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Calling Linda, llight, Maggie, Jan, Ro, Diane, Culka, Claudia, Maureen, Barb, et al. Are we up to raising money for research?

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

Here it is, Ladies,

I'm really excited and encouraged about the conversations here. A few weeks ago I, thanks to Maureen suggestion, I wrote to UPSC researcher, Dr. R. Wendel Naumann. Much to my surprise and excitement, he responded with recommendation with we raise money for research. No small task for anyone. Here is his correspondence which he said is OK to share here. It's a long read, but important information.

I hope there is interest to work together to raise money. We are the ones who will benefit. Let’s be proactive. I know we have many skilled people here – professional fundraisers, researchers, writers, etc. Let me know your thoughts on doing something Mary Ann-

First letter: Thanks for your kind note.

As you know USPC is a relative rare disease relative to adenocarcinoma of the uterus. We now know that complete staging and chemotherapy are both necessary to improve the outcome of patients with this disease. Unfortunately, there is still a lot we don't know. With my work through the GOG on the Uterine Corpus Committee, the biggest challenge we face is the lack of clinical trials for UPSC. The GOG has opened trials for patients with high risk endometrial cancers such as UPSC. To date, all trials that have tried to look at these higher risk cell types have closed prematurely due to lack of accrual (UPSC patients have been included in trials designed for all patients with endometrial cancer). Currently, only about 3% of all cancer patients participate in clinical trials that will lead to new treatments for cancer. This is not enough to support trials in relatively uncommon cancer types. It is important that cancer survivors get the message out about the importance of these clinical trials and support the mission of the GCF (cancer awareness and education) by encouraging donations to that foundation to do the same.

We are now working on new drugs for ovarian and uterine cancer which show great promise. However, the current stance of the FDA is that new drugs will not be approved if they are more effective in shrinking tumors but will only be approved if they demonstrate a survival benefit. Unfortunately, this very high bar is likely to make approval of new drugs very difficult (particular in ovarian cancer). I would also encourage you to organize a campaign to your Senate and Congress to increase the approval of new cancer therapies by the FDA.

Overall, my point is that it is our patients and patient advocates that are the real support in cancer research. We will continue with our efforts, but we need all the help from you we can get!

Second letter: …. I was actually out of the country for a couple of days but it was to work on
protocols for new drugs in endometrial cancer. There are some exciting compounds that will be entering into phase II clinical trials in the near future that may be particularly relevant to endometrial cancer.

You are more than welcome to post my comments on line (please edit as needed).

Concerning your specific question about UPSC research, one thought would be to put together a specific research grant. I think the GCF would be the best organization to work with on this endeavor if you decide to proceed. They are willing to handle things like this and I have posted their response and contact information below. Let me know if you have any questions.

Sincerely,

RWN

R. Wendel Naumann, M.D.
Director, Minimally Invasive Surgery in Gynecologic Oncology
Associate Director of Gynecologic Oncology, Blumenthal Cancer Center
Carolinas Medical Center
1025 Morehead Medical Drive
Charlotte, NC 28203
wnaumann@mac.com

Begin forwarded message:

From: Janet Wykoff
Date: July 6, 2010 1:51:06 PM EDT
To: wnaumann@mac.com
Cc: Karen Carlson
Subject: RE: Disease specific Awards/On behalf of GCF

Hello Dr. Naumann

Karen has asked that I respond to your email as she will be on vacation
for the next week and we didn't want to wait to get back to you. First,
thank you for thinking about us during your conversation with your
patient and for contacting us. GCF is always eager and happy to add to
the list of available research grants that we can offer - and to offer a
disease-specific research grant such as the one suggested here - Uterine
Papillary Serous Carcinoma - is certainly within the scope of our
program.

The starting level of our grants is $27,500 ($25,000 grant/$2,500 admin.
fee). In the event that we get several $10,000 plus donations
designated to research we will combine them to reach the minimum $27,500
level - as long as all parties agree to the research criteria.

Depending on the type of fund raising that the group does, we can offer
materials, etc. And of course, all donations are tax deductible. In
the past, people have held golf tournaments, hosted cocktail parties,
done mailings to friends, put together pledge activities - walks,
swimming laps, etc., and directed donations to GCF instead of sending
wedding, birthday or anniversary gifts. As you can see, quite a
collection of ideas.

