Arimidex - Coping with the SE's
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I only know that my oncologist said NO to fish oil ONLY due to it being an anti-oxidant...NO anti-oxidants should be taken DURING CHEMO...NOW is fine for me to take it, and it helps me tremendously with triglycerides especially...not so much for cholesterol...but helps skin, constipation. I'll have to check my brands that I use, as it does not have soy/estrogen at all...they are 'pure' ingredients, except what is used to make the gelcap. Sorry for any confusion here. I DO take a mega-dose of omegas a day (9 grams/1200mg gelcaps/7-8 daily, under my primary doc's suggestion, so far, she's been right on all she's suggested). ~juli
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I take Schiff's MegaRed, Omega-3 Krill Oil. They purport "3X better than fish oil for supporting Cardiovascular Health". Krill Oil 300mg ...Omega-3 Fatty Acids 90mg ...EPA 45mg, DHA 27mg. Other ingredients: Gelatin, glycerin, sorbitol, water and vanillin. Contains shellfish (krill).
Thought I'd forward this statement about Vitamin E that I just noticed from wikipedia.
Although originally extracted from wheat germ oil, most natural Vitamin E supplements are now derived from vegetable oils, usually soybean oil.
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Hi gals:
Well, I just talked to my GP re: fish oil, and she said to TAKE IT!. I had way less SEs from arimidex, and for the first time in my life, perfect blood pressure. She says my onc is nuts, but a good nuts, as in way over careful.
I can't get my onc to give me a reason, except for "phytoestrogen"....I've done research and this makes no sense to me. He won't let me do flax or tofu or any soy (except sauce) either.....
I don't get it at all....he is specifically anti fish oil, and everything I've read says yes to it....
I want to take it and at least I am going to eat salmon like a freak.
xoxo
annie
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As I said, my oncologist and all my docs at the time said NO antioxidants while on chemo meds. That was the reason for not taking the fish oil at that time. Now that I'm done with chemo, all docs recommend the high dose of fish oil/Omegas (9 grams a day). BTW: KRILL if you can get THAT, is THE best fish oil (if not allergic to shellfish).
Another problem: Since my big toenails fell out during chemo (this doesn't really go with this thread though, sorry!), and grew back in SUPER-DUPER thick & curved into the skin, I'd had to go to the foot doc every 8 months or so to get the toe numbed (thru neuropathy I don't feel my feet, hence don't feel the pain of the nail growing into the skin) and the nail scraped out of the skin. I had a 'permanent' solution done to one toe (numbed and scraped down to the root, so both sides of nail never EVER grow back, but have most of nail there)...I wait til I can 'feel' the pain, which today is too late, it's infected. In one day it got red/swollen and pus-y...(sorry)...so doc is getting me in later to get it scraped out. Anyone else had that problem with the nails falling out and growing back SO hard, they gradually grow into the skin??? OUCH-O~!
Thanks for listening, lol...I know this doesn't belong here. :O ~juli
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Of course it belongs here! My toe nails were really soft and creepy during chemo, they didn't fall off, but now extremely hard and ridgy. I have to keep them polished in the summer because they look like Frankenstein toenails (the big toes anyway). I got a heavy duty toenail clipper and keep them very short so they don't have time to grow into the skin (hacking away at them when I do trim them). I probably should see a podiatrist. I'm just glad they grow really slowly. ARGH!!!! Ruth
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Hi Ruth, thank you, you are always so kind~! Well, I also trim my toenails, but they grow from the roots up INTO the skin...no amount of trimming helps. It's actually called chemo-toe. My BF has offered to use his Bowie knife and help me dig into the skin to get the nail out! LOL And, actually my podiatrist says NOT to trim them so short, cus then they actually grow more into the skin, if you can imagine it. So, off I go today to get numbed up and scraped out...then it feels perfectly fine for 8 months or so again...I probably will get the 'permanent' solution on this toenail as well, as it gives me trouble so often. That worked VERY well on my other toenail (no sides to the nail ever grow back). Yes, I'm glad they grow slowly too, or my podiatrist would make more money off of me! Having permanent damage/neuropathy doesn't help...I can't drive a stick shift anymore, can't feel the clutch. So, got a better alternative, paddle-shifters!
