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Officially introducing myself: upbeat UPSC stage 4B here.

evertheoptimist
Posts: 140
Joined: Jan 2011

I went in for surgery with every expecting stage 3C ovarian cancer. Turns out, the origin was deemed "uterine", and the presence of cancer around bowels and some lymph nodes put my stage at 4B.

I will post my progress here. I know UPSC stage 4B really scares the hell out of people. If I am doing well, all of you with UPSC with less advanced diagnosis should have a reason to have a deep sigh relief.

Suboptimal debulking surgery due to the fact that they had to leave clusters of cancer around bowels (rather than risk perforating bowels). Chemo started 3.5 weeks later. Dose dense regimen - 3 weeks a round. Each round consists of day 1 (carbo/taxol/avastin), and days 8 and 15, taxol only. Avastin is added from round 2. No radiation for me: it's spread too widely.

I just started the round two yesterday - the full cocktail of Taxol/Carbo/Avastin.

I am feeling great. In fact, I haven't felt this good in months. No side effects of chemo. Haven't taken a single anti nausea pill they prescribed - so far. After the first round was over, I got the blood work done that included CA 125. Already the number has come down drastically, so I have a proof that chemo is working for me. But I already knew that since I noticed odd abdominal sensations that I attributed to cancer greatly abated within a few days from the first chemo session. I am already going on business trips while on a weekly chemo schedule - my doctor approves it.

I am convinced that I will be a long time survivor, and I believe my optimism is based on facts and statistical analysis (I have a Ph.D. in statistics). I am relatively young (just turned 51). I am perfectly healthy otherwise. Have always lived a very healthy life. I am fit and an exercise nut. Have always eaten very healthy too. May I also add that in April last year, I got both general physical and gyn exams with no indication? Ironically, I believe that my general sense of well being and an extremely high threshold for pain masked the early warning signs that would have alerted other women earlier.

I am really not scared. Even if recurrence happens, so what? As long as you find a chemo cocktail that works for you, you manage UPSC like a chronic disease. Many people live with serious chronic disease for decades, and nobody thinks of them as a walking time bomb. I think there is overblown emotional baggage associated with the word "cancer". Compared to degenerative diseases, cancer, even a recurring variety, is much kinder to life. I am ready to start this journey.

Paradoxically, I am happier now than I was before I had cancer: I call this a blessing in disguise. I have always been independent and self reliant to a fault, and this condition let me lower the barrier and let other people in. I did not realize I have so many loyal friends absolutely devoted to helping me through this process. Love between me and my husband has never been so profound as it is now, and kids (age 19 and 17) are doing very well - ok they are scared a little, but they are on such good paths, both of them best positioned for their life right now. I even feel that 2011 is going to turn out to be the best year ever.

Right after the diagnosis, I shaved off 10 years from my usual life expectancy ( from 100: this is the number I thought I would hit). Now that I see how well I am doing, I am upping to 95. When I am going into remission, I will back it up to 100.

My attitude now is, every day I am auditioning for a miracle of permanent remission by doing everything within my power to qualify me for that: eating healthy, exercising, staying positive, being generous and giving to others.... Someone once told me that miracles do happen. I say, you gotta earn your miracle. It does not happen to people who don't work for it. OK, if I don't win a miracle of permanent remission, I will settle for a consolation prize of a recurrence every 10 years... that works too.

So, welcome me to this community. Remember, I am a UPSC stage 4B. If I can do it, so can the rest of you! Let's all work to live to be 100!

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

I just love, love your attitude. That's just how I think and know I will endure thru this journey of a million miles and enjoy life to its fullest.

One thing my OB told me after diagnosis Feb '09, with your "positive" attitude you'll get thru this very well. Keep up the good vibes and you'll be amazed even how much better you get thru the treatments. Right on he was!!!!

