TRIPLE POSITIVE GROUP
Comments
-
Nance,
You asked about node removal. At the time I knew if I had even a single positive node, I was going to get rads to the axilla. So, I didn't see the point of removing nodes, and then radiating as well. That seemed like over-kill to me. So I agreed to a SN only, used a study that came out, or was presented 9/2010 that basically said rads to the axilla is as effective as removal in the absence of gross disease with a huge decrease in the chance for LE.
Jack,
I'm so sorry to read abotu the LE. I agree you should absolutely follow your LE specialist's advice. However, if she is telling you no weights ever, you may want to get a second opinion. The lymphatic system doesn't have an engine (like the heart) to pump fluid through the lymph channels. The only thing that moves lymph fluid is MOVEMENT of muscles. If you let your muscles deteriorate (which they do much faster in menopause) they won't be moving lymphatic fluid the way they should.
I encourage you to get a second opinion. The LE specialists around here (for the most part) really encourage weight training, and can even quote the latest studies saying it is imperative to keep the lymphatic system healthy. You can start with no weights at all...just learning proper form. They encourage using a can of beans in each hand...lol once you have the form down..
Having said that, of course your case and your specialist is unique to you.
Good luck! And if I come across the LE weight training info I will post it
0 -
a can of beans is 1lb. Cheaper than buying a 1lb weight… and I'll admit I used 2 cans of dark red kidney beans at first.
0 -
Haha...Lago, you are so funny! I've used a can of beans or two in my time as well
Right after surgery when I had the ok to get my heart rate up but no pulling or real lifting....I did my cross trainer for an hour and held a can of beans in each hand. I held my arms still, hand with beans just beneath each breast, elbows way out, for an hour. By the time I was done, I could feel it!0 -
Well my thought was I didn't plan on using 1lbs weights for very long so why waste money. I was so tired of spending money on cancer shit that I only had to use for a very short period of time… and never plan to have to use again!
Ironcially I just came across this stupid thing that my PT had me use after BMX. My doors are all floor to ceiling so I had to rig it with another strap so it would be long enough. Also we only have a few doors in my place… came down to only one option and there is not TV in that room. BORING
0 -
Here's a fascinating study...they did some kind of DNA test of saliva to help predict which patients would get what side effects from chemo. Just goes to show why we all get different side effects with the same drugs. Personalized medicine really is developing!
Six side effects were studied: nausea and vomiting, diarrhea, oral mucositis, fatigue, neuropathy, and cognitive dysfunction.
"We can now identify patients at risk for these side effects before they ever receive chemotherapy," Lee Schwartzberg, MD, the senior partner and medical director of The West Clinic, and principal investigator of the study, said in a statement. "This allows us to customize our chemotherapy regimens and side-effect control interventions in a patient-centered care paradigm. These side effects can impair function, create inefficiencies in medical practice, and are costly to patients and payers."0 -
ha ha ha kayb! Sorry about the link - thanks for letting others know how to access it. It works for me, but perhaps I am already logged into that site or something.
0 -
Dance/Kayb....the link worked for me.
Ashla: I have 2 cookbooks that I highly recommend for your beans/lentils and incorporating spices. They're not "anti-cancer" per se, but vegan and I use them both a lot!
The Happy Herbivore (Lindsay S. Nixon)
Everyday Happy Herbivore (Lindsay S. Nixon)
I have a couple of other good books, Vegan Soul Kitchen and Vegan Slow Cooking.....but the 2 Happy Herbivore are the BEST!
0 -
Thx Chachamom....gonna get them.
0 -
Oh Kayb read like I do I read therapist as the rapist at first. oooo my eyes.
0 -
Here it is. The latest extremely comprehensive "
Nutrition and physical activity guidelines for cancer survivors"
from the American Cancer Society..Just packed with valuable information
0 -
Thanks Ashla!
0 -
Hey Dance - that's amazing about testing saliva for chemo side effects. Still battling some of mine unfortunately, but managed to enjoy Canadian Thanksgiving:) Happy Thanksgiving to one and all - living in gratitude vjm xoxo
0 -
soltantio, I've had to wear a 24 hour event monitor before. When I was first diagnosed with svt 30 years ago I wore one for 2 weeks. It's not that bad. Just kind of annoying to carry it around and I had it during summer and sometimes I would have to retape the electrodes. They maybe different now, but I had to keep a diary of what I was doing and if I had an episode I would push the button to record. The 24 hour one I had to call in and they would record off of my monitor. It's been a while since I had to do that. I hope your palpitations don't return, but if they do, I hope it is something easy to correct.
0 -
I know you will stay on top of it Solt. My cousin's Herceptin heart issues started the same way.....BE VIGILANT!