~juli0 -
Oh, cr*p, juli -- is the neuropathy from chemo, or did you have a risk of it because of something else? Don't answer if I'm being too nosy. I'm just wondering, 'cause I had Taxotere & Cytoxan. I developed a (temporary) buzzy feeling in all my fingers with each of the last 2 rounds; and the big toe on my left foot went numb and still isn't right. Somehow I hung on to all 10 of my nails -- they didn't even turn dark or peel back (much).
As an update: I've switched to generic Arimidex ("anastrozole"), and I am determined that it will work just fine. (I've only been on the generic for 3 days, which isn't nearly long enough to see a change after 2-1/2 years on the brand-name.) My SE's from Arimidex and/or old age have fluctuated a lot from day to day (aches, pains, stiffness, dry eyes, all that stuff); so even if the generic does do something different, I'm not sure I could tell whether it's the new pills or the older me. <sigh>
My PCP told me to take fish oil capsules for the Omega-3 FA's. He also wanted me to start on Niaspan (a prescription form of delayed-release niacin), but I never filled that prescription. I'm already on Crestor -- I have been for almost 7 years -- and my HDL's are super-high and LDL's and triglycerides are nice and low (well within the healthy, low-risk ranges). But, there's some little niddling subunit of one-or-another of the lipoproteins, from some lipid analysis the FDA hasn't even approved as clinically meaningful, that's ever-so-slightly out of whack. And for that, he wants me on niacin??? I don't think so.
I'm taking the fish oil capsules, when I remember to fit them in amongst everything else. I've been seeing commercials for the "Red" stuff (from the krill) on TV lately, so maybe I'll try that. I've been trying to avoid major sources of soy but not worrying too much about the little stuff (i.e., switched from "vegetable oil" to "corn oil" but still taking Vitamin E in my multi-tabs). Otherwise, I think I'll just stick with whatever I'm doing, 'cause it seems to be working fairly well. I obsess about enough other things -- don't need to go crazy over the small stuff.
otter
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Otter: Neuropathy can be an SE of A although for most it shouldn't be. I had pretty severe neuropathy in my feet, and not so much in my fingers, from Taxol... was seeing that slowly subside, and then in late spring or so it stopped subsiding. And then it started reversing and getting worse again in the summer (I'd been on A about 5 months by then). Fortunately it's not as bad as from Taxol but jimenetely (not the proper spelling, I'm sure
), give me a break, please! I wonder if it's more likely for those of us who already have the nerve damage.I've had no different SE's from generic A. The active ingredient is the same, so most women should do OK on it -- or as OK as on the brand name!
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Taxol is known in the medical community for causing neuropathy. The big problem is that many women develop neuropathy symptoms in the middle of treatment, and if Taxol isn't stopped as soon as the symptoms show it's likely to make the neuropathy permanent. It's one of the "dirty little secrets" that isn't talked about. I got in a lot of trouble for telling a patient about this when she started getting taxol. The onc I was working for told me flat out that "some things we do not tell the patient or they'd never agree to take the medication." I was appalled, and quit working in oncology very shortly after that.
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I have been on the generic A for a little over two weeks. I am a lot more achy that I used to be. I was just at my onco today and he said that Arimidex has a cumulative effect and maybe that's why I feel like this. He doesn't think it is the generic A but did say that it could be. He said to give it another three to four weeks to see how I feel and if I still feel bad he will give me a 30 day supply prescription for the non-generic Arimidex. If I still feel the same after taking the non-generic, then it's not the generic A doing this. I guess I will have to wait and see. How scientific is that? (haha)
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otter: NO problem asking questions, that's what I love about this forum. I already had daily migraines for many, many years. The neuropathy in my feet however is definitely from the cytoxin/adriamycin--then taxol/gemzar. It's permanent, as stated above, but it's definitely not just from taxol. The fingertips are still numb, bottom of feet alternatively hurt and are numb, feel like I'm standing on like 5 inches of pad on ball of feet. Got toenail taken care of today, doc remembered me, and said, OH you're the toughie, you don't need to be numbed-up...he was right! He's SO quick and so darned good, it was a bit infected, and bled much more than normal (for me, I don't bleed)...so came home, kept foot up, and it bled kinda thru the bandage, he said to just add to the bandage for today, tomorrow, soak in epsom salts, put more antibiotic cream on for next 3 days. All in all, a good outcome, but do definitely need the 'permanent' solution on that side of toe (numbed and side of nail dug down to root to 'kill' it, got other toe done and it's been perfect, no problems). Thank you for asking.
