Anyone else out there have 44 treatments of Radiation

amykins

Hi, I have not post here before but have found this site to be helpful. I was diagnosed with IBC June 1,2012. Started Chemo June 22 end on Oct.5. Surgery was Nov. 6. Started radiation on Dec.19 and end on Jan.21. I had to go to radiation twice a day five days a week for 6 weeks. In all it was 44 treatments. I understand that because of the heavy dose it would take longer to heal but didn't think it would be this long. I am wondering anyone else here has had this many treatments and if so how did you deal with it and how long did it take for you to heal. The doctors keep tell me it's just going to take time. I have been out of work for about 4months and I am starting to go a little crazy. I have gone back to Pt just to have lymphatic massage and keeping my shoulder moving. I tried going back to work but just can't do it. I was told to let the site get as much air as possible but if I need to wear a shirt to use Telfa(non-adherent dressing) over the site. Well I did and I am having a reaction to it. Everytime I put it on the whole area tighten up and starts itching. I saw the dr. today and they think I have a fungus around the site. I don't think that is what it is I think I just can't use the Telfa even the latex free kind. I am really frustrated. It's hard to stay warm without a shirt. So if anyone has any suggestions please feel free.Thank you!

Marianne52

I am in Rads now. They told me to use cool compresses. I would wear a very loose fitting shirt. The air will still get to the site. It will take time but you will heal. Good luck. Marianne

sbelizabeth

Amykins, I'm so sorry you're going through this!  I had 37 rads but I was on Xeloda at the same time and it sensitized my skin, big time.  I had some open, weeping wounds that really stung.  The biggest one started off around 2" by 7" and  from the time it burst open until it was closed over was about 3 1/2 months.  

What finally helped a lot was a dressing called "Vigilon."  It's like slippery snot with a firm plastic backing.  My dear husband, who has taken such great care of me throughout this whole fandango, figured out a way to secure it to my burn with paper tape and make a complete seal.  He changed the dressing twice a day.  I worked the whole time, including a business trip to Chicago.  He came along just to take care of me...

Sorry you're in so much pain!  PM me if you need more information.

amykins

Thank you for your replies. It has been a month since my last dose of radiation and I am still topless. I didn't realize it was going to take so long to recover. It is getting better. Thanks the suggestions.  I'm sorry ya'll are and have gone through this. It sucks.

amykins

Thank you for the support and the ideas. I decided to take a t shirt and cut out the area where the site is. I also like the sheet idea. It's getting better I can finally see it and feel it.  I do have a Caring Bridge page where I have posted pictures starting form when I got diagnosed to now. If you are interested let me know and I will send you the link. I will try to post more here.

amykins

Yeah I am also using the sheet idea. Short sleves are great if you are also having hot flashes. I did put my caring bridge page in my signature line. I also started using a pillow case over the site when I do wear a shirt. Since I can't use the dressing they gave me. So far it doesn't stick and I can use it more then once. Sometimes you just got to get creative.

amykins

Yes thank god for vicodin! I haven't meet anyone else that has had this many treatments as I have yet. I finally got the doctor to agree that I can't use the dressing. I have been using  Boiron Calendula ointment during the day and Alba un-petroleum jelly at night. It seems to be working it looks better and better every day.

I did put my caring bridge page in my signature. No for some reason my friend who was setting up the page had a hard time figuring out the donation thing and found another page that was easier to deal with and that page has expired. She did raise a good amount of money for me though. I have been very blessed  to have the my job, insurance,the hospital, family and friends. All have been really helpful and supportive. It is very humbling.

amykins

I did not know about Social Security Disability list. I have been able to get assistance through the hosptial and I have pretty good insurance. So my bills so far have been really low.I work for a small health food store and they have been awesome. I have been with this company for 6yrs and they are allowing me to work when I can. Also they have put out donation jars at the registers for me. People have been very kind with their donations.

Because I work in a health food store I don't like using petroleum products. The jelly I have been  using doesn't have any petroleum in it. Burt's Bees is good but they use citrus esstential oils in their products and I have an allergy to citrus. So I have to be careful with them. It is still getting better there is a lot more new skin coming in and growing. Soon I will be able to finally celebrate being done with this and work on getting health so I can have reconstrution if I want. Still deciding if I want to do that or not. Plus don't know if there is any skin damage from radiation. I will not know anything until this summer though. Thank you for the advice and the support.