Compression Sleeve/Lymphedema/Radiation

vlcarr · 03-07-2010, 10:28 PM

I had several sessions with a certified lymphedema therapist to find out what I could do to help prevent lymphedema.

Along with showing me how to do self massage, having my husband do it in her presence, giving me a detailed list of exercises to do, she also recommended I wear the compression sleeve during radiation.

When I asked the rad onc about this, she said she didn't think it would prevent it, but also saw no harm in me wearing it during the session.

Last week was my first week of rads and I started wearing the sleeve when it came in on Wednesday. I put it on before I leave and leave it on until I get my exercises done (suppose to wear the sleeve when I do those as well), which is immediately after I get home from radiation. This probably totals about 2 to 3 hours.

I'm getting 3 sided radiation and every other day they lay this gel pad over me that imitates tissue. The onc said the purpose of this is to force the radiation closer to my skin since they want to see a burn on the surface.

Here are the questions I have for you guys:

1) It seems my arm swelled after wearing the sleeve. I also had "dimples" in my skin in the wrist area after wearing the sleeve. Is is normal to have the imprints of the sleeve in your arm after wearing it? Could I be wearing it to much?

2) Has anyone had this gel material (it looks like a blob of fat) used during your radiation? How bad was the burn?

She does not want me to put anything on my skin to prevent the burn. They gave me Curel lotion to put on to help with dryness and itching. I haven't had those issues yet, but I am using the lotion. She did tell me they will give me things to help with the pain from the burn as that occurs.

I guess I just wasn't prepared for the fact they wanted me to burn. She said my skin would be back to 80% normal about 2 weeks after I complete radiation. She also told me I would experience a 15 to 20% loss of my lung function.

Just looking for someone who might have had a similar experience. This is NOT as bad as chemo, but darn, I wasn't expecting this either.

Thanks so much.

vlcarr · 03-08-2010, 09:33 AM

Anyone? Thanks.

hutchibk · 03-08-2010, 11:25 AM

I wish I could offer advice, but I didn't have axillary radiation... I chose not to.

The only thing I can speak to is that I wear my sleeve pretty much only when I fly on an airplane. Over my 6.5 years since surgery, there has been the rare occurrence that I have had a mild flair up of aching or heaviness in my arm from any variety of causes (backed up lymph drainage), and I have worn it for a day or two at that time. I sometimes wear it for 5-7 hours if my flights require it, and have never had my arm swell after wearing it or any dimpling. Did you have an official fitting for your sleeve? If not, you should be assessed for the proper size sleeve... if you did have it fitted and ordered for you, let the specialist know what you are experiencing. Also let your lymph therapist know and they might have info and solutions.

WolverineFan · 03-08-2010, 11:27 AM

Vicky,

I haven't had radiation, but my arm swells when I wear my sleeve when I fly. Its not too bothersome when I first put it on, but by the time I land, I am ready for it to come off. I just figured the sleeve was doing its job, but I am not really sure.

Sorry that I couldn't have been more help.

vlcarr · 03-09-2010, 10:11 AM

Thank you both for giving me a response. Although you could not help with the radiation issue, I still appreciate you sharing your experiences with the sleeve.

Sounds like I need to contact the therapist.

Will keep marching forward!

michka · 03-09-2010, 11:13 AM

Hi Vickie. During radiation they put a sort of a heavy soft pad on me. They explained that it was to keep the radiation on the surface and prevent it from penetrating too much. I do not know if this is true since they lied to me about other things. Michka

Jackie07 · 03-09-2010, 11:31 AM

Vicky,

I hope you will get some good answer from the therapist.

I had had lymphedema problem during chemo in 2007 when I got some very tiny bug bites picking figs in the backyard. The bites caused cellulitis which resulted in swollen arm and hand. My therapist had told me to wear my compression glove and sleeve all the time except when I sleep. But my oncologist (who probably did not realize that I had had cellulitis) continues to comment in a way like I don't really need to wear them.

The last time I saw the therapist for shoulder/neck pain (Oct. '09) she told me I needed to get a new sleeve since it had lost some elasticity.

I think it is great that they are taking preventive measures for you. The swelling was likely caused by the radiation and the sleeve had kept it from getting worse. If the dimples are caused by the sleeve being too tight, the therapist should be able to order you another one without extra cost.

