lymphoedema - Page 2

Tami · 11-06-2005, 02:15 PM

I wear a Jobst sleeve and gauntlet from a medical supply store. I wear it as a precaution when I fly. I recently got an infection in my arm - 4 inch red blotch that was warm to the touch. I immediately called my doctor and got in within an hour because my doc said it is extremely important to get on antibiotics as soon as possible at any sign of true infection - i did not have a scratch or anything so I am not sure of the source. I recently was out of the country for 2 weeks and she gave me a prescription to carry with me just in case I had a recurrance. Anther thign I do is to continue to walk my fingers up the wall while I shower as if I were a spider crawling and then back down to keep the muscles loose. I was afraid to use my arm after surgery and then after a while I felt as though it was becoming my wounded wing.

Other things I avoid are hot tubs and saunas, needle pricks, blood pressure cuffs, etc.

I have a friend that developed mild lymphedema 6 months ago, She was 2 years out from surgery and lifted a case of soda with her arm and knew immediately. So she did the wrapped mummy sleeve and therapy for a couple of months and her arm is now just slightly bigger than her other...so the good news here is that it can improve!

My arm occasionally feels tight and when that happens I try to keep it elevated to let gravity help drain it and I also do stretches. wrist rolls, etc.

Best
Tami

lia · 11-06-2005, 02:46 PM

thanks everyone for your advice, i see the manual lymph drainage therapist on friday, so hope she will be able to help and show me some exercises to do myself. the swelling is on the underneath of my arm at the top so i m finding it hard to elevate it sufficiently especially at night in bed, it also seems to me that it is in my side too altho my doctor told me it wasnt lymphodema. I am worried that it s more sinister than just how i was sewn up after my 2 operations - wle and then mastectomy, i see my oncologist on wednesday for my next herceptin and will ask for an ultrasound or mri scan as i m worrying non stop at the moment. i did read of someone s lymphodema being brought on by regional recurrance , so wonder if that could be the case with me as i do have a lump in my armpit that my gp (family dr ) said was fatty tissue.

sassy · 11-11-2005, 07:10 AM

I would be interested to know how many nodes those of you experiencing lymphodema had removed. I guess there is no magic number, but would like to get an idea of how many were removed. Thanks in advance for sharing your information.

Sassy

Just wanted to bump this up to see if anyone can share information on lymphodema and number of nodes removed.

Thanks,

Sassy
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margaret · 11-11-2005, 08:02 AM

Hi Sassy,

I had 16 nodes removed and I have mild lymphoedema on my left side. I am very physically active and I hardly ever wear a sleeve. I find it's most affected by the food I eat. If I indulge too much, especially in salty food, it gets more swollen. I don't let it prevent me from doing anything I feel like doing. I do hot tubs almost every day and swim and run and yoga handstands and headstands. For me, I kind of just chalk it up to my 'battle scars'. I also don't have reconstruction and alot of times I look 'crooked' with one breast. oh well! I'm enjoying my life anyway. I always think, thank God I didn't have to lose an arm or a leg. It's just who I am now. A woman with one breast and a left arm slightly bigger than the right.
Enjoy the Day!
Margaret

SusanAnne · 11-12-2005, 11:38 AM

I was dx with mild lymphedema this past August. My right arm was about 2 inches larger than the left. I went for lymphedema therapy 5 days a week, 1 1/2 to 2 hrs a day for the month of September. After each treatment I was wrapped "mummy style" as SandyBB mentioned. I was given a plastic vet glove to wear during showers since I was not allowed to remove the bandages (especially over the weekends). At the end I was measured for Jobst sleeves and gloves (2 pair) and must wear them 24/7, changing them every 12 hrs. I was given specific exercises to do each morning and evening. The only time I would consider not wearing them would be for a wedding or formal event. For flying I was directed to wear the sleeve and glove and in addition, wrap with ace bandages (leave on for a few hours afterward). I was given scripts for antibiotic cream and an antibiotic to carry with me in case of infection.

The sleeves should last 6 mos or so before new ones need to be ordered. If there is a weight loss or gain of more than 20 lbs since being measured you would need to be remeasured. I do not have durable medical equipment coverage so was prepared to pay the $500 myself but for some reason the insurance paid for them.

I am fairly new to this so it is taking some time learning to incorporate it all into my life. I do find it getting easier as time goes on. I wish the best for you.

Take care,
Susan

p.s. Sassy, I had 10 nodes removed, 1 positive

SandyBB · 11-15-2005, 11:12 AM

Sassy, 20 nodes removed - 3 of which were malignant.

11-16-2005, 01:00 AM

20 nodes removed. I had trouble with swelling and a constant ache starting with radiation therapy. Wore a Jobst sleeve daily for 2 years. I started an exercise program which included some work with weights and it has helped tremendously. I also had some axillary scar massage done by a physical therapist that must have opened up some of the lymph channels. This was vigorous stretching and tugging, not the light lymphedema massage. Anyway I no longer need the sleeve. I occasionally have some mild discomfort but nothing like it used to be. Hope this gives you hope.

StephN · 11-19-2005, 12:59 PM

Hi ladies -
I am going to start a new thread, but went back and read this one as it is full of GREAT info.
Thanks to all of you for getting me to think about something I had been ignoring!

