Arimidex - Coping with the SE's
Comments
-
Hey Christine...good morning to you. No school till next week?
0 -
Susan, you are so sweet.....that was my way of being "cheeky" to you and musical.....
I sent you a PM explaining......Musical.....I told Susan my "cheekiness" comes from being Scottish....oh that's my excuse for all my bad behaviour.....blame it on the Scots....lol0 -
Pfffft sad sad excuse Christine...you have been here since you were 18 LOL
0 -
I think Musical is in bed...she is in New Zealand and I believe they are 17 hours ahead of us. I need to check that out again.
0 -
I posted this about a year ago, but it may be helpful to some of the new gals:
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
0 -
ruth...you covered it all...an ounce of prevention............it's all just common sense but at the same time you don't need to get all wrapped around the axle either. Everyone just needs to be aware of ANY changes!
Your comments are very helpful and pretty much cover everything. Thank you from someone who has LE!
And don't forget the prunes..maybe they help LE too!
0 -
Susan, I came here when I was 23yrs old.....big difference from 18........lol
0 -
Oh dear...mea culpa...of course, how silly of me!
0 -
More coffee, me thinks😎
0 -
kj - I just posted this on a LE forum - it kind of pertains, but check out some of the LE forums for more info, it has links to the LE sites at the end -
There are two women I met in our Reach to Recovery Training that had BC 20+ years ago and just developed LE, it can happen any time. There's another lady on these forums that (mostly the LE ones) that is Stage 1, had lumpectomy, only 2 nodes and has LE. So, like BC, I think it's kind of luck of the draw. We do have to be careful about cuts, burns, bug bites, but my experience is that those things don't trigger my LE (and I've cut myself pretty badly a couple of times, plus had carpal tunnel surgery on the LE side), but I had 2 punch biopsies on my MX scar right next to my sternum, and that had my arm, hand and fingers swelling within 1 hour. Never sure what can trigger it or when, remember though only 1/3 or so of us get LE, and the more extensive the treatment the more likely we are to get it. Just use caution, but don't over worry about it. There is even a women that has it on her PMX side on these boards. BC & LE are crazy, unpredictable diseases!
I do think that you all should be assessed by a certified LE therapist though, so you at least have a baseline, know what to do and what to watch out for. Very important thought the the OT/PT... is certified through something like NLN or LANA. You can go to www.stepup-speakout.org/ , www.lymphedemablog.com/ , or www.lymphnet.org/ for more information on LE and help finding a therapist.
0 -
I'd like to add to the LE talk a bit, above I mentioned that a punch biopsy triggered my LE, but I've also had flares from using bathtub cleaner without a glove, walking w/o compression for too far, lifting a grandbaby without compression, and driving long distance w/o compression - the main thing for me is I have to be careful not to overdo with that arm - sometimes the smallest thing will cause swelling, other times (like I've cut myself pretty badly a couple of times) and nothing happens. Just pay attention, and having a visit or too with a good, certified LE therapist arms you for the future.
0 -
Hey, Indeedee 7 ish hours ago would equate to me being in bed doing this....ZZZZZZ being 4 a.m.
Well things sure have been moving since yestyerday. Since yoore all game to carry on with LE I will too
Great advice ruthbru. Only thing i can think of to add is keep the invaluable antibiot cream handy. I cant tell you how many nicks and wee skin breaks that threatened to turn nasty until I put this stuff on. Usually everything is all sweet the next morning. I swear by it. Oh and another thing... and I DONT consider this in the least alternative. It is COMMON SENSE. There is a proven link between the lack of VIT D3 (cholercalciferol) (otherwise known as good ol sunshine) and BC. I'm on 50,000IU 2 weekly. The whole story of VITD3 is fascinating. That said, I think there is way too much credence given to staying out of the sun, AND the use of sunscreen. SOme of the most insidious toxins are in our sunscreens, not to mention nanoparticles. The key is NOT to get burned, but get out in that sunshine ladies and gents and up your VITD3 which is actually a hormone.....notwithstanding the fact we DO need to be aware of not letting our LE arms get hot, but there are other parts of our bodies that we can expose to what used be known ( Propaganda anyone?????) as good ol sunshine. schatzi,
"you don't need to get all wrapped around the axle either"
hubby is a V8 boy ...Im sure he would laugh at this... I thought weight bearing is a case of being on the tootsies and my tootsies are a syndrome all in their own right. I said awayz back I was going to check out some hardware (elliptical trainers I think they said). I still wanna do that. I don't want my bones going awol being on the A team. Yes I'm definitely interested in these exercises you speak of.
As for gloves, well that was a question I sought the answer to from here, step up speak out, and my LEist. (lol - not necesssarily in that order) We still seem to be getting conflicting advice from reputable people. Bottom line, if theres any further swelling in ahnd...get it seen to. Thats what happened to me, but not really bad, just a slight swelling near the wrist. I now wear a glove some of the time. The other part of the time - if it cheeses me off and it usually does, I ripp it OFF.