5 1/2 more weeks to go. Hang in there.

vlcarr · 03-09-2010, 07:38 PM

Thank you all so much for your responses. I wore the sleeve yesterday and today but took if off in the changing room right after radiation and it was not as bad.

I've contacted the therapist to see when I can stop by and have her take a look at the sleeve. They did measure me for it.

It's funny--the mastectomy scar has never hurt. It seems all my problems are on the side where the drainage tubes were and where they lymph nodes were removed.

Michka, she did tell me the pad was to bring the radiation closer to my skin versus going deeper. I think I said they put that on me every other day.

Did anyone else have x-rays every week? They did them the first time (a week ago yesterday) and did them again yesterday. Since I see the dr every week I will ask if I will be getting them every week. Just wondered if any of you had them every week.

Sandra in GA · 03-10-2010, 03:02 PM

Vicky,
That rubbery pad is a bolus and like you said, it is supposed to bring the radiation to the skin. They began using one on my chest and under my arm when those two sites were radiated about half way through my treatment. They also radiated my supraclavical nodes from the frot and back and did not use it there. My radiation oncologist down at Mayo in Jacksonville (she does all the breast cancer patients) told me to put pure aloe on after to prevent burning. I wonder why you dr wants you to burn. I also applied cold packs and she was very impressed with the condition of my skin and even wanted to know exactly what I did to keep my skin in such good condition. I got the impression that she was going to suggest this to future patients.

I also had visits with a lymphedema therapist who had me measured for the compression sleeve and taught my husband how to do the massages. The massages seemed to really help whem I felt a fullness in my arm or chest area. I wore the sleeve during these times also. No one told me to wear it during radiation. My main problem during radiation was staying in that position with my arms over my head. I had had rotator cuff surgery about six months before finding my lump so not moving that are during the x-ray sessions really made my arm hurt. I did have the x-rays every week. I think they were to make sure everything was lined up as it should be.

Good luck. All will heal with time and you will be grateful for the security of knowing that radiation gives you a 50% better chance of having any local recurrances. Since I had 21 positive lymph nodes, not having radiation was not an option I could live with even though I came close to not having it.

Sandra

vlcarr · 03-10-2010, 03:36 PM

Thanks Sandra, very informative.

I can so relate to laying in that position. I have to turn my head to the left. I had major neck surgery right before I found out I had BC, and of course, my left side is the bad side as far as my neck goes. Some days I just ache in both arms between that and putting the right arm up since the cancer was in the right breast.

I did start having them put a towel roll under my neck and that seems to be helping.

I was given the option of not getting radiation but, like you, chose to have it. My rad onc said if she were me she would do it. She said she does not feel there is enough data out there to make her feel comfortable but if I just wanted to "watch" it I could go that route. Thank you for sharing that with me.

I know there is a lot of controversy on that issue but we all have to do what we feel is right for us.

Westcoastgirl · 03-10-2010, 03:51 PM

To tell you the truth I had a harder time with radiation than with the chemo, even losing the hair part, but probably only because by then chemo was behind me and behind one is always the best place for chemo to be. It bothered me to see my chest burn a little more every day. I had that thing you describe every second day to keep the radiation close to the skin. They could not get good margins on a surprise tumor and it was close to the skin and chest wall. I was fortunate in that I did not need any lymph radiation. I was a 50/50 call for my radiation but I could not say no to it even though I sure did not want it. They told me to do saline compresses and that gave me the greatest relief of all and I think helped not to hurt the skin so much but it got worse to tell you the truth up to a week after the end of radiation. There is a residual affect. But I must say a month later my skin was pretty much back to normal. It was like getting over a very bad sunburn. I am quite fair. I did not wear my compression sleeve during radiation. I just used the saline compresses, made my own saline the night before and then left it at room temperature but you can put it in the fridge for added cooling. I was shocked at how many facecloths were in our household. I just used Glaxol Base as my cream. That was it. I was not prepared for the size of the radiated area and I had a hard time with laying still, always had to stifle a cough or lived in fear of a sneeze and fought the urge to kick my feet and fling my arms around once everyone ran from the room. I just have a little bit of a tan left. Try not to sleep on your radiated side for a while as the extra heat generated makes the radiation burn worse, my theory anyhow. Take care.

