HER2 Support Group Forums - View Single Post - Would like to speak to someone with lymphedema

vlcarr · 08-11-2010, 05:18 PM

Sorry it's taken me so long to get back to this. I still have some folks to call but haven't gotten around to it yet.

I went back to work for 4 hours a day but get to work from home which is awesome. When I started back to work I started getting swelling in my hand and now I've developed some in my chest wall.

The glove they ordered for me just did not fit right. I have short, stubby fingers

so today they fit me for a custom one--hopefully that will not make my fingers turn blue.

I'm trying to avoid typing a lot at night since that seems to make my hand worse so that's one reason I'm behind on my posts. Please know that I appreciate everyone who sent me a message from this post. I do so want to talk with you but it's been crazy lately with work, pt and going back & forth to the boob store for various items.

Today I got the Solaris sleeve to wear at night and I also had to get new bras that have more support and are wider on the side as I have swelling there as well. No more pretty bras for me. She said I may be able to get back in those in a year

My therapist also wanted me to get a swell spot that I have to put inside my bra--man, I just feel that I have stuff stuffed everywhere!!!

This horrible heat is just making me more miserable with all these garments but I want to be as proactive as I can because my swelling is not bad and I don't want it to get that way.

Will wear the night sleeve for the first time tonight and the fitter said I should be able to tell a huge difference. I'm still doing pt 2 days a week.

They are working on my alignment which they say is way off. They feel a lot of this is due to my neck surgery which I was still in pt for when I found my lump last year. I also just started getting some massage therapy on my own to try and help with the neck issue.

Unless this improves I've decided to not get reconstruction next year because I don't want to make this worse. My surgeon insisted I wait a year from radiation so I have until May of next year before I can consider anyway.

Just wanted to give you all a quick update as to where I'm at right now. Thank you all so much for your continued support!

08-11-2010, 05:18 PM	#10
vlcarr Senior Member Join Date: Jun 2009 Posts: 343	Re: Would like to speak to someone with lymphedema Sorry it's taken me so long to get back to this. I still have some folks to call but haven't gotten around to it yet. I went back to work for 4 hours a day but get to work from home which is awesome. When I started back to work I started getting swelling in my hand and now I've developed some in my chest wall. The glove they ordered for me just did not fit right. I have short, stubby fingers so today they fit me for a custom one--hopefully that will not make my fingers turn blue. I'm trying to avoid typing a lot at night since that seems to make my hand worse so that's one reason I'm behind on my posts. Please know that I appreciate everyone who sent me a message from this post. I do so want to talk with you but it's been crazy lately with work, pt and going back & forth to the boob store for various items. Today I got the Solaris sleeve to wear at night and I also had to get new bras that have more support and are wider on the side as I have swelling there as well. No more pretty bras for me. She said I may be able to get back in those in a year My therapist also wanted me to get a swell spot that I have to put inside my bra--man, I just feel that I have stuff stuffed everywhere!!! This horrible heat is just making me more miserable with all these garments but I want to be as proactive as I can because my swelling is not bad and I don't want it to get that way. Will wear the night sleeve for the first time tonight and the fitter said I should be able to tell a huge difference. I'm still doing pt 2 days a week. They are working on my alignment which they say is way off. They feel a lot of this is due to my neck surgery which I was still in pt for when I found my lump last year. I also just started getting some massage therapy on my own to try and help with the neck issue. Unless this improves I've decided to not get reconstruction next year because I don't want to make this worse. My surgeon insisted I wait a year from radiation so I have until May of next year before I can consider anyway. Just wanted to give you all a quick update as to where I'm at right now. Thank you all so much for your continued support! __________________ 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