Officially introducing myself: upbeat UPSC stage 4B here.

evertheoptimist said:

Dose dense regimen is
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.

norma2 said:

Welcome!!
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

evertheoptimist said:

Helen,
You are most warmly
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.