TRIPLE POSITIVE GROUP

Elaine - the sleeve and gauntlet for flying is for both - preventive for those at risk, and necessary for those diagnosed with LE.  Don't wear a sleeve on a plane without hand protection too, otherwise you may force swelling down into your hand which can be hard to get rid of.  A medical device company can measure and order for you - or if you are fairly average sized you can order off the internet.  I found differences in manufacturers - initially I tried one brand and it was too tight - tried another brand in the same size and level of compression and it was much better.  Have you seen a certified PT?

Elaine - I would have a consult with the PT.  Even if it is a one-time thing the PT can give you good info about preventive care, flying, etc.  Mine was the one who indicated the compression level based on my situation, while the medical device company did the measuring for the sleeve.  It might also be helpful to have the PT's baseline measurement of your arm so if you have future swelling you will know by how much.

Elaine - the type of measurement that a LE certified PT does could be a bit different.  I had measurements taken at 1cm intervals all the way up my arm - LE can occur at any point along the arm, and even just be specific to that spot.  Is this how your baseline was done, or was it a more general measurement?

Specialk, I want to go where you went- they sound very thorough in measuring your arm. Mine was more like Elaine Thereses', and I just always wondered if that was good enough. Also, when I had gone back to LE'ist, when she did remeasure my arm after a year r so, she said good news! Your arm has pretty much maintained! I didn't have the heart to tell her that I hardly ever wear my sleeve anymore, and pretty much treat it like the other. I do take good care of scratches. But, my other arm has lost muscle and is somewhat scrawnier than it used to be. So, I think i actually have more LE than she thinks, if she would actually measure my other good arm again, which she refuses. It is really obvious in the pictures that Ruthbru took of the ladies who got together in san diego a few weeks back. i mean, I know it, but there is proof.

ElaineTherese wearing a sleeve if you don't have LE is controversial but I do on my non LE arm. linky

My first 2 sleeves were measured by a medical device company. They felt awful. Once I developed LE I went to PT. Found out that I needed a long sleeve. Medical device person sold me what they had on the shelf instead of ordering me a long.

Hi All, just hoping to get some encouraging feedback. My Mom is 3 1/2 years cancer survivor with triple positive IDC Stage 1. Last week she went for routine blood work with her PCP and her liver enzymes came back high. Her AST was 190 and ALT was 489. Her ALP was just over normal at 150. All of her other bloodwork was fine. Her PCP wanted her to go for a cat scan, but she had the results forwarded to her Oncologist and he recommended an ultrasound, which she had on Friday. We are now anxiously awaiting the results.

She is currently taking Arimidex, which she has been on since Feb. she was also on it over a year ago, but had switched to Aromisn. Plus she doubled up on her arthritic medication due to the joint pain caused by Arimidix. She also had an ultrasound of her liver done back in October and it only showed a fatty liver. Do you think it can just be all of this medication skewing her liver enzymes?

Hi all, I've been too sick to post often. Still have very horrible nausea every day from one treatment to the next. Am eating very little and when I do I end up vomiting and get diarrhea also. Everything tastes bad. I know I'm dehydrated. But can't seem to drink enough. I have 3 different anti-nausea drugs, none really help enough so I can eat or drink. Loosing weight too fast.

I hate being sick ALL THE TIME!

Debiann - I had to laugh when I read your post (previous to your last one)....I too thought that I would for sure GO from a heart attack some day.  All my family members who are no longer with us have died from heart attacks and I've been seeing a cardiologist for years for irregular heartbeat, left bundle branch block and most recently high blood pressure....I was convinced that my future had a heart attack in it.  When I was diagnosed with B/C, I told my doctor, "Well, at least now I have options." He and the nurse laughed but I think they thought I was nuts.

the choice is not ours, I say that all the time. I had liver issues prior to BC, very high, mine turned out to be diet, which I got under control. If the arimadex can make it high again, what are your options for food? My taste is just coming back for normal almost. I was terrible at hydrating so I know that played a part in my whole side effects problem . I am getting better at it and hope the arimadex does not make things worse. Hang in there girls.

Best news Laura!

I had the taxol and herceptin cocktail. my tumor was .7cm or 7mm no nodes, grade 2 and I had two different opinions from UCSF where I was, and Cedar Sinai in LA where I had been treated 25 years ago. The LA guys said I didn't need chemo, the UCSF guys said 12 wks of taxol/herceptin and then herceptin alone every three weeks for the rest of the year. It was very confusing as I fell into the "grey area" as they call it of tumors less than 1 cm but greater than .5 cm . The UCSF guys said they didn't want to do too much, but right after I was diagnosed the Dana Farber study came out that recommended T/H for even very small tumors so I went with that, even though the Cedars guys still said they didn't think I had to do anything but take a hormonal pill and I'd be just fine. Having gone through this once before with TN breast cancer in my 30's I went with the short course chemo, as I was pretty paranoid by that time. I cold capped, didn't lose my hair (on my head). I was pissed off about having to do the T/H at the time, since I'd already done chemo once 25 years ago but figured since I was already a two time loser/winner (I'm still here) I'd go with UCSF. I finished chemo in mid April. Had I not been through this once already I might have made a different decision.

Greta,

An oncologist friend of mine in Japan told me they are doing or about to do some trials on that protocol over there. So far they seem to think H works better when paired with some form of chemo...for now.My HER2 was 3+ also

Greta some drugs work better in combinations with others. They have found some chemos work better in combination with other chemos too.

molly,

yes, and that's also why some women I know with larger HER2+ tumors and no nodes are also being given the perjeta/H combo. The thing they're really looking at says my MO is the length of time women with , smaller than 1cm tumors need to take Herceptin. There is some thought that a full year is likely "overkill" as my Dr says but there have been very few studies done on that so far so 1 yr it is.