I was diagnosed with uterine stage 3 (MMMT) 2 yrs ago and have been NED since my last treatment July '09. I endured 6 rounds of carbo/taxol and 33 rounds of external pelvic radiation. The first 3 rounds of chemo were okay, but by the last 3 my butt was dragging big time...NOTE: chemo is cumulative and towards the end it will start to zap you more. I felt just like you at the beginning, had the energy, but as time went the energy seemed to slip away. Last 3 rounds I had the neulasta shot as my blood work was going downhill and didn't want to miss any sessions of chemo.

I believe we're all A STATISTIC OF ONE, therefore, don't listen to the statistics for our cancer (mine is MMMT,still aggressive like yours). What do they know is how I think?

Jump into the ways of taking better care of your body. Sounds like you did a good job, as I thought I was doing. But...there's so much more out there on certain vitamins, anti-stresser type things such as yoga, and lots of organic foods. Eat a plant-based diet, loaded with vegies, whole grains and beans... like a Mediterranean diet. So much you'll find on this topic on our site...search!

Cancer is a scary word and yes it can be overblown. In the end we do have another chance at life, whereas, a person who had a massive heart attack might be gone.

Keep up that positive attitude and know it will get you places -- the life-saving places!!!!! I look at cancer as a blessing for me too, it has forced me to rethink how I live and know each day is very special.

Our thoughts control our body.....Go out and enjoy each day....ENJOY~~
Jan

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Hi Ever
Annie here again - I am curious about choice of Avastin at this time as you have active cancer clusters on bowels. One of caveats to Avastin is the concern for bowel perforations if it is attacking cancer cells on bowels. Is this why they waited for second round to include?
Annie

evertheoptimist
Posts: 140
Joined: Jan 2011

Ummmmmm, that, I don't have an answer for.

The odd sensations I mentioned was most prominent around my colon area. I have become very in tune with my body, and until my first chemo started, I had this odd sensation of something squeezing my colon once in a while. I did not experience it as pain - I have a very high pain threshold. It was a clearly felt pressure. After the completing of 3 week, a full round (before the introduction of Avastin) that hard squeezing sensation became a very mild tingling sensation. That's how I knew right away from the beginning that I am a chemo responder (meaning, chemo is very effective for me).

Perhaps there is by now much less cancer cluster around the bowels so that Avastin works without a problem for me. We will see.........

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

it was a pleasure to read your post; and may everything you say become true. i too believe in miracles, and believe that they tend to occur when you've been working hard to make it so. i'm interested in your regimen since it's a little different than what most of us upsc women have had as a standard: carbo/taxol, 6 rounds. i'm especially curious re: avistan, and why your doctor feels that's a good drug for you. i also believe in the crap shoot theory of cancer: who gets it, when, what stage, whether chemo/radiation works or not, whether there's a recurrence or not. i believe in doing everything within one's power to help oneself, from diet, exercise, meditation, acupuncture, even tried a shaman....but, in my heart of hearts, i believe it's ultimately out of my hands. still, i soldier on, doing the best i can, and doing my homework.

hope you remain healthy and feeling good throughout your chemo, and though it tends to be true that it's cumulative, it may not be the case for you.

sisterhood,
maggie

evertheoptimist
Posts: 140
Joined: Jan 2011

Dose dense regimen is getting a good traction for the ovarian cancer due to a very well publicized Japanese study published last year. Carbo part is the same: the same dosage given every three weeks. Taxol part is different. It's given every week. Instead of 180 per(body weight unit) every three weeks, they are giving 80 per(body weight unit)everyweek. The idea behind is that taxol given in this manner proved to be far more effective since it allows the drug to work non stop rather than having it peak at the early part of the cycle, and let the cancer cells to have a break and regroup during the latter part of the 21 day cycle. Also, in the dose dense regimen, you are getting all together more taxol (80x3 = 240 vs. 180). This regimen is not for everyone. In the Japanese study, 1/3 of the women dropped out of this regimen - it's a tough regimen to follow through - not just logistically, but also you are getting a higher dose of Taxol.