This has been a great thread for knowledge! As someone else said, we're lucky we ARE doing as well as we are! LOL...probably because most if not ALL of us really are our OWN health advocates...we have to be. (I'm on Aromasin, so really don't belong on this thread, lol...thanks for 'tolerating' me here!)
~juli0 -
Sometimes this all just makes me want to say, "What happens, happens." I've always taken good care of myself, exercise, good diet, etc. etc. I really don't think a few extra capsules of this or that will make much difference in the long run. I went a little crazy the first time (13 years ago), trying to figure out what would be best for me so I wouldn't have a recurrence. It happened anyway. You do the best you can. I'm really not a negative person. Most people say I'm just the opposite. I just know you can make yourself sick worrying about taking too much of this, or taking too little of that, trying to maintain a sense of control. How many people do we know who are doing perfectly well at 70, after a lifetime of smoking and obesity. I do the best I can, trying to judge what's best for myself based on currently available info. It does gets overwhelming at times. I hope not to feel guilty about my decisions. Having never had chemo I don't know what is said about fish or flaxseed oils during treatment. I'm taking Omega 3 for my dry eyes and elevated cholesterol. I'm reading your comments with interest, hoping to learn from them. Just trying to keep some perspective, knowing that new info is always out there, confirming or changing what's currently accepted as fact. My onc has even told me that he believes soy can be a good thing. It's a different type of estrogen than what we are trying to suppress in my ER+ condition. Go figure!
I wish you all the best, knowing what we're all dealing with here! We want to do everything we can to fight this horrendous disease. Try to be strong, but realize some of it is out of our control.
Lane
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LWD,
Very well said.
Nancy
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Don23, the generic A's can have different fillers in them. They're not "exactly" the same as the astra z's A. Some of them also come from India. Check out pharma for each one of the. Perhaps you're allergic to something in the generic A. I experienced this with another prescription that went generic. Ended up in the emergency.
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Ditto LWD. It is, what it is. We do what we can and pray for the rest.
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I finished chemo mid-June, 4 treatments of TC. Now I have neuropathy in my feet. Onco said it is most likely temporary and wants me to take Neurontin. I read-up on the side effects and decided that I do not want to take it. Have any of you taken it? What happened? Also, have any of you recovered from the neuropathy?
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Amen!
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Neurontin can also be used to treat pain from damaged nerves. I took it nine years ago for the nerve pain due to shingles. I had no SE but the Dr did start me on a low dose and build up to therapeutic dose. We also slowly dropped the dose when I was able to go off it.
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Is it best to get a referral from my oncologist for a neurologist for the burning and aching in my feet?
I had a nerve test done and was told that there are dead nerves in my feet....I'm not diabetic....did have Taxol 2 years ago -- on Arimidex for 1.5 yrs so far and switched to the generic AI as of last month -- things have been getting worse.
At this rate, it's a trial to find any shoes that work (going barefoot is even worse actually) and just walking down the hall at work is agony. Have been seeing a chiropractor for 6 mos for herniated disc....blah blah blah, but there is just no subsidence of pain and I'm afraid at this rate, I'll need to be in a wheelchair by the time I'm 70 (God willing I'm still here.) Not sure if the nerve damage is coming up from my feet or down from the sciatic.....Any advice most gratefully welcomed.
Acupuncture anyone? pain meds? injections? I'm already taking so many pills.....gosh...I'm extremely grateful for the treatment that has saved me ---but I'm just so tired & discouraged.
I'm glad to find this thread. Thank you to Ruthbru for sending me a message about it.
