TRIPLE POSITIVE GROUP
Comments
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Ang reat news---congrats.
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CindyLooWho I like you and many others:
healthy weight
healthy diet
exercise
little to no alcoholBut remember this is to reduce your risk, not eliminate it. It didn't work for us but it may work for someone else.
I can't fault your PS or ACS for promoting this BUT at the presentation yesterday the VP of health imitative stated the same thing except the part about having kids & breast feeding before 30. Might have something to do with the VP being a woman and knowing how offensive that is. Also not having kids or having them after 30 only slightly increases your risk. They aren't completely sure about the breast feeding either. linky
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Yeah I get the reduction of risk part, that's my point...mine musta been pretty high.
I just can't get my head around why. I'm still pretty angry, can ya tell?0 -
CindyLooWho there are many switches to get cancer going. I figured 2 of mine were stress and city air. I love the city. I love living in my high rise. I love public transportation. Stress… hate that
BTW I love Dr. Suess. I almost rented an apartment on Mulberry St. (yes THE Mulberry St.). I also saw his studio in MA.
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cami - Love that let's roll pic!!0
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Cindy most everybody says why, so I think it's natural. but there is no reasoning with cancer it just is and goes where it wants. And being angry is anither feeling too. There are so many emotions involved from day 1 til---I don't know yet LOL--we just do the best we can with what has happened to us.
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Sol at least the electrolytes are a good sign. I hope everything goes super well and let us know right away. OK.
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Just chiming in on the LE discussion. Following my recent appointment: I have mild LE in my upper arm 18 months post surgery. I have a sleeve fitting on 17th Oct. I am pretty sure my attempts to exercise (and lift low weights ) has brought it on so feeling pretty devastated by that. Dont think my fitness instructor had a clue. The advice here in UK is no weights, strain on arm whatsoever. Is this different to US advice.
For any fellow LE sufferers: my arm is 10% bigger and I was on the cusp of needing to wear a sleeve all day. Anyone in a similar position? My arm doesnt seem to be getting worse. Im very reluctant to commit to this. e.g in the summer or on holiday.
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JB I'm sorry for u with all this--mine isn't extremely bad and I do cheat, when I go out or holidays--when I didn't cheat so many questions and I'd make up stupid stuff--like I fell on m ski trip or roller blading. Well that's me--Who want to go thru saying it and sometimes people don't know what it is, and comes from, then u'r involved in some medical jargon, so I do cheat--I'm not advocating that, but I'm just admitting it. LOL
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Hi Camillegal
Thanks for replying: I'm living in the land of denial at the moment. I know I'm going to cheat and I know I'm going to end up being rude if complete strangers question me constantly. My husband had a crush injury and his arm is badly scarred. I remember one day in the supermarket him saying it was caused by a shark attack! Sick, but funny at the time...
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jackboo my LE is very minor but I wear mine all day. Actually right now we're trying for just till 5 or 6pm but I forget to take it off. I don't need my glove anymore because I don't swell in my fingers but I still have one just in case.
Research has shown that exercise is actually good for LE. You just have to start slowly. I do upper body strength training, granted not like TonLee. I am currently using 7 & 10lb weights, 3 sets of 10 reps. I started with 2 & 3lb and 1 set. I'm actually more than I did pre-diagnosis. I wasn't up to the 10lb yet. My LE has pretty much remained consistent at this point but I do see my LE MD next month. Last time both my arms got a litter bigger. He says its because I put on 5lbs and maybe because of building muscle. I know I don't gain weight above the belly button. It's all larger muscle. So far no LE in the right arm.
I have been wearing my sleeve through 2 summers now. It can be hot but I got used to it. Ideally with LE you dont' want to be in hot humid conditions for long periods of time anyway.
Most people don't notice my sleeve. I wear a bracelet to cover the wrist. The color is pretty good. I wear Medi 95 (Mediven). I think Jobst also has a choice of "flesh" colors to choose from.
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Ang- congratulations! Great news. :-)
Jackboo- my PT lymph therapist says like Lago said. Start slowly on weights and something that if you don't, the muscle tearing and repairing can set off lymphadema. So by starting slow and low on weights, you don't have as much stress on the muscle.0 -
ang - great news! my mammo and mri came out clean aswell (had it a month ago!)
so this is our thanksgiving weekend here in Canada I was just thinking how last year I was in the hell of chemo durning the holidays. This year I am hosting dinner for 18 people...so for the newbies still in active treatment, life does get back to a 'new ' normal
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Uuuggghhhh. Does all of this mean that I am doomed to get LE? My BMX is nov 6 and my PS said I should be able to lift my 35 lb 1 yr old baby after 6 weeks. He is a chunk! It just seems so soon to lift that kind of weight.
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Helpful info on LE- thank you. I thought I had started off slowly with 2kg weights, building up to 5kg. However, I was also using cross trainer and row machine for cardio and my LE nurse feels that could have been a contributing factor.
I really, really did not gel with this woman and it made the whole dx far worse for me. As soon as I said that I read alot she was asking which sites etc. She directed me to 2 of her choice and questioned me about lifestyle. Then she went on about the clinic manager being on long term sick and that her increased workload was getting too much. Yes, I get it: the NHS is struggling but I am the patient- a young woman who has just been given a very limiting set of lifestyle directions, so please forgive me for not being very sympathetic.
