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Old 05-06-2012, 10:35 PM   #6
vlcarr
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Join Date: Jun 2009
Posts: 343
Re: and then came...lymphedema.

I so feel your pain. I've been living with lymphedema since radiation. I'm back with my therapists twice a week now. I wish I knew why it flared up this time, but have no clue. I will not lie. I hate it. It's a daily reminder & just prevents me from moving on. Mine is worse in the heat, used to love summer, now I dread it. It has changed who I was much more than the cancer itself. Don't mean to be negative, but honest. I can only speak for myself. Then I feel guilty for feeling this way, because I "should" be happy I'm alive. I saw something recently that called lymphedema breast cancer's dirty little secret.

With all that out of the way.....I wear a compression sleeve all day, every day & have since I developed it during radiation, I wear a sleeve at night & I have a Flexitouch machine that I use pretty much every day. My arm size is not bigger but I have no doubt it would if I did not constantly stay on top of it. I am a good patient even if I hate it. I work on a computer all day. This last flare is the worst I've had. I have to take frequent breaks due to the pain. I am going to look into a program the Y has for bc survivors & try to get a more formalized exercise program to see if that will help. I do exercise the arm but not as regularly as I should. With a full time job and an hour a day in the machine it's a time thing. I feel like my life is consumed by trying to manage it & I resent not having time for a life, so yeah, I fall down with the exercises & admit that. I spoke to my boss on Friday about taking leave to do some of this during the day but I don't know how long I can keep that if it doesn't get better. There are VERY good therapists out there but do shop around. I switched from the ones I had originally. The hospital that treated my bc is the best here, but their lymphedema program is not. I've also found where you get your garments & bras is also very critical. I also have it in my chest & side as well so I also use swell spot. Sorry to go on & on but your post hit at such a frustrating time for me. I know more about lymphedema than I care to but please feel free to IM me if you ever feel the need.

I also travel from time to time & wear a gauntlet when I do that. I so hope you get good results with your therapy.
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Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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