I'm sure after you've shared this information with your patient that
there will still be additional questions I would be happy to help
wherever I can as is appropriate. Please feel free to contact me as how
you would like to move ahead.

Again, we appreciate you thinking of GCF and look forward to working to
make this happen. Thank you and...

Best regards

Janet Wykoff
Gynecologic Cancer Foundation
230 W. Monroe, Suite 2528
Chicago, Il. 60606
Phone: 312-578-1439
Cell: 312-315-1979
email: jwykoff@thegcf.org

kathybd
Posts: 126
Joined: Jul 2009

I am totally impressed. I have adenocarcinoma; but found this letter you received to be very promising. Will help however I can. Will watch for further postings on this.

Kathy

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

This sounds like an excellent start into gaining more research. I'm game to do whatever it takes to help. What can we do?

I'm at your beckon call as you seen to have started the ball rolling....lets keep it going.

Jan

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

You aren't talking about raising tens of thousands of dollars; research costs HUNDREDS of thousands. The federal gpvernment occasionally puts out very disease-specific Requests for Proposals directed to researchers, medical universities, and private scientists where White Papers (concept papers) on potentiall research projects compete. I check the federal register daily to review the new offerings in federal grants. Drugs companies often fund research, too.

I love the idea, but it may just be too big for us. We have to partner with a researcher to be eligible to apply for anything. I'd like to see our UPSC group be the SUBJECT of some type of web-based research. If we could get a plan for something on a scale realistic for us, I'd be interested in helping. Research grant funding is VERY competitive and the project has to be well defined by a researcher before any grantmaker will consider funding it. I have very (VERY) limited time to devote to this as I am in active treatment currently and running a business. But I'll jump in and out of it with you.

Ro10's picture
Ro10
Posts: 1462
Joined: Jan 2009

Unfortunately I have no experience in grant writing or doing any research either. I agree we need something for UPSC but I sure do not know where to start. Any suggestions are helpful. I expect I will be in treatment soon, and will have limited time to help. I have looked for clinical trials and they are very limited for UPSC, even for uterine cancer. Lots for ovarian and breast cancer. I am interested in hearing more.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Improve Community Oncology and Cancer Treatment Research!
Community Clinical Oncology Program Groups
POSTED: 7/16/2010
FUNDING SOURCE: NIH
ELIGIBILITY: Nonprofit and public agencies, including IHEs, that are located either at an NCI-supported Clinical Cooperative Group or at an NCI-designated Cancer Center
$ AVAILABLE: $1,800,000
GRANTS AVAILABLE: 3
MAX GRANT SIZE: N.A.
DEADLINE: 8/16/2010 (LOI); 9/16/2010 (final)
CONTACT INFORMATION: http://grants.nih.gov/grants/guide/rfa-files/RFA-CA-10-010.html
DESCRIPTION: Grants to develop and conduct state-of-the-art cancer prevention, control and treatment clinical trials with significant involvement of community oncologists and populations they serve.

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

I agree that I am interested in UPSC research specifically and don't have alot of time either - I'm still working fulltime and trying not to take on too much. Thanks for your input Linda, I thought you'd be the expert on this topic.

Nevertheless, I am going to talk to our local ACS people and even my doc to pick their brains about this. I thought 27,500 was doable but millions seems overwhelming. Maybe direct contact with MD Anderson and other research hospitals would give us some sense of how realistic our modest fundraising would be.

But, I remember reading about others who started out with a goal to raise money and achieved incredible things - like the man who built schools in Afghanistan (3 cups of tea).

I encourage you to keep mulling this idea around and let's keep talking to each other.

Sisterhood! - Mary Ann

MoeKay
Posts: 63
Joined: Feb 2004

Although I had adenocarcinoma, based on a quick search, it appears that UPSC cases are roughly 10% of the total endometrial cancer (EC) cases diagnosed annually. The ACS reports that 43,470 cases of EC will be diagnosed in 2010. I believe that means that approximately 4,347 women diagnosed this year will have some percentage of UPSC cells in their tumors. Given that only approximately 3% of women currently participate in clinical trials, I suspect that you're talking about roughly 129 of those women diagnosed with UPSC this year signing on to participate in a clinical trial. I haven't thought this through well, but am wondering whether it would be feasible to conduct a study solely on UPSC, without also including, for example, women diagnosed with clear cell and/or grade 3 adenocarcinoma. My initial impression is that the UPSC numbers don't seem high enough to generate statistically significant, meaningful results.

