Lymphedema

Hi Lynn: I had 7 lymph
Hi Lynn: I had 7 lymph nodes removed and my oncologist advised me to not lift anything heavy. 15 pounds the most, no blood pressure or needles. The other thing he told me not to do is taking hot showers, no saunas, or hot tubs.I make sure to wear gloves when gardening and try not to get cut in that hand. I've flown 4 times since I had my mastectomy and have not had to wear a compression sleeve. I guess it depends on how many were removed. Hugs, Lili

mmontero38 said:

Hi Lynn: I had 7 lymph
Hi Lynn: I had 7 lymph nodes removed and my oncologist advised me to not lift anything heavy. 15 pounds the most, no blood pressure or needles. The other thing he told me not to do is taking hot showers, no saunas, or hot tubs.I make sure to wear gloves when gardening and try not to get cut in that hand. I've flown 4 times since I had my mastectomy and have not had to wear a compression sleeve. I guess it depends on how many were removed. Hugs, Lili

hummm, does hot MINERAL water and mud count????
ROFL!!! TOO late!!!

I must say, that when my private Turk (mmmmm...big, strong, and swarthy) was giving me a bath...and scrubbing me down, I was sure that he wasn't too rough on THAT arm...

Hugs, Kathi

My experience with lymphodema
Hi Lynn,
I had a modified radical mastectomy on my right side with all of my axillary nodes removed, plus radiation to that area and to my supraclavicular nodes. So I, too, was at high risk for lymphadema. And I got it. But it's mild and easily controlled with good hygiene, exercises, manual drainage and my garments. In fact, there are some days that I don't have any apparent swelling.

My physical therapist gave me some good advice: Live your life as you normally would. The only risks for lymphadema you can't control are the # of nodes removed and radiation. The risks you can control are body weight and good skin hygiene. But even with those risks, doctors never know who will get it and who won't. Rather than walking on eggshells and waiting for it to happen, just live as you would. Yes, take extra precautions with skin care, but don't live in fear of it. Lynn, you have everything you need should the lymphadema present itself, which means that if it does, you are on the right track to manage it successfully.

It took me awhile to let the fear go. I remember we were eating at Fazoli's and I was bringing the food to the table. As I started to unload the tray, the tray started tilting and all of the hot spaghetti and fetuccini slid off and onto my right hand. I was so scared and shocked that I couldn't move (and the hot stuff just stayed on my hand). I finally ran to the bathroom to run my hand under some water. It was very red and I was scared. When I returned to the table, my hand was pretty normal but my fear was still so strong and so real. I told my husband about my fear. He said, "Honey, you're going to burn yourself eventually. It's going to happen. You can't avoid it. That's just life. Instead of fearing it, let's just live our life. And 'when' it happens (not 'if'), then we'll face it." (He's so wise!)

Yes, I have lymphedema. But it's manageable. In the last few months I've played 4 softball games in one day (and I was the pitcher...right-handed), swam, lifted patients at work, thrown the football with my sons, ridden on rollercoaster, flown in a plane...... my lymphodema has not gotten any worse.

I'm living my life without anymore fear. It didn't happen right away. It was a choice I had to make...... and sometimes, on some days, I have to re-make that choice.

Blessings to you this Christmas.....Peace (not fear) on Earth and in your heart...
Chelle

lynn1950 said:

Exercises, garment, massage
Chellebug- Thanks so much for your comments. I'm wondering. Do you exercise, wear your sleeve, and do the manual drainage massage everyday? I finished radiation last fall and have a tiny bit of swelling still. I don't know if it will ever go away, if it is still a response to the trauma of the past nine months.

I'm still reeling from the whole experience and just trying anti-depressants and trying to wean myself off of anxiety meds, so maybe where I am on this journey colors my perception of everything. How long have you been a survivor?