P.S. I had 18 nodes removed - 8 were positive.

geraldine · 11-21-2005, 10:12 AM

I had 24 nodes removed 18 cancerous, slight swelling on the affected side. Not using anything at the moment but constantly massaging hand and arm....I manage a pub, so I am quite active but also very aware of my limitations.
How many lymph nodes are there ???????

Kim in CA · 11-21-2005, 04:27 PM

I am almost 9 years out from my surgery and had 36 nodes removed. I have done everything you shouldn't do with that arm, including even letting a tech talk me into using that arm for my PET scan. Most recently this year, I have been lugging around 6 gallon water jugs and lifting them into the back of my pickup. I know they weigh 50lbs each. In fact, I have to carry one in each hand to keep from tipping over! I never realized I shouldn't be doing this, and thus far, have never had lymphodema. My right arm/surgery arm has always been a little bigger than my left arm, but it was that way even before my surgery. I attribute that to the fact that I am right handed, in fact totally right side dominant, and can't do anything with my left hand.

Well, as usual I am feelling like a dork and can't believe how out to lunch I've been on this one! The hard part will be finding a way to accomplish the things I do without using that arm so much. Once again, saved by the board!

Kim in CA

Rachel · 02-22-2006, 11:31 AM

Hi

I was wondering whether anyone can advise me on cellulitis. My mother had breast cancer two years ago and had a lumpectomy and radiotherapy. She has had cellulitus twice since then the last time being over christmas when it was really bad. She had it in her right arm (where she had lots of lymph glands removed). Now she has just developed it in her right breast. I am so scared for her as that was the breast she had the cancer in. I was wondering if anyone can relate to this or any advice on treatments or anything really. I would be so very grateful.

Thanks

Her daughter Rachel.

SusanAnne · 02-23-2006, 02:06 PM

Hi Rachel,

You don't say if your mom has been diagnosed with lymphedema and what treatment she's had. Anyone who has had lymph nodes removed must be very careful with that arm/leg. Any cuts/scratches/insect bites should be tended to right away with an antibiotic cream and covered. You also have to be on the lookout for any redness to catch an infection early. Your mom should always have on hand an antibiotic (what if it's a weekend) to start treatment ASAP should she discover anything and then get to the doctor to be followed closely. Hope this helps.

Susan

Rachel · 02-24-2006, 06:11 AM

Dear Susan,

Thank you for replying to my email. She hasnt been diagnosed with lymphadema, it is cellulitis, she is in hospital and is having antibiotics through a drip. The last time she had cellulitis she had it in her right arm but now it has appeared in her right breast, where she had the tumor. I was wondering if it is a worry that it is in the breast. She is on arimadex and has been wearing an arm band protector everyday. She has been so careful but I guess when you have had lymph nodes removed you are prone to this repeating!

Thanks again.

Rachel

SandyBB · 02-24-2006, 07:55 AM

Rachel, cellulitis such as your mom's, and with her history, is usually caused by lymphedema. Lymphedema results when there are too few nodes in the area (i.e. removed during the cancer surgery) or when the nodes are damaged from radiation. Lymph fluid can not travel effectively through the lymph vessels in the area and this can cause the arm (or breast or underarm area) to swell. If the fluids continue to build up, they can become infected and turn into cellulitis.
This happened to me last year after a bad cat scratch - lymph fluids are used to battle infections so the cat scratch activated the fluid production but the nodes I had left in the area are damaged from direct radiation so the fluid did not flow correctly and ended up backing up in my upper arm, causing an infection. In my case, I was put on strong antibiotics and began aggressive lymphedma treatment once the infection had cleared. (see my previous note in this thread).

I am not sure if you were inferring this/afraid of this, but cellulitis has NOTHING to do with your Mom's cancer returning. It is a serious condition and will mean she needs to also aggressively treat her lymphedema, but it in NO WAY is related to her prognosis of staying cancer free.
Take care,
Sandy

Rachel · 02-24-2006, 10:06 AM

Dear Sandy,

A big thank you for responding. Your advice has really helped me to understand cellulitis and lymphedema. I am going to see my mum in hospital tomorrow so I will pass on the thread to her.
I guess so many changes have happened since the BC it is sometimes hard to keep up to date with what everything is and why it is there!

Thanks again

Rachel

SandyBB · 02-27-2006, 08:19 AM

Rachel, I am glad my post helped to clarify some things for you. I think I can understand a little bit of what you are going through. Although I am the one who had breast cancer, my mother passed away 4 years ago from another form of cancer (cutaneous t-cell lymphoma). It was very hard to get information on her care since she herself (and my dad) did not hear - or want to hear! the info the doctors shared - or in a lot of cases I don't think the doctors even shared much info since they could tell my mom and dad didn't want to know. My mom's cancer is pretty rare so it was especially difficult to understand her care and prognosis.

I hope this site continues to help shed some light on issues for you.
Take care of yourself - and your mom!

Her2nSue · 02-27-2006, 08:45 AM

Hi Everyone, is everyone that has had a mastectomy a candidate for this lymphedema or do you have to have lymph nodes removed with the mastectomy. I just had a few of the sentinal nodes removed which showed no infiltration. The surgeon said when I asked him about what to do and not to do with my arm, not to worry. I don't need a compression sleeve and having blood pressure taken with that arm would not be a problem either. So, after reading everyone's notes above, now I'm curious as to what your opinions are. I've been going weekly for herceptin and taxol and still only give them my right arm to poke. Did the same on my first rounds with A/C, too. Just in case the surgeon was being incorrect.
Thanks for help.
Sue