Arimidex - Coping with the SE's
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I'm off Arimidex for a week and still having numbness and tingling in both my hands. It seems to come and go. It does not seem so intense during the night. This is where it actually started. I was on Arimidex for two months so I would think it takes that long to reverse from my system. Seeing ONC tomorrow to see what direction to go. My guess is that she will switch meds.
Kam170 - I agree that it's the meds doing this and not LE. I was told when I went for a visit with the LE nurse that we can get LE even 20 years from now!! Certainly we need to always be aware.0 -
spunky, yea indeed why dont they train others. I get footdraws/inserts and I went through all sorts of dramas to finally have that "lovely pleasure" granted me ( NOT) . Long story short, you can be seriously up against it with all this. It's a pain that you have to constantly jump through hoops and go the long way around to get quality help.
It never hurts to use the good arm for BP, blood draws etc.
Yes there are some circumstances where it's warranted but to say never, is not correct. See what Binney has to say about that and she knows.. In my experince because of both BP and needlesI suffered increasingly adverse issues such as swelling, lumps reactions etc. My "good" arm copped the brunt of everything and on my 4th chemo they HAD to use my cancer side arm. My supposedly "good" arm said enough!!! Now I have "suspected" LE on Prophy side and wear a sleeve on that as well as other side.
I agree that it's not good to absolutely freak out about all this, but to exercise some healthy vigilance and caution would surely be prudent.
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Ok, just got my Dexxa results, not good. Numbers doubled from last year, in a bad way. From 2+ to -2. From -.3 to - 1, etc. Yuc. Still osteopenic, but crap, that's not good for just a year.
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Moonflower--wow, that's a big change in a year--do they think it's the Arimidex? I guess you need to eat more prunes
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Jun, yeah, I know its a big change. But you know what my other problem usually is, right? Starts with D and ends in iarrhea! LOL prunes don't make it into my diet often! LOL
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Musical
Wild Salmon is well known for its anti inflammatory effects.Also , turmeric, garlic, berries, extra virgin olive oil, kelp- all foods that supposedly fight estrogen fueled cancer as well!
A single baby aspirin a day might be advised as well, depending uopn what else you are taking.
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Be careful with aspirin...can cause macular degeneration in some people.
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purple...yea I love salmon. If theres still wild salmon in NZ AND that one can purchase, then I don't know about it. AFAIK these days it's all farmed, VERY expensive. Farmed = fed soy. PASS!!!!!!! I wouldn't touch soy with a barge poll. One article I read said 60% of food contains soy. Almost all of our soy is imported from South America, and something like 98% of that is supposedly GE. Whatever the case I wont touch anything GE if at all possible. GE is an outrageous assault on humanity. It is my view that SOY is a horror story all in its own right and there has been some real skull duggery about it. The red flag being that it is the darling of the food industry and people have been "shut down" for speaking out against it. As you can see I have very strong views on these two things.
Similarly....
We recently had a doco on bogus Extra Virgin Olive Oil. I've since learned that it shouldn't be yellow, but a nice greenish colour and a lot of the SO CALLED "pure" product here IS very yellow!!! (grrrrr) If I sound overly cautious, it's because theres so many rip off artists with the whole food industry it's just chronic. Love garlic too. At least we can get organic garlic. I wont touch margarine. I heard a knowledgeable person refer to it as "one molecule away from being plastic" so...another PASS. I eat very simple, and gone back to the good old butter REAL milk, red meat, all in moderation. Arimidex certainly puts something extra around the middle or makes it harder to shift.
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Arimidex (all AI's) can cause osteoporosis! I only have DEXA's every two years, just had one and supposedly it's ok, but if you show any loss, would think that they'd monitor every year, or less.
Moon - so sorry to hear your numbers are worse - did they put you on any of the "bone building" drugs?
Wow - that's too bad you can't get wild salmon in NZ - lucky to live on the Oregon coast and have lots of friends that salmon fish!!! Only eat wild caught fish, grass fed beef, organic veggies, I'm looking at raw milk, but try to eat only organic dairy products too, that's a little harder as the price is sooooo prohibitive
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"you can't get wild salmon in NZ"
If it's available then no-one has put me onto it. I should do some more asking though as I'm not sure..... anywayz NZ rivers are polluted and we DONT have the clean green image that the Govt. et al purports.
Sounds like you have a good healthy diet. Good on you for getting ORg Veg. I came across something that said an astronomical amount of US fruit and Veg is irradiated. That is criminal. You are essentially eating worthless polyfiller when something is irradiated. I try and grow as many veg as I can. Tomato's are a shocker. If they are sprayed you cant get it out of the product. Same here, organic is by and large prohibitively expensive for most people.
