know in their own field? I guess it's a case of one naked emperor recognizing another. If your doctor is not familiar with this, educate him/her.

More and more innovative doctors without a blind spots are putting their patients on this protocol. I would even go one step further. Not only the taxol, I would even insist putting carbo on a weekly schedule. There are already doctors, who are truly innovative. who are already doing this. Again, note: this is simply changing schedule, NOT involving any new fangled drugs with unknown side effects. At least all women should start with this protocol, and only if the weekly regimen turns out to be too tough, the should be put back on the standard schedule.

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

When it was first explained to me how the chemo schedule would be timed, the three week interval was one of the things that made the least sense to me. I figured, just as you wouldn't give a bacterium time to figure out how to become resistant to the antibiotic and then additional time to grow and spread all over your body while your drugs were not in use, it especially seemed, shall I say, stupid to give a really deadly cell like cancer time to regroup, metastasize, and then let me have it once they had a heads up as to the type of chemo that was coming their way.

Then, a year or so ago, I got a book, Foods to fight Cancer, that I have mentioned here on numerous occasions, that goes into the how and why of what he called metronomic chemo. Same principal, to my way of looking at it, as the antibiotic reasoning schedule. I did discuss one time about why I think things are the way they are, my thought is it's a matter of space and convenience, rather logistics. A doctor has a finite number of chairs, but an infinite undetermined number of patients. Say, six or seven chairs, 150 or more patients with cancer and all of those people with differing schedules. IF they could make it so that a patient could come in, get hooked up to some sort of portable thing and then go home or even to a nearby hotel or holding area, then I think the whole delivery system and the results would vastly improve.

And where oh where is the person who is informing all the loverly people of the myriad of other things they can do to increase their chances of survival??

It's a business. A health care business, but a business non the less. And what do all businesses want??

Were that it weren't so.

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

One would have to be to remain upbeat with a lime sized tumore left behind. You must feel like your are fighting like your pants are on fire.

I cannot even begin to say the level of admiration I feel for you right now.

A survivor, absolutely.

You are my new hero.

Biggest hugs ever,

claudia

evertheoptimist
Posts: 140
Joined: Jan 2011

thank you such kind words.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Sunflash, I was told the same thing when I asked about WHY - how could this happen?

My story is much like optimist's healthy lifestyle - Linda and others would say the same. Like optimist says, no use looking back. There's no answer to your question right now. The work for you is in the treatment. I like optimist's advice.

My best to you and all here. Mary Ann

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

Ok.............no looking back for me, either! I'm going to put all my energy and efforts into getting well. I guess there are things we'll never know.........or that may be revealed to us in their own time.

Have you ladies been working while on treatment? I went back to work today for a meeting....school officially starts tomorrow, at least for teachers. It really felt good to get back into a sense of semi normalcy.

I hope I have enough energy left over at the end of the day for exercise. I'm also going to look into the treatment protocol you're following, optimist. Are there any others on here that are doing the same?

So glad I found you, ladies! Thanks for taking the time to answer my questions!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Sunflash,

I did work during initial treatment - taking 2 days off on chemo weeks. I think it helped me manage anxiety. But work also has it's own anxiety. I recurred and continued to work until treatment became too much to manage (Last fall, I got daily treatments for 7 weeks and lots of appts).

My doc does believe in importance of lowering stress. When my FMLA was up, I decided to retire from fulltime work because - for me - I think work stress was having a negative effect on my health. Again, time will tell, but so far I have had good medical reports for the last 9 months. I now have the time needed to exercise and take things much slower. Luckily I have an employed husband and have medical insurance through his employer.

I wish you all the very best. Mary Ann

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