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A study I had so hoped for is taking place for UC

evolo58
Posts: 293
Joined: Dec 2017

Some time back, I mentioned a researcher doing a study on long-term survivors of breast cancer. Are there any common factors behind long-term survivors? Diet? Immunotherapy? Current conventional treatment? Holistic support? A combo?

Well, a doctor is doing a variation for uterine cancer as well. The study is in the very early stages. She hopes to get a group of 2500 women of all stages and types of EC, working with researchers in other facilities. to study what effects that modern treatments are having on women with endometrial cancer, and if any approaches work more favorably for long-term survival. Women will continue their usual treatments ... no placebos or anything. I've used the statement that repeated the old sentiment of how we need to not only study the planes on the ground, but the planes in the air to see how the plane works. This researcher is also interested in the planes in the air. I find this approach exciting. 

As we know, though, Type 2s/rare cancers are often underrepresented in studies. This researcher wants to include them, but they aren't easy to find, especially the higher stages. 

As of today, I am Woman #2499 ... or whatever number I am. (I don't really know, of course!) Smile An assistant approached me before my infusion today, and i signed the consent forms. 

I feel that we can't yammer on how skimpy these studies are, yet refuse to participate in research that seeks out these answers (as long as we aren't persuaded to do something against our own gut feelings). My name, SS no, etc., will not be used, but researchers will be looking at my medical records, so I have given away some of my confidentiality. But we need more answers. I pray that ALL of us here will be able to see them when this study comes out. ALL of us. And may we ALL be the planes in the air.

There is no official link to this study ... yet. It's still in its infancy. And I don't wish to disclose my location publicly.

But here is a little heads-up that someone is paying attention to us. We are not totally abandoned. I hope other reserachers follow with more accurate statistics, prognoses and treatments.

As for me, 17.2 CA-125 post-surgery. 13.1 or so before. I'm not overly worried, Surgery can affect the numbers, and I'm not quite four weeks out. Other CA-125s will probably reveal more. But 17.2 is Ok for now. it's in normal range, and not that different from the previous result.

Two more infusions ... GOD WILLING ... and a CT scan, and it's the three-month visits if the infusions and scan turn out OK. Please, please, please pray and think good thoughts that the infusions, test results, and most of all, that CT scan (which scares the crap out of me ... I'm so, so nervous about these now), will be fine. As many of you can attest, you want to get back to your life after months of surgery and treatment, thanks. I'd like to at least see if I could get a buzz cut look going this summer (well at least it may be more comfy in the heat, and I miss my hair), and be fit enough to get closer to my old exercise routines! 

 

MrsBerry
Posts: 102
Joined: Dec 2017

Bless you for agreeing to be included in the study. Every study brings the hope that, one day, women can be spared this disease.

 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Thank you, but it's a little frustrating to hear of a study about us that many of us would LOVE to participate in, but can't access any other information. How would we hear if there's any opportunity to participate? 

evolo58
Posts: 293
Joined: Dec 2017

The assistant approached me. I know I was joking here that my cancer was so odd that I probably WOULD wind up in a research study, but that was a joke! Or maybe I'm more psychic than I thought. I am being treated in a teaching facility, so that may affect the outcome. It's quite possible my surgeon knew this doctor and gave her some possible suggestions for her study.

The research doctor is using a large group of women in the main and branch facilities (I got my hysterectomy at the main facility, but go for treatments at a cancer care center branch facility), and if I'm getting this right, women in the facilities where the other researchers practice. It's not a huge sample, if you think about it that way. 

But it would be great if other teaching facilities put out studies that prove or disprove this one. MAYBE we can get more answers. 

I also thought my surgeon forgot about Foundation One. She did not. She is sending the sample late, but she is sending it. I'm gathering the researchers will be looking into that as well. It's a little weird to think they will be getting all that info (maybe even before I do!), but I feel it's necessary to finally give us a clue.

I'm not really sure if the coordinator has 2500 women yet. (She's asking them now, and #2499 is the first number I thought of ... I might just be #14, for all I know.) This is a study where researchers are going to look into some pretty personal info, so many women might refuse, and the coordinator may have to approach other facilities. I'm not sure which ones she'd approach, though. 

But your question does raise an interesting point: there are women here who might be willing to participate. They might have some precious info, and there is more access to age groups and other variables that might be hard to find.

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