There is a lot of hocus pocus within the whole food industry, some issues having far more insidious consequences than others. From what I've discovered weighed up and deduced, grain fed stock (called store stock here) and milk rate amongst the worst. For example, unless it's organic, it is my understanding the all milk once it leaves the vat is "deconstructed" and goes through processing such as drying which involves "extrusion" which is said (according to Sally Falon) to introduce toxins. This process is also used in puffed and flaked products such as puffed wheat breakfast cereals etc. Stock such as cattle and sheep were not designed to eat grain products, much less GE grain. IT IS CRIMINAL what they are doing here now, don't know about other parts of the World. They are incorporating (industrial) sugar into stock feed! Lets just say I know this first hand. Farmers have thus complained about things like cows not fitting into bails and suchlike because they have put on so much weight, plus they are very unhealthy. How sad is that!
Dont get me started on aspartame and MSG and all the plastic crapola that taints our bodies and food with environmental estrogens. Sorry for the rant but it makes me irate that Cancer is an epidemic. Anyone can shoot me down in flames, I dont care... but I reckon these definitely factor in and therefore exacerbate and tip the balance into cells becoming cancerous.
The dexa scans which I take it, are the equivalent to our bone density scans ... I've been told by the people that do them that theres little point in taking them inside 2 years as they don't show up and I've heard others on BC forums say this too but others say they have them sooner, like yearly. Anyones input on this would be appreciated. It IS a concern to me because my BD was slightly above normal BEFORE TAMOX. Tamox is said to have a beneficial sideeefect of slightly increasing BD. I should have started off very well before Arimidex round the beginning of this year. A BD scan I had a few months ago showed a small loss but still in the normal range. I still have another 2 years on this AI ...naturally that is a concern.
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Regarding bone density, mine was fine before Arimidex. Two years later, and I have osteopenia. I was premenopausal before I was diagnosed with BC. My onc will order another bone density in a year because I lost so much in two years.
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I wouldn't touch soy with a barge poll.
No argument here .
DEXA CAN tell before 2 yrs. I have broken 3 brones and will not touch arimidex. My last scan shows me going right into osteoporosis ( had osteopenia ) I was in actonel...no thanks.0 -
I hear you Purple, but I had three large tumors 80% ER+, and for me the risk of recurrence is too great without Arimidex, so I will have to deal with the bone issue. It's like having to choose which risk I am willing to take, and cancer recurrence is not on my list. It's a very individual decision, but I respect yours as well.
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OK I wonder if you guys BDS machines are the same as ours. If they are, then someone in my med team is either telling porkies or is ignorant or both. I was thought to be post menop when it came to Tamox vs AIs, but I had a proper menstruation and so the blood test did squat in my case. As such, I was put on Tamox for 2 years.
Purple, for my staging and grading etc, it was very beneficial for me to be put on an AI. I'm not wrapped about osteoporosis I can tell you, but if it keeps the cancer away..... Oh and whats actonel?
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I'm not wrapped about osteoporosis I can tell you, but if it keeps the cancer away..... Oh and whats actonel?
Hi Musical
Believe me, it would have been in my best interest to be on an AL too...but the choice for me was much more difficult with my bones. Once you've broken a few you begin to realize how debilitating it is. Anything that can PUSH me in to osteoporosis a day sooner will be vetoed by me. I have seen disabled ppl, with broken hips sent to respite. No thanks.Actonel is like fosomax ...it is for the bones.
Some say it's good- the jury is out. It sure did not help me.
Good luck to you.
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I too had/have a high risk for recurrence so have chosen to stay on the AI, as it's quite a bit better than Tamox in preventing recurrence for people with my diagnosis. I, luckily, haven't had a broken bones, and my bone density seems to be staying the same. I did discuss getting Zometa prophylacticly, as it also has shown a reduction in recurrence, but he said that it has a fair risk of causing osteonecrosis of the jaw, and wasn't willing to put me on it unless I had a fracture, or my bone density changed dramatically. So for now, just dealing with side effects - it's hard to figure out which side effects are caused by which treatments, but I think that they are all exacerbated by the AI! Sometimes it think that it's like menopause on sterdoids!
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Yes for sure osteop IS scary, but recurrence is scarrier in my view. Ive ALWAYS said it and will say it again and again....There are NO (really) good choices with BC. It is ALWAYS the choice between the lesser of two evils. Im sorry about your bone issues though and thats why we all have to take into account our own extenuating circumstances.
There seems to be more than the usual scary stories about these infusions etc so I hear you on the bone meds. It's something I will have to look into more when I can gather enough wherewithal to do it. Im trying to counteract bone loss with weightbaring exercise, though this is soooo costly for me with my burning feet and all, but still with a bit of juggling with time frames, it's doable. Just.
.Hope you DONT suffer any more broken bones Purple.
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I did the 5 years of Arimidex & my bones came through fine. I exercised like crazy, did extra calcium plus vitamin D, ate prunes and a couple servings of dairy products every day. So it is not a sure thing that you will lose bone density on Als. It is mostly a combination of how healthy your bones were going in, good genetics, and hard work that keeps them healthy....some of which is in your control and some is not.
I have had a two good friends die of cancer this year, to me it would have to be a pretty horrible SE to be worse than what they and their families went through.
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to me it would have to be a pretty horrible SE to be worse than what they and their families went through.