Best wishes and glad to join in with you all. Bethany
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Bethany, I too have achy, sore feet. And all I had was Arimidex. Acupuncture helped my knee pain. This past week,I told my acupuncturist to concentrate on my feet. He used moxibustion ( a heat treatment using lighted, rolled moxa leaves, like a cigar) with the acupuncture. When I got home, I immediately felt the difference. I am going back to have it done again. I cannot wear sandals over the winter, and all my shoes hurt.
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I've been taking Neurtotin for about a year. Definitely helps with the syptoms of neuropathy (makes the pain go down). I take a minimal dose; only SE I had was fatigue for awhile. I could up my dose from 1x a day to 3x a day but just haven't felt that necessary. My neuropathy was definitely getting better (almost gone) until the Arimidex kicked in -- it's slightly worse now but not nearly as bad as last fall (walking was really painful then). My mom had severe neuropathy in her fingers from Taxol also, never took meds for it... but she did fully recover. Nerve regrowth is very, very slow. Doesn't happen for everyone but it is possible. I didn't see a neurologist but you might gain some additional insights.
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This suggestion is probably not enough it things are really bad; but have you tried buying really good, supported shoes and getting inserts for them? Dr. Scholl's has some good orthopedic inserts. At our local Walmart there is a gadget you stand on and it will tell you what level of support you need and which inserts you should buy for your foot type. Also, don't go barefoot; wear the supported shoes even around the house, and put your feet up when you can and ice, ice, ice.
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Don23-actually, that is the most scientific approach to sorting out what SEs are from the brand vs. generic drug. The generic will have different chemical fillers in it, and many times the SEs we get are reactions to these chemicals, not the active ingredient itself. The only way to sort that out is to do as your doc is doing. Many of our parents and people in that generation think they are allergic to penicillin when in fact they are allergic to a chemical filler that used to be used in the pills. Most of these people can take penicillin today because that chemical filler isn't used anymore, due to the high rate of allergic reaction to it
Juli-you are welcome here, of course! All the AIs have similar SEs, and stragies that work for one will likely work for another. And this place, all the threads, are a great source of info and answers to questions! Glad your appointment went well, and hope you get permanent fix soon.
LWD-good reminder. We can do what we can with the info we have now, and that's it. With luck, the beast won't come back. If it does, I refuse to think that I could have done something to prevent it. I didn't do anything to cause me to get it the first time! It's not "my" cancer-I did not go out and look for, and I didn't give it permission to come into my life. The bc belongs to the people getting paid to treat it since they are the only ones getting any benefit from it. Sorry, didn't mean to get up on that soapbox again, but that is a hot topic with me.
Char2010-I took neurontin originally to help with the nerve pain of truncal lymphedema after rads. I still take it because it calms down the hot flashes at night enough that I can sleep more than a hour at a time. Most of the SEs of neurontin fade as your body adjusts. The biggest SE I had, besides the sleepiness the first week or so, was feeling spacey during the day, but that faded out after about 3 weeks. For me the spaciness was worth the pain reduction. Neurontin is one of the very few drugs that works on nerve pain (neuropathy).
Bethanybean-seeing a neurologist may be a good idea for you. If a neurologist can't help, then ask for a referral to a pain clinic. There is no good reason for any of us to be in uncontrolled pain, especially treatment induced pain. The medical community has a responsibility to manage the pain they inflict on us, IMHO.
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Early stages of feet neuropathy (I have no experience with severe problems)
One thing suggested by my family doc that has really helped me (I began getting neuropathy years ago, unrelated to bc or any resultant se's): Watch how you cross your legs - crossing them at the knees puts pressure on nerves leading to the feet. It's been a hard habit for me to break, but has made a tremendous difference. New habit: When sitting, remembering to keep my feet on the ground, or only crossed at ankles. I was pretty surprised at the good results from rearranging my posture. Perhaps this suggestion might help others too.
Now we're working on a hip pain that I thought was osteoarthritis but is soft tissue damage, again probably from my posture. It was dismaying to learn I'm such a slob, but I'm glad for some homespun and proactive remedies. (Decades ago, I began getting bunions - this same family doc recommended arch supports or inserts in all my shoes, and sure enough the fairly large bunions stabilized with no need for further tx.)
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Julie...I think this thread has turned into a catch-all for all hormonal treatments and side effects - it seems that the se's are so similar with any of the al's that the remedies for them should help across the board!
