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Working on Funding for Research for Serous Uterine Cancer (and the other rare uterine cancers)

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

I wrote my congressmen, senators about funding for our cancer. I also wrote Warren Buffet and then found Bill and Melinda Gates web site; they have funding for rare diseases so I wrote them too. I am going to try Michelle Obama and the NIH too. As I look at the research studies there just are not enough out there for us. I think because our cancers tend to be rare; most of uterine cancer is endometriod.

Susan Komen did so much for breast cancers. I'm not up for a race for serous uterine cancer on this chemo though. I think the more letters we write the more it helps. I'm giving it a try anyway. I wrote Oprah a couple of times and thought it would be an informative show if she had us all together on the show and then we could talk about the rare uterine cancers that most women don't even know they are susceptible to. I never heard back from Oprah.

I may be crazy but you have to start somewhere.

Diane

livealot's picture
livealot
Posts: 19
Joined: Jan 2010

I really appreciate what you wrote! I was thinking the exact same thing as I was coming back from my chemo treatment today. For the past few weeks since this recurrance, my husband and I, as well as many friends who are doctors, cancer researchers, chemists in the pharmaseutical industry, etc. have been researching which way to go with this treatment this time. There are practically NO studies for serous uterine cancer. Most of the studies are for ovarian cancers and our doctors are extrapolating the data from those studies to fit our uterine cancers since they are similar. I guess i wonder how they know they react the same way to treatment if there are no (or certainly not enough) studies for Uterine serous cancers?
Several months ago there was someone from an agency who posted and was looking into trying to get people together to talk about raising awareness, etc. for this cancer. Does anyone know if anything came of that?...or even remember seeing that?

these steroids are keeping me up. i guess I need to try to sleep.
Good night everyone!
Elizabeth

Always Hopeful
Posts: 234
Joined: May 2010

Hi Elizabeth

When I was told that protocol for USPC chemo treatments were based on ovarian cancer studies, I was, to say the least, uneasy basically because of what you wrote: "...I wonder how they know they react the same way to treatment..." There are certainly enough of us on this discussion board that might be willing to join forces with Diane to perhaps create greater awareness of this problem.

Hope you got some sleep. The steroids are causing me to have major sleep problems, too. The oncology nurse suggested Benedryl.

Peace and Hope,

JJ

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

This is in response to your question regarding why they think treating our cancer in a manner similar to ovarian would work. It actually wasn't 'til the mid eighties that scientists became aware that our UPSC was not ovarian cancer. Both are papillary cancers which divide so quickly as to make them difficult to discern where they originated from. They had just thought the uterine cancers were mets from the ovarian. so at least we are getting somewhere.

As to Diane's idea of asking for funding, she is right on top of the situation and I applaud her drive. I am going in another direction, but with some or similar names in mind. I thought of Michelle Obama, who I like to refer to as Mrs. President Obama, because she is so vigorous in her desire to have organic foods as a staple at the White House and make the public more aware of them. We may need, rather than going forward with the chemical companies isolated strategy of chem attacks, to go backward, and try instead to use the whole food as opposed to the patentable isolated part of the food. Look at turmeric, which is nearly useless when used by itself, well, okay, maybe not useless, but for certain when used as whole food synergistically with other foods that allow and encourage its absorption is so effective as a cancer treatment.

Good luck to us all,

Claudia

Always Hopeful
Posts: 234
Joined: May 2010

Dear Diane,

I'm relatively new to this, having been diagnosed in March, but have been very frustrated regarding the lack of info regarding UPSC. I admire your desire to obtain funding and would love to join your effort. Would you be willing to share the letters you have already sent? Again, being new to this, I'm concerned that I might not include necessary information in letters of my own.

I'll also try to research other funding sources, although you've probably done that already. Have you ever attempted to contact Fran Drescher? My primary care doc told me that recently she went with her mother to a Cancer Survivor Breakfast where Drescher was the keynote speaker. Perhaps she might be of some assistance.

Looking forward to hearing from you regarding this wonderful plan of yours. I can provide you with my email address if you would like.