No weights-ever
Cardio machines but only wearing a sleeve
No sunbathing
Very high chance of celluitis
Must carry insect bite cream around at all times
No trauma on arm (heavy bags etc)
Perhaps I will feel more positive on 17th Oct, but I doubt it. Ive come away not even really knowing exactly why this sleeve is going to help my arm. Grrr...........
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Jen404- not necessarily. I had my bmx July 30th, with 2 sentinel nodes removed. Then more removed on sept. 11th. Just have to take it slow.
Lago- isnt it only if lymph nodes are removed? But my lymph PT specialist says for me to start with small wts like Lago said. And build up. I think most important thing is to listen to your lymphadema specialist. My right side was prophylactic and I lift more with that side than my left side with the lymph nodes removed.0 -
Jennifer: no its not a certainty. I think I have brought mine on though. I was pretty heavy with it this Summer. However, I could have developed it anyway. My friend started with it during chemo.
Sorry if I worried you.
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Jennifer404, I believe the more lymph nodes taken, the greater the LE risk. I had 4 sentinel nodes taken and am ok so far. Doing the exercises they show you in the hospital after surgery helps also. I was nervous about flying over the summer, even on a short trip, but my BS so not a risk in my case - just to get up and move around a bit. I don't really know much, since I don't have it, but I wanted to let you know it's not a given that you will get it.
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You can get lymphedema just getting your breasts removed. There are lymph nodes there too. Yes some women do get trunkal lymphedema.
I also did cardio as soon as I was allowed to after surgery. Mostly walking but eventually power walking. I do remember my arm feeling "heavy". If you get this "heavy" feeling when you do anything… stop doing it for a while.
I've had LE for almost 2 years now. I have had some cuts but didn't even realize. I have had no cellulitis but I do keep topical antibiotic, bandaids and antibacterial cleaner in my purse (sample sizes). I'm sure I've had a mosquito bite but still no problems. I wear sleeves on both my arms when doing strength training and flying because I do feel the heaviness in the other arm (4 nodes) when I don't.
If you haven't checked out this site I recommend it: http://www.stepup-speakout.org
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Thank you everyone--- I hope a yearly mammo is enough I don't know going to talk to my Doctor to find out.
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Thanks Lago. That was going to be my next question. I didn't realize I was susceptible in my prophylactic breast. I will be more careful. My PT has been so focused on my left side because of my recent ALND. I do tend to not be as mindful on that side. My left side still feels heavy but does dissipate as day goes on. Can that be from sleeping on my back and because the surgery was so recent?
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Reading the LE discussion. I hate to say it, but I think I might have a slight case of LE in the port arm or it could be from the Arimidex. My hand (and area near the elbow) swell up and my ring is so tight. I have always worried about the surgery arm but it is fine and I've had some cuts and even a basal removed from that arm recently with around 15 stitches. I'll ask my onc at my 3 my appt in a few weeks.
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Arlene do get it checked out but although not super common people do get fluid retention with Anastrozole. I have it but mostly in my legs and tummy.
Ms. Tori, Highly unlikely you will get LE in the profy side but it can happen. I assume you didn't get any nodes on that side.
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Jackboo - When I had the flare of LE during and after rads (developed cording) I had to quit weights for a while then start out very slowly with 1 pound weights. It was so slow to build up again but my LE therapist said I had to wear my sleeve/gauntlet while exercising. After about a year my rad onc thought that the LE was from rads and I could give it a try without the sleeve. That was about 1 year ago. I still get LE in my inner elbow, I can see it and I suspect that is the area that was drained by the lymph nodes that were removed. I do the LE massage and that works for me. I am up to 7 pounds again and am really enjoying it. Start very low like 1-2 pounds, do a couple weeks then just go up 1 pound, do a couple weeks. I know it seems like it isn't doing anything but you will get there slowly. also don't do the reps fast, the exercise brings the blood into the arms and I think you have to give our arms a little more time to drain since the drains are smaller now.0
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jennifer - if you have been lifting the baby all along I think you will be at less risk, but you will go through a period wih lifting restrictions - how long depends on your doc. You will have to work your way back up to his weight over a period of time. Are you going to have help for a while?
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Congrats Ang and Rozem on your clean mammos! My bs does every 6 mos for the first 2 years on the enemy boob.
I cannot tell you how many people have warned me about lymphedema from personal and family experience. They told me in no uncertain terms to be careful of lifting heavy objects. My mds, however, both gave me an enthusiastic go ahead for it all!0 -
Lago- no node removal on right side, only left. My right was prophylactic. Good to hear.. My port is going in right side. Thanks! :-) and I have been lifting up to 10 lbs with right side. Babying my left except what's allowed. Trying not to get that tight tendon thingy. Sorry, forgot what it's called.
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Re the turmeric....and all the other spices that seem to have health benefits. I'm trying to learn to cook with more spices anyway because we're eating more vegets , beans and lentils lately. If anyone has any good recipes...
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soltantio, I was hoping for an easy fix for you, too. Hopefully you're cardiologist will have encouraging news for you.
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More treatment options for advanced Her 2 pos bc. Nelfinavir...an HIV protease inhibitor has been shown effective.
It's amazing that all this is happening in Her 2 pos breast cancer. I'm very thankful.0