THE LAST THING I EVER WANNA DO IS WRAP..... YUKK YUKK YUKKKKKK!!!!! GRRRRRRR
There is a thread that say "hats off to those who wrap" or something... I'm too scared to go and look in case I get blood pressure issues.
0 -
HA... I tried wrapping at my first PT session...by the time I got home, it was hanging off my hand. That for sure wasn't gonna work!!
Musical...MY PCP assured me these exercises were a good alternative to those of us that can't do regular WB'ing.
OK...lay flat on your back on the floor (can use a small pillow if need be)...arms outstretched to the side. OK clap hands together from the floor to over your chest. 60 times...next...backstroke both arms alternating...60 times.... ride a bike hips as high as possible...60 times...repeat as many as you can. Build up to as many as you can...he said repeat 6 times but that is impossible for me. Hope this makes sense. It sounds foolish trying to describe this ..he was sitting in his desk chair showing me.
I do them before I shower laying on my bedroom floor. I can't see this being any good for weight loss tho'.0 -
I was wrapped ONCE and I tore it all off at about 2a.m. Drove me nuts. I couldn't drive I couldn't do squat all and theres people doing this every day!!! What a serious disruption to your life. WHAT a MIGHTMARE!! For sure if I can circumvent that racket trust me I will.
LOL Schatzi I can't see how he can say they are anywhere near like weight bearing, but we have to do what we can do and if we cant then we find the next best thing. I'm actually not too bad if I go early in the morning. I can get quite a lively pace up, but usually my feet will be roasting by the end. Winter is MUCH better for me. As for weight loss, yea I need to do it. Some of us on the AIs find that a real drama. With a bit of determination I can put less between the teeth and I don't mind cutting out on sugar. I aint got a sweet tooth.
0 -
The only sugar I add is to my coffee but so much has sugar (fructose) in it. I am a lover of carbs..just can't win! As for exercise...any movement at all is a plus for me.
0 -
I just started AI's last weekend. I am 29 - on ovarian suppression and my doctor just switched me to Femera from Tamoxifen. I started Tamoxiden April of 2011, so I have been on for a little under 2 years. I did great on Tamoxifen, but the Femera has already started to effect me. For the past three nights I haven't slept. I toss and turn, I lay awake and stare at the clock. Normally (pre-Femera) I fall asleep quickly and stay asleep for most of the night. I've also been having extremely bad night sweats this week. I can't believe this has started with only a week on the Femera. Please tell me this gets better! Does anyone have any ideas for getting better sleep while taking this drug? I can't imagine that the lack of sleep is offset by the benefits of an AI. I don't want to take anti-anxiety meds every night to sleep - and honestly they didn't do much for me when I tried them on Sunday. Any tips or tricks to getting my sleep back would be much appreciated!
0 -
Yes Schatzi youre so right about the fructose. I think fruit has been over rated for that reason. It's a case of moderation, but the processed sugars we can actually do completely without. They don't do us any good whatsoever. Guess it's up to the individual how much theyre willing to sacfrifice in the end. I'm growing Stevia and I do have to learn how to process it to extract the sugar, but they say pretty much anyone can do it with a bit of know how. Big giganta's don't like you knowing that, they want you to buy the crapola.
Scottiee - gosh I love both Scotland and Ireland. Love both of your accents. The landscape just does something for me too. I know the further north you go the more wild and isolated it can look. Just love that! Sometimes we see a doco on places around the world, and everytime I see your landscape it just draws me.
See Arimidex, you dont own all my life and I m not going to continually moan about you so TAKE THAT!!! ... LOL nice to say something nice for once.
0 -
Just noticed that my Omega 3 fish oil under other ingredients lists SOY!
I can't believe I did not notice this before, now I am freaking out!
Is it something I should be really worried about?
Mena
0 -
Mena, I think I mentioned before I take cod liver oil and chia to avoid this issue. Probably not enough in there to worry about, but so many things seem to have soy in them, that I guess it all adds up.
0 -
musical....yeah it's hard to find ANYTHING without fructose in it. I suppose I have been eating that garbage for years...to tell the embarrassing truth, I really never paid much attention. Until BC, I was fairly average weight and basically healthy. I ignored exercising (I tried but I suffered too much) and became a couch potato. I am paying for it now...weight and aches and pains. I do what I can. DH retired today and he says we are going out and about and no sitting around anymore LOL,,,yeah sure we are! It's -2C out there!
Christine...doesn't the cod liver oil repeat on you? And still NO FLU!!!!!!
0 -
Susan, I grew up on the stuff....my mother gave it to me every morning before going to school. And no it doesn't repeat....no issues with it at all. And still no flu.....lol
0 -
Thanks to all you ladies re: LE. I will definitely go on that forum and recommended websites.. I have an appt. with my BS in a few weeks and will discuss with her as wel.
