rferraris

One of the side effects is blood clots.  You need to call your doctor ASAP!

Someone asked if I work for Komen and I do not. I do spend a large amount of my time volunteering in my local affiliate working health fairs, speaking to other survivors & newly diagnosed families, giving out educational material, etc. Another one of the hats that I wear with our affiliate is Public Policy chair. Komen has worked very hard in educating our National & State leaders on the importance of funding for access to equal treatment for all, early detection/screening & translational research (out of the lab and to the patient). I take it very personal when someone starts bashing Komen for what they "haven't" done without acknowledging what we have done. Do people not realize this organization started with a promise to a dying sister a little over 25 years ago to end breast cancer forever? Nancy Brinker started Komen for the Cure in her living room with $200 and a shoe box a names. Please read Nancy & Susan's story from the komen.org website. In the last 25 years Komen has funded more than $1 BILLION in research. Who else has done that? We've committed another $1 BILLION in the next 10 years.

FlaLady I'm sorry that you feel like you were treated like a lab rat. Where you forced in to a clinical? Shame on the clinic where you received treatment if they did not inform you properly of all the risks. I recently met a girl my age who was diagnosed about the same time I was. Her Grandmother was in a clinical trail 20+ years ago for Adriamycian. Because of her Grandmother's unselfishness, she helped save her life and so many others, years before her Granddaughters diagnosis. My cancer was too advanced to do a clinical because of my young age (stage III @ 35) but I'd do anything in my power so that another young family doesn't have to face the battle that mine has been on for the last 2 years.

Also, Komen's budget is nowhere near $40 billion. Komen has granted out $1 billion since 1982, and it's yearly budget is around $275 million. $200 million of that went to breast cancer research, breast cancer screening, and treatment.
75% of the money raised by the local affiliates stays in the local service area. But, before any money is granted, a grant request must be made and presented to the grant review board. If the grant review board agrees with the grant request, it is forwarded to the local Komen board for a vote. Sometimes, the board will turn down a request because there are additional questions that need to be addressed. But if your local affiliate is not spending the money that you see fit, then get involved with them. Don't just stand on the sidelines and point fingers.

You can't just call a local Komen affiliate and ask for money. The affiliates want to make sure every dollar they spend is accounted for, and goes toward the mission. The process I detailed above ensures that.

Again, I would encourage you to get involved with your local affiliate and help them make those decisions as to where the money is to be spent.

By the way, there is no Komen "state board". Each affiliate is their own autonomous organization.

What is a "board state"?

Each Komen affiliate (120+) grants money in their community based on needs.  25% of each race goes straight to National to fund research.  I would advice you to contact someone in your local affiliate about resources. 

 For more information on the grants that Susan G. Komen for the Cure funds please visit the Komen website (www.komen.org) and click on the grants tab.

If you think 4 weeks is a long time for a drain, try 8 months!!  I've had drains in so long that the stitches rotted and the drains fell out without me feeling anything!  If I don't have a drain, my abdomen fills with fluid and I have to go weekly to have it aspirated (200 cc's at each time). 

I had a bilateral tram in 12/07.  In February I still hadn't healed and they did a CT scan and found a seroma that started under my right arm and went below my belly button.  I've had scar tissue cut out twice since the first surgery in December.  Three weeks ago my PS injected a heart sealant to try to get the pocket to finish closing.  10 days after I woke up in a bed of fluid and had a drain put back in.  I've been under the care of my surgical oncologist, plastic surgeon, infection disease specialist, internist and oncologist.

If that's not bad enough, I know have lymphadema in my left arm and have to use a Flexitouch system 2 times a day, 1 hour each session.

BTW, I'm only 37!!! 

I had a bilateral tram on 12/11 and still have a large seroma in my belly (yes 7 months later).  I've hade numerous drains, weekly aspirations of serus fluid and the "pocket" is about half the size it was in Febuary.  On Wednesday my plastic surgeon will be injecting the pocket with Tisseal by Baxter Pharm.  This is normally used for heart & spleen surgeries.  From what I understand I'll be the 5th off-label use for Tisseal.  I'm wondering if the other four are on here?  If you've had any experience with Tisseal I'd greatly appreciate it.

 Thanks!

 Rachel

www.caringbridge.org/visit/rachelferraris

I just wore a cami with a little spandex in it.  Make sure whatever shirt you wear you won't care about getting ruined.  Like someone said earlier the markings will fade but mine went around to my back and down my ribs/belly.

Compared to chemo, radiation is a breeze! 

I'm not really sure where I should post this.  I had 6 rds of TAC in 2006 followed by 33 rounds of radiation (dx at age 35).  I've been on Tamoxifan since 12/06 and had a bilateral tram in 12/07.  I had since complications from my recon including staph and a large (12+ cm seroma) that has to be drained weekly.  At my regular follow-up today my doctor told me that I had protein spilling in my urine.  I know from my CBC at my onc. last month that my albumin is low as well.  Should I be concerned?  My dr. sent me home with a 24 hr urine study but with 2 kids and the last 2 days of school who has time to stay home for that!!!  Any ideas???

I just finished iron infusions with my oncologist.  My hemoglobin level dropped down to 8.6 and I had no protein in my system.  She said that I had the blood work of a starving Ethopian child.  All of this started back in January after I had a bilateral tram in December.  I went weekly for 6 wks for my iron infusion.  The first one took a long time because the risk of an allergic reaction is very high so they drip it very slow and only give you a little to begin with.  I finished chemo in 11/06 and radiation in 1/07.  When I finished my iron infusion my hemoglobin was only 10.6 and two weeks ago it had only dropped to 10.4 in a month.

We always have to remember that cancer doesn't play by the rules so there are no "rules" for treatment.   

I have learned that she is a Sr. and a communications major and went after the media.  Her boyfriend proposed last week in front of the cameras at Relay for Life.