TRIPLE POSITIVE GROUP

Sue....congrats on the new Grandbaby!

Oh and I am glad you jennifer and lago mentioned the ACS. They helped me so much with information, my first wig etc.

susie - yay for the new grandchild!  I am sure you miss your children and grands - I don't get to see my son often but will be spending a week with him, starting Sunday, when I fly up for the start of my Her2+ vaccine trial.

I know this has been asked on here somewhere but can't find it - I don't have lymphedema, but did have a SNB last august. Im taking a short plane trip (less than 2 hours each way). Is a sleeve needed to prevent Lymphedema even on such a short trip? I will ask my BS on Monday, but if its needed, is it pretty quick to get one? My trip is 8-1. Thanks!

I was told under (I think it was 12) nodes taken out it should not be an issue. Any over that you should have a fitted sleeve for flights over 3 hours.

This was told to me at my PT appointment at the Mayo when they were discussing lymphodema. If you already have it then you should wear one on the flight regardless.

newsflash ladies - there are those among us on this site who only had a SNB who now have lymphedema.  It does not matter how many nodes, whether you are thin or not, what kind of surgery you had, etc. - you are at risk for LE if you had a single node out.  Here is the air travel precaution sheet from Step Up, Speak Out, as well as the general precautions:

http://www.stepup-speakout.org/Controversial%20Studies%20on%20Compression%20Garments%20when%20Flying.htm

http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

It is doubtful that you could get a properly fitted sleeve in a short period of time.  Mine required a written prescription and instructions from my LE PT, I had to be measured, sleeves/gauntlets ordered.  It took a couple of weeks.  If you could find a medical device company that has sleeves in stock that fit you properly and can be obtained without a prescription it might be possible - but also be warned - my two sleeves and gauntlets were $250, and they are not custom.

Just catching up with posts as I've been off line for a couple of days.

Welcome Jennifer.  As already affirmed....this group of ladies are great support, smart AND compassionate.

Lago you ALWAYS make me laugh out loud!  I'm going to practice the "4.5 days" line to keep in my arsenol....don't think I have the guts to do the "time's up" drop....although I LAUGH out loud everytime I imagine it!

As most of you know, I was not given an option of chemo/Herceptin due to my 3mm IDC (and "old" age of 57)....so I'm just on Tamoxifen right now.....I've noticed my nails and hair have been thrashed and started taking Biotin and recently started BioSil.  Today I've noticed that my thumb nails are lifting (the whites are jagged and moving up the nail bed).  Could this be the Tamoxifen?  or????

Wow - I never worried about flying before. I guess the 24 hour trip to the UK last year proved it wasn't a problem for me. I don't remember any discomfort at all. Wish I'd known about it before though.

Don't they use pregnant mare's urine to make Premarin????

Megs986, first time i was her2nue+++, my SO ordered a FISH which turned out way below the positive value, so he told me i was now her2 neg. Then the MO ordered a repeat her2 testing, which again yielded +++. I am now being treated as her2 positive. For me, better safe than sorry. Tho i dont know for sure which is.

Hi Tonlee

Thanks for advice. I am definitely starting slowly. I am concentrating on cv machines first. I used to do one hour of cv interval training, but having just started back im struggling to make 15!

I hope your swap goes ok.



Liz

jackboo I have LE and do strength training although not like Tonlee. You need to work up gradually  like Tonlee says. If you notice any heaviness, fullness or swelling then stop and give your arm a rest for a day. Studies have shown that exercise/strength training is actually a good thing for LE as long as you don't rush into it.
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---Learn about exercise and lymphedema:
Exercise is a key component of lymphedema therapy and all patients are encouraged to exercise. Patients with lymphedema or at risk for it, should not exercise their upper extremities to the point of fatigue and need to monitor their arms for swelling or discomfort after exercise. There are far too many cases of anecdotal reports of women developing lymphedema in exercise programs designed for cancer survivors, using exercise trainers who are unaware of lymphedema precautions or even with standard physical therapy. Resistive exercise, despite recent studies, can pose a risk to women both with lymphedema and at risk for it. From the NLN position paper on exercise-http://www.lymphnet.org/pdfDocs/nlnexercise.pdf:

"Studies: Resistive exercise has been formally studied in "at risk" individuals, and when begun at a low level and increased gradually, has not been found to trigger or worsen lymphedema. An isolated study in lymphedema patients suggests that resistive exercise, in the absence of compression, may lead to increased lymph accumulation and eventually worsen limb swelling. Potential Benefits: Resistive exercise may enhance lymph flow and prevent limb swelling from muscle overuse. Potential Risks: Strength training increases local blood flow and metabolic waste production. These effects increase the demand on the lymphatic system, potentially triggering or worsening limb swelling."

In carefully selected patients, who participated in a specific exercise protocol, (PAL protocol), utilizing specially trained trainers and frequent assessment by trained lymphedema therapists, in this highly controlled setting, weight-lifting was shown to do little or no harm to patients with lymphedema and at risk patients, Schmitz et al-but weight-lifting does not cure nor definitively prevent lymphedema, and needs to be done slowly and carefully. Read the articles, not the press releases.

The initial article on weight lifting with the PAL protocol for women with lymphedema is a free article on pubmed: http://www.nejm.org/doi/full/10.1056/NEJMoa0810118

The second article reviewed use of the protocol with women "at risk" for lymphedema:
http://www.ncbi.nlm.nih.gov/pubmed/21148134

http://www.abstracts2view.com/sabcs10/view.php?nu=SABCS10L_9027

"Slowly progressive weight-lifting had no significant impact on arm swelling among breast cancer survivors with lymphedema, and resulted in a reduced incidence of lymphedema flares and improvement in symptoms. In breast cancer survivors at risk for lymphedema, a program of slowly progressive weight-lifting, compared with no intervention, did not result in increased incidence of lymphedema. In secondary analyses, women with 5+ nodes removed who did weight-lifting were less likely to experience increases in arm swelling."

Unfortunately, on the official University of Pennsylvania PAL site: http://www.penncancer.org/physical-activity-and-lymphedema This statement will be found: "Several key findings from the study include: 50% reduction of the likelihood of lymphedema worsening among women with lymphedema 70% reduction of the likelihood of arm swelling increases among women who had 5 or more lymph nodes removed"

Please know the facts and limitations of the study. Weight lifting does not cure or prevent lymphedema, and can precipitate it in some women. Read the NLN guidelines and counsel your patients with the facts.
source (2/3 down the page): linky

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Tonlee I never had LE swelling or increased after any of my surgeries. Actually the only swelling I did get was after my BMX but I didn't have LE then and it was bilateral arm swelling. Actually my entire upper torso was swollen. I did notice some heaviness during workouts later on but I believe I had already started chemo. It wasn't truly noticeable till after TX4

This is a link to a really nice overview of bc treatment from ucsf if you are interested

LINK

fluff - thanks! Sorry to hear about your son.  DH had arthroscopic knee surgery - didn't take him long to bouce back, hope the same for your DS.  I am a little nervous for tomorrow morning, partly because I have to drive in Washington, DC - I am currently typing this from the inflatable bed in the living room at the apartment of my DS!