Japanese study outcome was extremely significant statistically. In the course of three year observation period post chemo, women who were on that regimen had 11 month longer remission. It was particularly more effective for women with advanced stage diagnosis. Additionally, for those that cannot have an Intra peritoneal infusion for longer lasting drug effectiveness, this is a god send (I fall into this category).

As for Avastin, again, this drug is starting to be used for the ovarian cancer patients. It's a drug that helps kills the cancers by blocking their ability to form an abundance of micro blood capillary. Cancer cells that are growing very aggressively (UPSC cells) need to be able to create their own capillary. Avastin disrupts that process. It's an anti angio genesis drug (angio=blood, genesis=create). Recently, there has been some controversy about this drug's effectiveness for the breast cancer. But all early indications for its effectiveness for ovarian cancer are very promising.

I think it may be the case that it has not been approved for uterine cancer (including UPSC) - this I don't know for sure - another oncologist (medical, not surgical) at the hospital where I was operated on told me that she wanted to get an approval for Avastin for one of her patients but got denied over and over again. I don't know whether that "approval" was for the insurance company or from the medical board, etc. In my case, my doctor may have been able to pull this off because there was a difference of opinion regarding the primary origin of my cancer: he thinks it's uterine (hence his UPSC 4B diagnosis), but the pathologist at the hospital thinks it's ovarian (stage 3C). A second opinion of a very well known pathologist in Mt Sinai concurs with my gyn oncologist's opinion. Regardless, if the official report went out as "ovarian", he may have used that as a way to get me that drug.

My gyn oncologists said, UPSC behaves very similar to ovarian cancer, and he is letting me have the very best and most aggressive treatment that is becoming well established in the ovarian cancer side.

When he offered this treatment regimen, I was very happy. I have done enough research and I was going to push for this exact protocol if he had not offered it first. For second opinion, I consulted with gyn oncologist at Mt. Sinai about this regimen, and he told me that I am getting the best protocol he can think of and this is exactly what he would have put me on. He was surprised that my doctor was able to put me on this protocol including Avastin (see above). He said his other patients with UPSP are getting this protocol on a clinical trial basis, and then, they have one in three chance of actually getting Avastin due to the requirement for controlling placebo effects. So, it appears that the hospital pathologist opinion that this is ovarian cancer is helping me.

I hope this clarification helped.

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

Your post was inspirational to me, a fellow upsc sister (originally stage 3a but I think it was probably a 4 in retrospect). Your writing is optimistic. Sounds like you have a wonderful medical team and family. I hope that your job limits stress in your life.

Please keep us posted as you continue your journey. I need hopeful posts like yours.

Many blessings to you and all. Mary Ann

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

Your post and philosophy is inspiring. You've definitely done your homework and understand your disease and your treatment. I believe your pre-cancer fitness will serve you well in your journey.

I was particularly drawn to two of the statements you made:

1. You have to earn your miracles; and
2. Cancer is much kinder to life (than some of the degenerative diseases).

Please stay a part of this board and continue to pass on your words of wisdom. I hope you will also glean additional knowledge and definitely our support by being a member of this community. Sorry you're here, tho.

Suzanne

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

thank you for your very comprehensive response; i really appreciate it, and in fact, printed it, so i can have it for reference, if and when needed. i'm still curious re: avastin, it actually sounds like a very good drug. i will talk to my own doctors about it, though there's no question re: my dx, maybe because of the confusion about what kind of cancer you have, it's working to your advantage. sure hope so.

wishing you the very best on your journey. again thanx for your response.

sisterhood,
maggie

evertheoptimist
Posts: 140
Joined: Jan 2011

Maggie,

Avastin is a controversial drug. Some studies showed that it may increase heart failure risk (though, I actually read the study, and as a statistician, I thought the conclusion was very tenuous - long story and pretty technical).