I was diagnosed last summer with an extremely rare lung disease called eosinophilic pneumonia. There have been no prospective, randomized studies to date on this disease, no doubt in large part due to its extreme rarity. Is this analogous to the situation with UPSC? Is there some way to address this problem?

What do the rest of you think?

Maureen

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

You are right. Which is the reason that I, and hopefully others with UPSC, want more research done on this rare but aggressive and deadly cancer. Like Dr. Naumann pointed out - most research is on the larger more common cancers.

How can we get more studies and more attention paid to this small subset of uterine cancer?

shortmarge
Posts: 296
Joined: Nov 2008

Susan Koman's sister started the fight for breast cancer and look where they are now. So what says that we cannot do this...

It was surprising to my Oncologist that I have met so many UPSC sisters here.

Since we are so close to ovarian cancer maybe the two groups should ban together!

Hugs,

Marge

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

thanx especially to mary ann, and to all who responded. i, too, thought $27,500 was eminently doable, but was skeptical at the low amount. i do think it will take millions to get any kind of study going on upsc with or without joining forces with ovarian cancer, and i also would like to see upsc as the subjects of such a study/trial. i think it makes sense to pursue this as far as we can re: information, and see what seems possible for us to take on ourselves. i know we could raise thousands, i'm sure, but millions, probably not. still, getting the word out, talking to our doctors, talking/writing to experts in the field--both fundraising, like linda, and researchers/clinics/ etc. is an important first step. so, i'd like to see where this can go, and would like to participate as time permits.

sisterhood,
maggie

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I am not sure how to start. I know it takes alot of money. I think I am going to write the FDA. Also, Michelle Obama. President Obama's mother died of ovarian cancer. It looks like they are making it harder for us! I also want to write the NIH. How about that Gyn group (is that GOG?)

I've been in the mountains. It was cool and wonderful. I go to surgery the 18th.

Hey, maybe Dr. Oz would let us go on TV? I got no where with the Gates Foundation or Oprah.

Diane

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

Thanks, Mary Ann … as well as those who have added input on the feasibility of fundraising / research.

Numbers for UPSC do seem quite low in comparison to other cancers, ovarian in particular, receiving much press and hence $$$s, research.

I have wondered if perhaps grouping all gyn papillary serous cancers: UPSC, ovarian ca, primary peritoneal ca – seeing if they are really just manifestations of one disease. They all tend to follow similar treatment protocols, prognoses, etc. This could open many treatments as ‘approved’ for all where insurance approvals for treatment are required. As well, perhaps looking at potential causes for these cancers based on the common cell type.

A focused approach that ties in other similar cancers, and includes UPSC, could make it easier to be eligible for large funding opportunities, to increase number of eligible participants, to find research centers that could be interested in taking on such a project.

This obviously puts UPSC on the back seat to ovarian, but would at least allow for being included in studies. I know when I am talking with fellows at the med ctr where I am treated, they tend to just call it ‘papillary serous’ without a reference to specific point of primary/origin.

Just my 2 cents. Fight on, fight on! Annie

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

Maybe this is the way to approach this.

And I remember that Dixie Carter recently died of Type II Endometrial Cancer - isn't that UPSC??? Maybe they will contribute. Doesn't hurt to ask. And Susan G. Komen is a good example of a "movement"!!

Great ideas here!! Keep those brain cells percolating! Mary Ann

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I also thought perhaps we could work with the gynecological group (I can't remember their name) I thought about joining them for research as our cancers are so similar. It might help in that direction.

Diane

california_artist
Posts: 851
Joined: Jan 2009

I was just over at the site where md anderson has hooked up with the anti cancer book guy, you can see my brain is fried, and they need funding for the non traditional research they are planning at m.d.a. I am planning on sending five dollars their way. A little step, but some help there could change the face of cancer treatment all over the world.

march of dimes is so named because they asked people to just send a dime and look where that's gone.

think of you daily. will eventually get out your way. it's the car more than the agoraphobia that's keeping me away.

Love you,

claudia

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

so if you're california artist, when are you going to make it back to california? got a spare room here in berkeley.....
sisterhood,
maggie

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