Arimidex - Coping with the SE's
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I would have to get out my path report, it escapes my mind right now. Hmm, now just where did I put that binder? Kind of amazed there is a Dx number that ISN'T burned into my brain! LOL. It may be tomorrow before I can dig it out, sorry.
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My tumor was rated borderline. I had to decide whether to take herceptin or not. I chose not to and so far I'm OK. But, I really don't remember what constitutes a level that would definitely benefit from Herceptin.
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Be careful before you start lifting weights!
Ask your dr. about the risk of lymphedema or visit the lymphedema thread here on BCO and at least read the tips and signs and warnings from those ladies. You may get 100 women here who tell you they are FINE lifting weights and 100 there who tell you they got lymphedema...the gift that keeps on giving.We all need to remember that we are INDIVIDUALS. It's bad enough the DRS treat us with their cookie cutter treatments, but we are here to educate ourseleves and we know better.
Please be very careful before you start with any weights. Then, best of luck to you.
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Purple
Thanks for the tip. I promise to be careful. I'm being treated at a comprehensive breast center, and from what I've seen so far, they will be very good at helping me stay on top of things.
I love my MO. She's so easy to talk to, answers all my questions like she'd rather be talking to me than doing anything else. She's upbeat and positive, and has an excellent working relationship with my surgeon.
I've been reading all I can about LE and trying to get a headstart on preparing myself.
Blessings
Paula0 -
Notself, I had a 2 o the first test, they had to run a fish, and that was a definite positive.
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Mine was a 2 which my doctor called borderline. I'm older so I took the risk of not having Herceptin. So far the decision worked out. The most stress I've faced with cancer is all of the decisions we have to make. Sometimes one is just overwhelmed by the information and the benefit / risk analysis.
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Good, soteria!
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Here are a few of my thoughts about LE......
I had 11 lymph nodes removed, so this has always been an area of real concern and mindfulness for me. When I had my surgery, there was no one around here to go to for advice, so I did a lot of studying on my own. Ladies who have been around for awhile, feel free to skip, add your suggestions, or correct me if I'm wrong.
First, I think that whether or not you are prone to LE has mostly to do with how your lymph system handles trauma. I would say most cases (unless you are in a horrible accident or are doing really extreme activities) are neither through any virtue or fault of your own; just a matter of good or bad ‘luck'.
That being said, there are many ‘little' things that we can do that may reduce the risk of developing LE or minimize flares (these are for people with SNB too):
- No BP, IVs, needles, shots etc. in that arm....consider getting a medical ID bracelet (to wear when traveling anyway) check out www.creativemedicalid.com/ for beautiful jewelry type IDs
- Wear gloves when doing yard work, gardening etc.
- Wear sunscreen when out in the sun, bug spray when out with the bugs
- If you get a cut, scrap, bite...wash it with soap/water and slap on a bandage. If you see any sign of infection, get to the Dr. & on antibiotics ASAP
- Carry your purse on the other side, also be careful when hauling around anything heavy, switch arms when dragging luggage etc. (at first I carried everything on the 'good' side but wonder if that contributed to me getting a hernia, now I swtich off)
- No saunas (I also avoid manicures and massages)
- Keep a healthy weight
- Keep hydrated, limit alcohol
- Don't wear tight rings, watches, bracelets on that arm
- When exercising that arm; start slowly, take your time...build up weights slowly...don't skip levels...don't do too many reps in one session
- Mix up your exercises, don't work the same muscle groups every day, you may want to work with an experienced trainer (or PT) to help you construct a balanced program
- One thing I do want to add; after my surgery I was so scared to start doing upper body. Neither my surgeon nor my oncologist could give me any good solid advice, so I talked to my GP. What he said was that I DID want to exercise my upper body, that it was important to do so as it would actually build up the lymph system, and although, of course, I should be careful and notice if my arm felt heavy/swollen etc. that I shouldn't be afraid to have it feel a little sore...because anytime you exercise a part of your body that you haven't been using, of course, it will feel sore. That made sense to me, and gave me ‘permission' to get moving.