Happy Holidays to you. Lynn

How Often?
I just started anti-depressants (Effexor) just before Thanksgiving. And I switched my Tamoxifen dosage to 2 - 10mg tablets/day. Those two things really helped me with my numbness and my agitation. I was diagnosed in November of '07, had chemo for 12 weeks straight from Jan-March, had 3 breast surgeries (the last one being a double mastectomy in April '08), finished radiation in July '08, and I just had my last Herceptin treatment yesterday. I did really well emotionally for the first 11 months. Now, I'm not saying I didn't cry or worry or get upset, but for the most part I had an inner peace (that was not my own). I don't know if it was because I was nearing the end of my treatment (or that I was still in treatment a year after diagnosis), but I knew I had to do something about my mood changes. They weren't getting any better (and I think much of that was from Tamoxifen).

I'm not the most consistent person, but here's what I've been doing with exercise, sleeves, and drainage:

Exercises: I usually try to do my lymph exercises in the shower each morning. If I'm feeling swollen later in the day I may or may not repeat them. I started swimming about a month ago and that has really helped with my chest wall and axilla pain on the right side.

Sleeve: I wear my arm sleeve 90% of the time during the day. I always wear it at work (but that's only 1-2 days/month), or if I'm doing house cleaning, or my exercises (but not in the shower and not when I'm swimming ). Sometimes, I don't really feel swollen, but I do have the area of numbness on my right side and in my axilla and inner arm. When I wear the sleeve, my arm just feels more normal. I rarely ever wear my hand sleeve. Most of my swelling is from my elbow to my shoulder and in my axilla and right chest wall. I have a friend who will wear her sleeve for several months and then not wear her sleeve for several months. She's a 5+ year survivor. So, I'm hoping this will be something you and I can look forward to.

Manual Drainage: Not as often as I should. Maybe 3-4 times each week. But if I have a day where the swelling is more noticable then I do it 3-4x that day. When I do the drainage, I do it in the shower, when I'm laying down in bed at night, or when I'm watching TV (at night).

Before I had lymphodema, I obsessed about it. Would I get it? What would it be like? How would I cope? But then I got it in August. After a few months of being frustrated and upset about having 'got' it, I've finally just accepted it. As much as I HATE the phrase 'your new normal,' I've just had to accept this as my new normal. And, like you, I'm hoping that if I manage it well right now, then eventually it won't be something I have to manage every day.

Here's a question: When someone asks how long have you been a survivor, what date do you use? Is it from the date you were diagnosed or the date you ended treatment? You could say I'm either a thirteen month or a one day survivor depending on how that question is answered.

Something I discovered: When I wear my breast prostheses (self-sticking) attached to my skin, my lymphodema improves. BUT, my right chest wall hurts for days afterward. If I tuck my prostheses into my mastectomy bra, I get no benefit for my lymphodema, but my chest wall feels much better. So right now, I'm opting for less pain and tucking them into my bra. I'm hoping after a few months of further healing from radiation, I can go back to self-sticking.

Hang in there, Lynn. I'm sure things will be colored differently once you get your medications worked out, too. Isn't crazy how our thoughts can fluctuate from day to day!

How about you? How often do you exercise, wear your sleeve and do the drainage?

Chelle

lynn1950 said:

My routine
Our stories and ways of handling the lymphodema are similar. I was diagnosed in February 08. But actually I felt something wrong a year earlier, but my feelings were discredited. So I guess I've been surviving with cancer for years. But that is not how it is counted officially, and I'm not sure what is politically correct.

I had a bilateral mastectomy in early April of 08, followed by 8 sessions dense dose chemo during the summer. Radiation started the end of August and I didn't start losing that "inner peace" until about 3 weeks before the end of radiation. Everyone thought I was so strong! I tried to cope, but went straight down the rabbit hole and ended up being hospitalized 3 days for panic attacks about a month ago. I started seeing a counselor and she has been great. I had never cried about my cancer - couldn't, but she helped me to cry. In addition, I saw a psychiatrist a couple of weeks ago and she diagnosed anxiety and depression...well, duh. She said the dose of effexor my regular doctor had me on was not therapeutic and I am in the process of doubling it; it takes a while.