0 -
does the cod liver oil come in pill form?
mena
0 -
schatzi ...Yes we do what we can... Big gentle hugs. -2 eh? ummmm would you like to swap... LOL we have a perla day here cloudless blue sky cool this a.m. but getting too hot for me now. We are approaching mid summer. Poor Oz are getting 45degr (cent) temps. :-O ! PASS, I'd expire.
"Is it something I should be really worried about?"
Hi Mena, we should worry about something as much as we can pick up spilt milk, because we all do things we wouldn't have done if we knew. Lifes like that. However once we know then we can change if we want to. I know this about soy, and as such, will give it the widest birth possible AND will speak out against this where ever there is a willing ear ...
1/ Red flag 1....It is the darling of the food industry and people have met an untimely end through speaking out against it..... example: There was a NZ website dedicated to exposing the whole soy issue and it is no more....why? because the owners a hubby and wife team got taken out in a "car accident" so I found out recently becuase I wondered why I couldn't get their website for ages. ...BUT the last time I looked it was on the "waybackmachine", an internet achive for gazillions of websites and still counting. OK just went and checked and yes it's still there....
At the bottom of my post theres 2 links. They dont work for some reason from BC forums, but if you paste them into your browser they do. The first denoting the top page and generally a calendar view of when the waybackmachine crawls the website in question. In other words you can view these "snapshots" of a website from various dates. The 2nd is the website intact with clickable links, just like it's up and running.... THANKYOU WAYBACKMACHINE!.
2/ Even if SOS (soyonlineservice) is a bogus site and everything they say means squat, I would still give soy a wide birth on the fact that (red flag #2) almost ALL of it is GE and GE is an outrageous and horrifying attack on all of humanity. There are NO WORDS STRONG ENOUGH to describe the horrors of GE and there is adequate proof from insiders who have joined the dots and seen it for the monster it is and exposed it. Funny how people would rather believe a comfortable lie rather than the hard truth.
3/ Pursuant to 1 and 2 (red flag #3) it is in almost everything. From food to cosmetics to stock feed! THAT is OUTRAGEOUS!!!! Health food shops still sell this rubbish under the guise that theirs is organic and it is touted as healthy. If contains endocrine disruptors I want to know about it. Heres a small excerpt...
QUOTE SOS
Phytoestrogens
The endocrine disruptors in soy.
You've probably heard quite a bit about phytoestrogens. The plant compounds that mimic estrogen are touted by some as miracle agents that will prevent cancer, coronary heart disease and osteoporosis (just to name a few).
But there is a much darker side to these compounds which are phyto-endocrine disruptors by any other name. You'll be shocked to learn that these compounds may actually increase the risk of breast cancer and cause thyroid disease, and angry to discover that soy formulas manufacturers refuse to remove them from their products despite knowing that babies fed soy-formulas risk irreversible damage.
END QUOTE SOS
Sorry but when I see people exploiting others for the sake of the mighty dollar it raises my ire good and proper and the whole sordid story of soy is certainly no exception.
HTHS
http://wayback.archive.org/web/*/http://soyonlineservice.co.nz
http://web.archive.org/web/20110721041417/http://www.soyonlineservice.co.nz/
EDITED ...to say these do work afterall.
0 -
Mena.....good question, but I have never seen them ....I just take a tbsp (quickly) and then finish my coffee to mask the taste...works for me
0 -
I try to avoid soy, but it's almost impossible, because they seem to use in in just about everything - my Onc's said if you have it occasionally it should be ok, but DO NOT take any soy supplements, like the kind to help with hot flashes
0 -
Hey Linda--speaking of hot flashes
has anyone tried vitamin E? I've only been on Arimidex for 6 weeks, but have started getting night sweats which are totally interrupting any sleep I hope to get. I started researching this and found that vitamin E was often recommended. I just started it 3 days ago. I only woke up once last night--too early to tell if E works or if this is a fluke. Just wondering if anyone else has tried this??0 -
Mena.....just researched and you can get cod liver oil in capsule form......check for soy content though.....cheers
0 -
LindaKR, using soy for hot flashes? That would something for me.... I never had hot flashes during menopause and since I started arimidex, I am walking around the house with a coat!
Mena
0 -
Mena - when I started on Arimidex 9/10 I was freezing all the time, didn't have hot flashes, but because of SE's (mostly Pain, pain, pain) my MO changed me to Femara (pain worse), then Aromisin (exemestane), which I'm still taking, not cold with either this AI, hot flashes, hot flashes, hot flashes, and just a tad less pain
I've tried amitryptiline, nortryptiline, and am now on Effexor for the hot flashes (they are supposed to help with neuropathy too), but though each helped some at first, after a couple of months, my neuropathy and hot flashes just start getting worse - going to ask my PCP when I go in next month if we can try gabapentin next, I hear it works better, sometimes, and has less side effects. Sorry to hear your cold all the time. It was a really warm fall here when I was on Arimidex, and just couldn't get warm, when I mentioned it to my MO, he said - not the arimidex - it causes hot flashes,
but..... I think we were the exception to that. 0