Hope this helps! Ruth
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Ruth
Thank you so much for these great tips! I think LE is probably my biggest concern. When I was leaving the breast center one day, I saw a lady who's left arm was at least twice as big as her right one. Because of what I've read on here, I assumed she has LE. She didn't appear to be wearing any special sleeve or anything, but as I walked away, I said a prayer for her. I hope she's better.
I walk with a cane. Left side. Do you think that would be a problem? Also, because I'm heavy and have a stiff left knee, I use my left arm to rise out of my chair. I'm trying to practice now, with not relying on my left arm so much, as that's the side of BC.
Blessings
Paula0 -
Ruth-thanks for the great info. I had snb, and while I have no LE I did see a PT who specialized in LE as one of my arms was initially swollen. I continue to do the exercises she gave me-massaging so drainage continues unimpeded. I also get manicures, she actually promoted it so as not to get hang nails which could get infected. She did say NO cutting cuticles only pushing them back. Of course I wear my compression sleeve whenever I fly.
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Paula, I just had my TE replaced on my left side. That was the side I used my cane with. So about a week prior to surgery, I switched arms and its working. Not that I haven't forgotten sometimes, but, I just change back as soon as I remember, or more usually when I get a twinge in my left ARM and it reminds me! LOL keep practicing you will ne very happy you are doing that. I found it hard for me as both knees are bad, and I had a BMX. But, that was over, and chemo is too. So all I have left is hhealing from this surgery and then the exchange. You will make it through.
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Thanks Ruth for the tips on lymphedema. I had 12 lymph nodes removed and have been concerned about swelling of my rt. arm, but so far I haven't had any. I was told not to do a lot of repetitive motions, but sometimes it can't be helped, as with clipping bushes, gardening, etc. I am careful not to have BP checks or blood draws on that arm. I think an ID bracelet is a great idea, just in case. I have been on anastrozole for 11weeks now with minimal side effects, and the leg cramps I was having at night have been resolved by placing 2 bars of ivory soap under the bottom sheet of my bed at night. I can't say why that works, but it certainly has for me.
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Moonflwr
Thanks for sharing that with me...I hate the darned cane, especially when trying to carry a purse too. I guess I'll just have to change my habits. It's amazing what we take for granted. Huh?
Idahogirl...that's odd, how the ivory soap works, but Ive heard of other weird home remedies like holding a warm wet tea bag on a wart. ( it really works) or putting Vicks vaporub on the bottom of your feet when you have a cold.
Blessings
Paula0 -
Ruth, I only had one node removed, I think with one everything should be ok with anything and no need for concern. Am I right on this? Ginger
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Paula, I was actually talking with my surgeon about knee replacement when I found I needed more imaging. So I have been limping, and hurting since Dec. I had to practice getting off a chair before my BMX, that was too hard, so we bought a lift chair, expensive, but so worth it. Also we needed a raised toilet seat. I used it after each surgery, it in now! LOL. That at least is cheap. LOL. Much love
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Moonflwr
We actually bought a raised toilet seat. DH is going to put down new tile, then install the commode before I have surgery which isn't til oct. I'm practicing getting out of my recliner, off the bed, out of the car etc without using my left hand, but I admit, I frequently forget. I have checked into lift chairs, but can't afford one at this time, however, my recliner sits a bit higher than usual so I think it will work.
You were first diagnosed 2 days before my 61st birthday which is nov.13.
It's amazing how much information I have received in the past month or so. Mostly on this site. I know more about BC than I ever thought I'd want or need to know. I thought BC was BC. Who knew there were so many different types, causes, and treatments? My head is spinning.
Blessings
Paula0 -
You can use your hand, indeed, you should!
LE is just something to be mindful of. Don't let it rule your life. And if it would unfortunately happen, I know many women who live very, very active lives even with LE.
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Thanks Ruth..I've read that you shouldn't raise your arms over your head for the first 2 weeks after surgery, so I've been trying to practice washing my hair and such without raising them. I found I can keep my elbows at my sides and still shampoo.
Is that a fact about raising the arms?