I don't wear a bra, so I don't know much about a prosthesis, or how they work. I had a bilateral mastectomy.

I feel so inspired by the information you have shared with me. You are a Christmas present! Since radiation, I have always had very mild swelling in my lower left forearm. I do manual drainage massage every day - like you, in the shower, or in bed. I did stretching exerises for 8 weeks and pretty much have full range of motion. Once I stopped the range of motion stretching, I never started a lymphedema exercise routine (one more thing!), but probably I should. Occasionally I walk my hand up the wall. I like to swim laps at our local hot spring pool and that helps me too. I think of that as good lymphedema exercise, but maybe I'm fooling myself. I've been swimming about twice a week and wish I could swim more often. I also do a mild form of yoga using a CD by Jon Kabat-Zinn. I listen to his meditation CD as well.

I have to say that I am really struggling with this "new normal" and try to have faith that I will be able to come to terms with it.

Lymphedema...
Hi, Not sure if I have got this or not.. My doctor knows very little about it and I can't talk to my Onc, My surgeon is golfing in the Bahamas for christmas, the first appointment I can get is mid-january. I have lumpy bits inside the arm around the elbow region, My arm hurts so much that somedays I am totally useless....Right down to the base of my thumb. Is this IT? Lower arm hurts too much to even touch and I can't straighten that arm...It is slightly swollen. What excersises? What Massages? Any help VERY much appreciated.........Happy Christmas to all.... Love Julia

tasha_111 said:

Lymphedema...
Hi, Not sure if I have got this or not.. My doctor knows very little about it and I can't talk to my Onc, My surgeon is golfing in the Bahamas for christmas, the first appointment I can get is mid-january. I have lumpy bits inside the arm around the elbow region, My arm hurts so much that somedays I am totally useless....Right down to the base of my thumb. Is this IT? Lower arm hurts too much to even touch and I can't straighten that arm...It is slightly swollen. What excersises? What Massages? Any help VERY much appreciated.........Happy Christmas to all.... Love Julia

Julia, I think it would be a
Julia, I think it would be a good idea to get a referal to a physical therapist trained in lymphadema. They can assess you for lymphadema and teach you the exercises, the massages and order garments if you need them.

At the onset of lymphedema, women often complain of their affected arm feeling 'heavy.' The pain could be from the lymphadema or it could be some residual neuropathy from your surgery....or both. If you had any radiation, it could also be from your pec muscle in your chest compressing on your arteries, veins, nerves that run into your arm.

I highly recommend you see a PT, though. They could address all of those things. Initiallly she worked on my range of motion and my lymphadema. Now, I see her every 3-4 weeks. She works out some of the scartissue adhesions on the side that I had a mastectomy and radiation. Did you know that there are changes going on in your radiated area for up to 3-8 months after radiation ended?

I realize none of this helps you at this moment. While you're waiting for your appointment, it's a good idea to keep moving your arm as much as you can. If you stop moving it, it'll just get tighter and tighter.

Got to run........Time for Christmas Eve service........

Chelle

tasha_111 said:

lymphedema
Thank you ladies... Nobody here wants to know. Thank you. J xxxxx

Getting through it on your own...
Oh, JXXXX. Getting through it on your own is a hard burden to bear. It sounds like you haven't had much compassion or help from your surgeon or onc. I will tell you one thing about PT's. They are very compassionate people. They spend an enormous amount of time with you compared to your surgeon and onc. They can often get to the issues involving your symptoms and help to alleviate much of your pain.....or find better ways of coping with it. If you haven't yet, I would call your doctor's office, tell them you want a referral to a physical therapist for lymphadema. If you can't pick up the referral, then have them mail it to you. Start searching for a lymphadema specialist in your area and make an appointment. Let us know what happens!
Chelle