Sandra in GA · 03-10-2010, 04:19 PM

Vicky,
Almost all of my doctors; oncologist, surgeon, and radiation oncologist wanted me to have the radiation. Only my plastic surgeon did not endorse it. My concern was that I may end up with limited use of my left arm due to lymphedema or bracial nerve damage. For me, this would have been devestating because I have very limited use of my right hand and arm. I had Polio when I was 18 months of age and the residual effect was that my bicepts and other muscles in my right arm atrophied. I cannot use it to eat, brush my teeth, etc. But those 21 positive nodes just kept coming back and haunting me. I made a full page list of questions and concerns to ask the radiation oncologist. Some of them could not be answered because I wanted research to back them up, and it hasn't been done yet. I wanted to know how Herceptin had affected outcomes with and without radiation among other things. She was able to answer several that concerned percentages of advantages. The funny thing was, she made sure I carried that list with me. She said, "It other patients see this, they are going to want answers too!"

Well, in a few years, maybe patients won't have to make these choices. Maybe there will be better recommendations. I just feel very lucky not to have developed this disease a few years ago before Herceptin and the treatments that are being developed and reported almost daily.

Sandra

vlcarr · 03-10-2010, 10:06 PM

Thanks WCG and Sandra,

I'm a realist so I appreciate the honesty of your posts. I keep trying to remember to count how many marks are on me but I keep forgetting--doing that a lot lately--lol.

Let's just say I don't think there is much they are not radiating. They first come from the left, then the machine goes to the right side and finally over the scar area. Tomorrow I'm going to count how many times they actually hit me.

I'm fair as well so expecting the burn although it has not happened yet--this is my 2nd week.

I remember when I went for a mammo while I was on the clinical trial and there was a lady in the waiting room with me. She had one breast removed about 3 years ago and I had not had my mastectomy at the time. She told me she was not prepared for her chest being caved in as much as it was and she was not prepared for how much burn she got during radiation. I now truly understand what she meant.

I'm going to see the lymp therapist tomorrow so she can look at the sleeve so I can feel better that it's the right fit. She's really nice, I sent her an e-mail about the imprints and she said she would be there tomorrow doing paperwork and told me to stop by between 2:00 and 3:30. She replied to my message within 24 hours.

I have my herceptin infusion first then radiation.

I keep a notebook handy and write down questions as I think of them. All of my doctors have commented on what a good idea it is. I've even gone back and reviewed it when I forget information. It comes in handy.

You are both such inspirations! Thank you for sharing your experiences. I will post back about the sleeve in case others may have questions about it.

Catherine · 03-11-2010, 12:43 AM

Hi Vicky,

My radiation was 4 years ago. I did not have a choice since I had some lymph involment. I think I had 33 or 36 rounds. They did burn my skin more than I expected. They did not use a jell and they did not warn me how "burned" my skin would be. I was exhausted by the time all the rads were over. Good news though, my skin did recover, it is fine now. I worked with a lymphadema specialist for about 8 or 10 visits. On my own, I worked with my massage therapist after that. My effected arm is fine, but even 4 years later, I can get some heaviness and a little swelling. I try to take very good care of my skin on my chest. And I try to stretch my arm and massage it. The lymph spec taught me how to help the lymph drain by massaging in the right direction. It will get better. In the meantime continue to gain all the information you can.

All the best, Catherine

Erin Koepp · 03-14-2010, 11:19 PM

As far as radiation went, I did not wear my sleeve. No one said anything about it. At the time of radiation I was also seeing a lymphadema specialist(I was having major axillary cording issues) I did have that plastic skinlike material placed on me during my 37 rounds of radiation. My skin was red, crusty bloody &oozing by the end of my tx but was fully recovered 18 days after tx. I used that zinc oxide ointment for burns on it. Also emu oil. But it did hurt alot, moreso than having the mastectomy. I had NO other side effects though. Good luck. You can get through it.

vlcarr · 03-15-2010, 07:42 PM

I saw the therapist last Thursday and my gauntlet came in as well. She could see some swelling in my arm so she wants me to wear the sleeve and gauntlet, all day, every day until I finish radiation. She also emphasized to me that under no circumstances should I nor my husband do self massage on any areas of my skin that are burned.

This is my 3rd week. I started feeling a slight burn last week and the rad onc said I would feel it before I would see it.

I will be so glad to get this behind me. Thank you all for sharing your experiences. It helps to know you have come before me and survived.