Blessings
Paula0 -
Soteria, I know you directed the question to Ruth about whether you should raise your arms over your head. I had a partial mastectomy a little over two years ago with 12 nodes removed. I was given exercises to do which included moving my arm in a wide circular motion and other movements. I was never told not to raise my arm over my head, and was able to shower and wash my hair without any problems. I hope that puts your mind at ease a little at least. Wishing you the best, Valene
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Idaho thanks, that's does put me at ease.
Ruth thanks for the website. I put it in my favorites for when it gets closer to surgery.
Blessings
Paula0 -
Ginger--I had ONE lymph node removed and got truncal lymphedema. Having only a few lymph nodes removed decreases the likelihood of getting lymphedema in the arm considerably, but truncal LE is on the rise now. If your breast starts hurting ask for a referral to a lymphedema trained physical or occupational therapist.
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Usually they let you do anything you are comfortable with, moving arms etc. What they don't want is using your arms to pull your whole body out of a chair, lifting a heavy box over your head, etc. They may be more restrictive the first couple weeks with TEs as there are muscle sutures involved, and suturing muscle tissue has some issues, sutures like to come out of muscle tissue as there isn't anything to really hold it in there, according to my PS.
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Thought I would update where I am at on AIs. Have been off for 1.5 weeks, feeling much better, appetite has returned, still a bit achey in the hips and of course my hands and elbows hurt but because I can now concentrate for more than a moment I have been knitting again. My hair is still coming out in handfuls but I feel confident it will slow and then stop in a few weeks.
Seeing the MO later this week to discuss where we go now. But the more looking I do I am thinking I may just not take anything. My Oncotype score was very low: 4. So my chance for this recurrance is low. I have a seroma in my( abdomen as a result of the TRAM and thus had a CT scan and it appears the visceral fat has decreased substantially, thanks to Wheat Belly. When I looked at Lifemath it appears AI would only add 1 year to my estimate life expectancy and really it is not worth the QL issues I was having.
Just last week I started thinking of this cancer as life threatening....dont ask why it took me so long....truly am the Queen of Denial.....so I will have to be more vigilant with my health but I really believe I have done all that I can to fight this cancer. I have been wanting my normal life back and have only recently realized that my life has been changed forever, just like my body. I have to concentrate on everyday life which I could not do while I was taking AI. I know there are other options but they are all toxic and I dont know why I would want to add them to my life.
Losing 40 lbs since surgery is good, my GP, PS and BS all said that if I would lose another 10 that would be enough. I would like to lose 40 more, hubby says no, just 10. We will see. Thank you all for the support you give to us all. It is wonderful.
PS I am thinking of going to my first BS support meeting tomorrow.
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Thanks for the website Ruth and thanks to you all for the great insight.
Question off subject, what is everyones view on flu shots? get them? or no? I never usually do, but I feel a little concerned about getting the flu this year and my immune system not being strong enough to fight it? Just asking for suggestions. Thanks. Ginger
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I het them every year, and got them before chemo started. If your in tx, you may have to time it to your cycle.
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Ginger..that's a question I've been wondering about. At first, I thought I'd have surgery by now, and would be starting chemo in early October. So I had been wondering if I should get my flu shot before starting chemo. I have been getting them for about 6 years.
I now know I won't have surgery until oct. 22, so chemo won't be til probably late nov.
Blessings
Paula0 -
I am a year 1/2 since surgery a year since chemo & herceptin and 10 months since rads. Last year I didn't get the flu shot because the onc said no my resistance was too low from treatment. I've never had one before b/c either. Blessings, Ginger
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Check with your PCP and your onc's office - I hadn't ever had one in over 65 years but have had them last two years and haven't had the flu but then I rarely got it before either. I DID get pneumonia two years ago and have since had that vaccine - last winter didn't even get a sniffle.
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Yes, you should get a flu shot! The winter after I did chemo, my GP had me get a pneumonia shot too (which lasts for ten years, I believe), if no one mentions it to you, you might want to ask about it. This fall, I am going to ask about the shingles shot when I go in for my annual, I know a couple people who have come down with shingles, and it is nasty!
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