katiejane

   Debbie,  Congratulations!!!!!!!!!!!!!!!!!  I know I'm in for a battle with my insurance company as they are known to be difficult to work with.  I started the process this week and figure it will be 3-6 months before they approve the Flexi for me, if they do. How long did it take you to get approval?

Thanks for sharing!  katiejane

  My LE started in my R arm  and then went under the arm around to the back and chest.  My L arm is now beginning to swell -the upper part of the arm, under the arm and around the back & chest.  I don't remember it starting under the scar. It just started hurting in my arm one day and I have progressed from there.  I'm currently looking to get a Flexitouch Pump system to help. I do twice daily drainage massage and wear compression sleeves on both arms.

I'm glad that you are being proactive-once you have LE, it never goes away. You just have to learn to manage it. You're on the right track!   Katiejane

  Hi All!   I just finished my demo of the Flexitouch system.  I must say that my arm feels better than it has in a long, long time.  At the most swollen areas in the upper part of my arm I lost anywhere from 2-3 cm with one treatment.  It moved fluid from the entire area and trunk area-all areas were decreased in size.  I went ahead to start battle with my insurance company-I would love to have one of these but I'm still very skeptical about the long term effects.  I was told they have been in use for 10 years(only 5 in private homes) and there has been nothing showing they increase the development of fibrotic tissue.  They (Tactile systems)seem to be an excellent, patient advocate company who will go to bat so that we receive the insurance coverage for the cost. If you chose to pay cash, then it's a 30% discount.  This is with a $5000.00 cash down deposit and they will loan the rest interest free-so monthly payments putting the cost at $7000.00

I could go ahead and buy it out of pocket and the Flexitouch people still will go to bat with insurance to get full coverage for you and you will get your $ back.  Meanwhile, you will already have the Flexi in your home to use.  By the way, the pain with the LE is much, much less after this treatment. I know that it's temporary at this point but with daily use, wow I can't imagine feeling this good most of the time.  I think it's called quality of life!  katiejane

  I was 51 & I found the cancer myself on the same day I had a digital mamo and Physician manual breast exam!  He told me I was clear and good to go for another year!!!  I found a new surgeon, had a biopsy w/ bilateral mastectomy within the week!  How quickly life changes!

   Hi everyone,      Well, I'm still having problems with this new swelling that developed 2.5 weeks after my hyster/ooph/bladder repair.  I've seen my LE therapist several times and continue to do my massage twice a day at home.  At my 2 week check with the GYN she said the mesh used for the sling was causing some erosion of tissue (vaginal) due to lack of estrogen. Much to my objections, she wanted me to use Estrase Vag Cream, .5-1 gram every other day for 2 weeks. This is suppose to help things heal and stop the erosion. It was either use it or loose the sling..   This will be the only time I will use this product.  With this chemo brain I now have, it just dawned on me that maybe the estrogen in the cream is causing the fluid retention??  I remember retaining 3-5lbs of fluids with every monthly cycle.  Any feedback?    Thanks,  katiejane

  I have an appointment next Tues. for a Flexitouch demo. in my home,  There seems to be alot of controversy whether this is a good thing to use.  Does anyone out there know how long this system has been in use?  Has data been collected proving that in the long run, it doesn't cause the LE problem to be worse/permanent damage???  I have been to their site, done alot of reading, but there's nothing like first hand experience!!!  Feedback is much appreciated!!!!  Thanks!

Katiejane

   Thanks Binney!   Activity levels are increasing and I am beginning to see a difference.  Had a LE massage last Friday, one again today, and one scheduled for this coming Friday.  I drink alot of fluids and my body lets me know if I haven't!!  It's weird how we all get to understand what our body will tell us because of this journey!  I am not one to sit around and have been cleared to return to work on Nov. 22nd. I'm walking 1-2 miles a day and oh, lets not forget vacuuming and damp mopping floors!  It worked wonders yesterday!  Motivation to clean???  Yuck!

Thanks again for everything.     Katiejane

Linda Lou,  Everything was done vaginally and there was NO mention of nodes in the pathology report.  I know they must do pathology on anything removed from the body.  Maybe injury in the process, who knows.  I will stay vigilant-can't afford not too!  Will let you know how it all goes!

Thanks so much!    katiejane

  There are products for truncal swelling out there.  I have a Solaris Tribute vest made for mine---- I can't wear it.  I was measured by a LE Therapist, it didn't fit right and made the LE on my upper sides worse.  It was sent back for alteration--it still doesn't fit correctly so now I still have nothing to control the swelling.

Ratbait, you spoke of "shapewear". What is this?  I would love to find something that gave compression for day wear-something I could wear under my cloths that didn't cut into my swollen, sensitive areas under my armpits----something like a spandex Danskin, either short sleeve or tank top style.  Does anyone know of anything like that??  katiejane

Lisa,   Sorry------ that's what it was---the node involvement. He did say that the highly er+ cancer is what you want to have IF you have to have this disease.  The Tamoxifen and AI's that we take for 5 years are more effective in preventing recurrence. Thanks for sharing this information.

Katiejane