That said, I believe the reason why I am a good candidate is because I have bulky disease left behind that couldn't be taken out during a surgery - Avastin seems to work well in this situation.

For others, the benefit may not outweigh the side effects.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I too love your attitude. I am glad you are doing well with your chemo regime. It is different than what most of us have had. I hope you continue to do well and feel well.
I also hope that all your predictions come true for you. You are right that you find so many friends as you go on this journey. In peace and caring.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I am a "the glass is half full" kind of gal myself. Attitude is everyting. Love your positive attitude.

I believe miracles happen all around us everyday. We just have to open our eyes and look. Glad to meet someone who sees them. Thanks for sharing. You are a blessing.

Norma

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

I was feeling one degree under my normal positive self this morning (a few nights poor sleep post my final chemo is the major contributor, I think).
Your positive approach and philosophy has buoyed me right back up to the top again.
Thank you
Helen

evertheoptimist
Posts: 140
Joined: Jan 2011

Helen,

You are most warmly welcome. So far, I have no chemo side effects to speak of, except ONE giant one. that is, chemo brain!!! I am actually happier now than before when I had no cancer. So, yes, I am officially insane. I am finally starting to understand the meaning of the phrase "fat, dumb, and happy" (OK. at 113 Lb/5'6'', I will have to gain at least 80 pounds to qualify, but that's just technicality). But through this condition, I learned to lower my barrier and let other people in. I was a fortress before.

Many people deal with a serious medical condition in a different way. Popular language of dealing with cancer is very militaristic: fight, battle, enemy, warrior, etc. I have a very different feel for this. I don't think of my cancer as my enemy. I certainly don't feel like I am in a mortal combat. I am very careful to avoid all aggressive language and military style phrases. I accept my cancer and I am at peace with it. No, I am not writing a final will. I intend to live decades more. What I am trying to achieve is a co-existence. UPSC 4B is not a curable condition (unless there is an unbelievable breakthrough soon). So, I must coexist with my cancer. If we can peacefully coexist next several decades, that's great. I have a visual image of my cancer as a tantrum throwing child. I must talk to her, soothe her, calm her down, so that she can play in the corner of the room quietly, rather than creating rampage around the room, knocking down all the delicate vases and precious collections of mine. She is part of me. Nobody from outer space came and injected this alien seed into my body.

Another mental image I have of my cancer is that of a charcoal in dirty water. Before the modern water purification system was developed, charcoal was used to absorb impurities of the water to leave it clean and safe to drink. Sometimes I have this image of my cancer. Last 10 years leading up to this point, I worked in very toxic environment (metaphorically): I looked glamorous on the outside in terms of my career success, but I felt like I was swimming in a toxic dump - I had to work with some truly evil people with truly twisted morals. In a very strange way, I feel that this cancer is absorbing all the negativity from the rest of me and metabolizing it. When my cancer nodules and tumors shrink and disappear, so will all the negativity it absorbed from me - then I can be clean and whole.

OK, OK. I am now truly insane, but hey, whatever works. I am at peace, and I feel that I will emerge whole, intact, and better than ever in aggregate.

So, those of you with diagnosis of anything short of 4B that I have, you have all the more reason to feel hopeful and balanced. We will emerge from this whole and intact - even if not medically, but in other ways that is under our control.

kathyf590's picture
kathyf590
Posts: 2
Joined: Aug 2010

Always great to meet someone with such a positive attitude- under any circumstances, but it's especially gratifying to find that attitude with a UPSC diagnosis. I have had difficulty finding others with UPSC. Seems we're a small and exclusive group.
Rummaging through the web, most postings I came across were not current. In fact some were years old- which made me wonder what had become of those women.(I finally decided to take the positive attitude that at least some of those women had recovered and did not need to share with the on-line community any longer.)
So, really nice to have you onboard. Thanks for your upbeat, insightful and informative postings.

Kathy

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