"to me" as well ruthbru, and I'm sorry about your friends. I helped my aged mum caregive my sister and watched her DIE with this scumbag disease and it was just AWFUL!!!! the whole thing and nobody knows what it's like unless theyve been there. Right now I'm feeling touchy about it cuz it's coming up 7 years and I miss her BIG TIME.
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Purple - are you taking Tamoxifen? That's what I would do if I had your bone issues and my DX, it's very effective against recurrence too.
BC experience seems to be filled with hard choices, every time I turn around there seems to be a new one. It's not always easy to find the balance of benefits vs risk - quality vs quantity - ...... Wish you all the best in finding out what works for you!
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Ruthbru, how long have you been "off" arimidex? Do you feel better now? I would like the link to the bracelets you mentioned. I would feel better wearing one.
In regard to all the discussion of LE, not a word was ever mentioned to me of precautions to take. As my signature indicates, I had 4 nodes removed. I thought I wasn't in any danger of LE until I read some of the experiences here on bc.org.
I wonder if those of those who can tolerate arimidex aren't getting the full protection like those who have a lot of se's.
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Hi carole,
I wonder if those of those who can tolerate arimidex aren't getting the full protection like those who have a lot of se's.
thats an interesting question because I heard similar questions put forward about tamox when I was doing it. For example, apparently having the hot flashes was equated with it being more effective. I don't know if there were some real legit studies done on this or the juries still out.
I thought NZ dragged the chain in just about everything to do with this type of stuff, but apparently not. I see this ignorance about LE is world wide, and people like Binney and Kira and others do a heap of good on BC Forums by putting the message out there about this horrid debilitating LE. The good news is you may never get it, but it is a wise person who gets wised up about LE all the same. All I can say is ignorance might be bliss now, but your chances of it staying that way are much slimmer if you don't take the basic preventative measures against LE.
Guys I know I sound off strongly about this LE thing, but if it prevents some of you from getting it or a worse case scenario then good! I'll take the risk.
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I was done the middle of September. I really feel exactly the same. BUT my cholestroel dropped 20 points without me doing anything different, so that was cool to find out.
I don't think the SEs have anything to do with how effective is it. It's just that everyone's body is different. Some people are deathly ill all through pregnancy, others say they have never felt better. The babies seem to all turn out the same either way.
Beautiful medical ID bracelets can be found at www.creativemedicalid.com. They give you information on how to measure & inscription suggestions for various conditions, mine says: "No IV, BP, needles in left arm"
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Thanks for the response, Ruthbru. I will check out the bracelet website. I'll probably use your inscription.
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a pretty horrible SE to be worse than what they and their families went through.
Having serious broken bones in the femur or hip and becoming disabled are pretty horrible for both pt and family.Arimidex does NOT guarantee you anything, and my Drs all said my luminal A cancer was the lowest possible recurrence risk. the cancermath gives me 0 more mos with arimidex. My bone can OTOH gives me highest possible risk of what is called a ' disabling fx". After having three breaks in my 40's , I am paying attention.
Not all of us can do high intensity or weoight bearing exercise . Some of us came into this with serious helaht challenges that make our TX much more difficult.I appreciate the post that recognizes we are all different and I hope you ladies who do NOT have the serious soteo issues are just grateful you can take these meds.
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BUT my cholestroel dropped 20 points without me doing anything different, so that was cool to find out.
maybe it was all that exercise, ruthbru!0 -
Visited the website with the medical bracelets and am now $106 dollar poorer! I ordered two. One for sports and exercise and another to wear when I'm dressed to be out among people.
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They are really nice, and you will like them, Carol.
Purple, I've been exercising with the same schedule all the way through, so I'm thinking it has to be the 'arimidexlessness'. And yes, everyone's situation IS different. Since you have a low risk & other health issues, you are in a different situation than me (for instance) ,and you have to do what is right for you. Alas, there are no absolute guarantees no matter what a person does or doesn't do....otherwise it wouldn't be life, would it? Sigh!
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Alas, there are no absolute guarantees....
That's life !0 -
I've been reading this thread again. I was on Arimidex for over 5 mos. The SEs were horrible for the 1st 3 months. Then they got better for awhile. Then about 1 month ago they got REALLY bad. Like Purple32 I already have bone problems. I have both osteopenia and severe osteoarthritis. I've also already had a hip replacement and 10 level thoraic/lumbar fusion (T8 to S1) that failed. I'm a mess really...
Anyway, I gave Arimidex my best for now. My wrists and fingers are hurting so bad they feel like they are going to break. And my pain meds don't seem to even touch bone pain. My memory has also gotten much worse. I called my Onc yesterday and she took me off Arimidex for 2 weeks to see how much of the pain is from the drug. We also talked about me going on Tamox. She thinks it might be a better idea for me now that my bone scan came back. Like some others here, my risk is very low anyway. I'm stage 1 and grade 1 and besides the lumpectomy I've had rads. I also understand that I'm probably more at risk than some because I'm 63 yrs old. I'll let you know what happens soon. BTW, one of these days I'll fix in sig...
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