Peace and hope,

JJ

livealot's picture
livealot
Posts: 19
Joined: Jan 2010

I agree with JJ that it would be very helpful to have a starting place or a little cheat sheet to get started with this campaign. I would definitely add my own story and its impact on my life and others. we each have such powerful stories to share with others to help bring about the awareness that we are out here and want to continue to live. the women on this board are truly amazing. I'm blown away by your stories, comments and lives you share. what a resource we have here.
my email address is: askelizabethLTC@verizon.net.

thanks!!
elizabeth

Always Hopeful
Posts: 234
Joined: May 2010

My email address is jajteach@aol.com

Wouldn't it be wonderful if Diane's sharing revved many of us to create our own grassroots movement! We can "hit" the funding sources from all of the country, as well as outside of the USA.

Thanks, Diane...you're the one!!!

Peace and Hope,

JJ

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

I so admire your drive and committment to raising awareness and obtaining funding for badly needed research into UPSC and other rare cancers. I wouldn't know where or how to start, but would love to add my voice to yours (and others) in bringing more attention to our stories.

Sending NED your way,
Cecile

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

Thanks Diane and Claudia for both your ideas - I will join the effort for a two prong approach - getting funding for research for alternative and traditional medicine that will help UPSC.

I just don't know where to start. I guess getting addresses and starting to just write.

Did either of you get any responses??

Mary Ann

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

Sorry I haven't written; I had company. Chemo is catching up with me. This one is easier but cumulative like the rest and I'm feeling the fatigue and neulasta makes my bone aches.

I heard from Warren Buffett. He gave his money to Bill and Melinda Gates Foundation and suggested I go through them. Just google them; they have a great web site and one that says rare diseases. I wrote a letter and included info about serous uterine cancer, that it is 15% of uterine cancers, very rare and agressive. I also mentioned that more women are going to get it as our generation has not had hysterectomies like our mothers. I was honest in telling them I don't know where to start (who to give money to) and asked their help. I asked themm to go to our blog site to meet all of these extraordinary women coping with few resourses. I told them most research goes to ovarian cancer. I also explained that we can't get the latest drugs because the insurance companies tell us "there is no research for our cancer supporting this." I also mentioned clear cell and sarcoma cancers and that they are also rare.

I will keep working on letters. I think Elizabeth's idea of explaining her personal situation is great; it makes it real and personal. Fran Dresher might be a resource; I suspect that she had endometriod but I bet she would help us too if we asked. good idea.
I am a little slow here; chemo tomorrow and can tell brain is slowing a little too.

It can't hurt to try. We may hit someoe who really wants to help.

PS I love that cat with the lime helmet.

Diane

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

Well, I had a nice long response composed...pressed Preview...and lost it. arrrgh. So here I go again:
Even though you're not feeling up to snuff, you are still out there pushing for the recognition of our types of cancer. You are an inspiration - thank you so much!
I'll be writing to the Gates Fdn as well as Fran Dresher. Like you say, it doesn't hurt to try.

Hugs,
Cecile

PS Re: Lime-hat cat: I love him too...somedays I feel just like he looks!

Always Hopeful
Posts: 234
Joined: May 2010

In spite of not feeling well, you had company and you still communicated the information you included in your letters, as well as the feedback from Warren Buffet. Thank you so much!

I do hope your chemo goes well tomorrow. Feel better and hang in there!

Peace and hope,

JJ

Always Hopeful
Posts: 234
Joined: May 2010

Fran Drescher's website, cancershmancer.org, is not opening properly for me...the home page is covered by two of the tabbed pages. At the bottom of the opening page is a link to the "contact" page. However, I can't see that either. Could someone else check out the site to see if you have the same problem. In the meantime I'll google to see if I can just get a contact email and alert them to the problem. If I'm not mistaken, though, I had the same problem a couple of months ago. Strange...

Thanks.

Peace and Hope,

JJ

shortmarge
Posts: 296
Joined: Nov 2008

Following is the web address to The Gynecologic Foundation. You might want to try them too.

http://www.thegcf.org/

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