0 -
I'm still in the chemo stage (neo-adjuvent) so surgery is a long way off for me (end of Feb/beginning of March) but this talk about node removal is interesting! The chemo has been working gangbusters - I am getting weekly Taxol and Herceptin before moving on to four rounds of FEC and Herceptin. After three treatments the lump in my lymph node is gone and the tumour in my LB was down by 2cm. So for surgery, what kind of things should I be asking the surgeon for my lymph node? If the neo-adjuvent therapy does its job, the cancer should be gone, no? And I am scheduled for radiation following surgery, too. Before starting chemo, I had a preliminary meeting with the surgeon and even though it is his hope that the chemo will take out the cancer in the lymph node, he still wants to remove the axilla node. And by the way, what exactly does that mean? How many nodes will that be?
0 -
Forever - I just wanted to say that it's wonderful to read that the chemo is working so well!! That must be great to be able to feel and see results.0
-
Forever I agree you are getting great response. I would ask your BS how many levels of nodes he is planning on removing… but I would also get a hold of the latest study that says if you're getting rads then no additional benefit to removing them… just higher risk of LE.
But remember, regardless of what the study says every case is different and there may be a reason in your case they need to be removed. A friend of mine had to get level 1 removed because she couldn't do a SNB… had a breast reduction years ago. BTW she like me had no nodal involvement. Unlike me she still has no LE and just finished chemo.
0 -
They are now experimenting with lymph node transplants! Moving them from one area of the body to others and it WORKS!
0 -
Great news forever!
Lago, are you one of the ACS volunteers who calls newly dx'd ladies to offer assistance?0 -
Thank you all! It is such a powerful feeling to physically see this tumour going down in size. This week (treatment #5) I am having trouble even finding the lump in my breast!
Interesting side note: after my third child was born (he's 17 months old now) I could never get my wedding ring on. I just chalked it up to how sometimes after pregnancy your hands and feet never go down in size. However, the unsettling question in the back of my mind was why could I get my rings on my right hand? Well, fast forward to getting the cancer diganosis in my left breast and starting chemo blah blah blah what I find intersting is that also after three treatments (after the lump in my lymph node went away), I can now get my wedding ring on and off my left hand.
0 -
Thanks for the article on nutrition and exercise ashla. I have only had time to skim read it so far but will look at it in detail. I feel better in myself when I am exercising and eating healthily. I feel I'm doing all I can to prevent a reoccurence.
Any further info on the lymph node transplant?
0 -
Jackboo....
I can't link on my device but if you google ABC news 4( that's our local NYC news. ) lymph node transplants you may get a link that includes a video. I should have written down the hospital where it was being done. Likely Memorial Sloan Kettering. I'll keep my eyes and ears open and lt everyone know.0 -
Dr Constance Chen in NY...they are recruiting people for a study. It is still controversial but so are many great innovations.
0 -
Forever - That's a very interesting observation about the rings.0
-
Ashla I don't do that for ACS or Immerman's Angels. To be honest this site keeps me pretty busy with ladies here. Just last week I spoke with 3 ladies on the phone, 3 ladies PMed me and 2 texted me! Also don't forget I also post here. Last week was a busy week. At some point I might though. Eventually I will wind down on this site… when I get that job.
About lymph node transfer. Dr. Marga has been doing it for years… and in Europe even longer. It's really for the most severe cases. One of the places they take it is from the leg/inner thigh. I know my mom & her uncle both have/had lymphedema in their legs. Now I have low stage LE but if I didn't I don't know if I would be willing to remove nodes from my leg. I would worry about having it in 2 places.
0 -
Well Lago..I and hundreds of women are here to tell you how grateful we are that you are RIGHT HERE at BC.org forums. Imho you have likely done far more good on a larger scale right here.
It's a shame that we can't meet in person . Maybe someday.
That's bad grammer but gotta go !0 -
Foreverchanged72612 - the study everyone is referring to that concluded no added benefit to axilla dissection for women with less than 3 nodes positive is the Z11 study.
Look it up online and ask your drs about it because it really may not be necessary to put yourself at high risk of LE by having the complete axillary lymph node dissection (ALND) where they take the entire pad with lymph nodes from your underarm.
I knew about the study and refused the ALND and am quite comfortable with that decision.
Jenn0 -
Jennt - How are you feeling? Everything healing up?0
-
hi all
hope everyone had a nice weekend...
so i'm 6 DAYS to surgery...starting to panic somewhat. I am going out today in search of the button front pj's, which are not as easy to find as you would imagine. I laughed when i saw a pair with pink ribbons printed all over them. How would i look after a bmsx surgery wearing those?! what a statement that would make
so if i am understanding correctly, on my prophy side i run the risk of LE? is this b/c they may take some nodes when they are removing the breast tissue? can someone explain
0 -
jenn did you get your final path back yet? how are you feeling?
0