I wish we could change the title to "How to Cope with SE's from Hormonal Treatment" - hey, I can edit the initial post....geez, I had a thought! Wow, brain is working today!
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Hi Mersmom:
Thank you Hope you enjoyed your drink.
As to Fish Oil, I myself take it as advised by my onc. My cholestrol level has remained the same however, I do take lipitor.
However, I had no chemo or rads, so I do not know if it makes a diference.
Wishes for a peaceful day. Now on to my fipple and some fat grafting. When does it end????
Hugs, Ronna
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Small neuropathy update: I saw my oncologist today and made sure he knew about my returning neuropathy. He said he saw that with some of his Arimidex patients, but that around one year from the start of A, it usually subsided and went away. A bit of potential good news, anyway!
nativemainer, my pharmacist gave me different information -- that the fillers are usually inert and therefore people rarely react to them. Not that it's impossible to have a reaction to fillers, but he said it's the active ingredient that usually causes trouble, and people who do well on brand names tend to do the same on generics. Not always, of course, and you're right that experimentation with generics is the only way to know for sure if you're going to react differently than with what you were previously taking.
This is a bit more OT but I'm concerned about your penicillin information causing people to take risks so I hope you understand why I'm posting this: I was first diagnosed as allergic to it in the 70's, haven't taken it since, then 3 years ago an incompetent dentist gave me a penicillin drug without my knowing what it was (and although he knew I was allergic) -- and within half an hour I was having an anaphylactic reaction and in the ER. Scary. You can bet he was reported. So while fillers may have been an issue for some people, penicillin is certainly a legitimate and sometimes very serious allergen, and I don't recommend people experiment. I know you were using it as an example and not recommending people with a previous allergic reaction run out and start using it -- just wanted to make sure anyone who has had a previous allergic reaction go through their dr.
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LowRider & Ruthbru: Thank you! Yes, I agree "S/E's from Hormonal Medications" would be a good catch-all for these treatments. Thank you for making me feel so welcome. (ALL of you actually do that) GOOD info on here for sure.
As far as neuropathy, ugh. I have been diagnosed as having 'permanent damage due to chemo', as my neuropathy in feet and fingertips started then, and has not improved at all. As far as Neurontin, can't take it due to my daily migraines (nope, no preventive medication has ever helped, neurontin/topamax make it so much worse, but I have a 'weird' system anyway, everyone responds differently, and it's best to TRY these drugs, on a low-dose, then increasing it as directed/needed). The neuropathy makes the feet alternately hurt/feel like burning/numb-tingling, fingertips numb/tingling. The problem is keeping a check on the toenails that fell out during chemo and have grown back increasingly HARD and CURVED, so they grow from the roots up into the skin. There is a permanent solution (roots dug out on side of nail under novocaine), which I've done to one toe, need to heal up this other toe from the scraping/nail removal on Monday, then go in for the permanent solution on that toe. THAT is one trouble with neuropathy, can't feel the pain in the toe til too late (first time toe was mildly infected by time I noticed it).
BUT, as said earlier too, one does what one can, and don't dwell on it. Just 'git-er-done' on things that have to be done, and move on from there. I think we all basically really DO that, as from reading, it seems most of us are our own health advocates, KUDOS! (We HAVE to be!)
MY best to everyone~~~juli
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I've never liked it when people feel that only people who 'fit' their description perfectly can post on 'their' thread (because that would actually be a thread of ONE, since everyone is different....not that I don't find talking to myself fascinating, LOL). I think we can all offer a lot to each other, the most important things being friendship and support. (there is my mini rant-let).
Juli, my son had horrible ingrown toenail problems as a boy (hereditary issue there!), and had the roots dug out and has never had any problems since. It is probably what I (and you) should do too; just get it over with.
I am so allergic to most classes of antibiotics, that I break out just typing the word!
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ruthbru: I feel the exact same way as you, everyone IS different, and we're all in the same boat. How awful for your son to have that when he was young, but glad that there IS a solution that helps with the ingrown toenails. Yes, I will get the toe permanently dis-rooted (de-rooted?
) as soon as it's past healing what was done this past Monday (it's doing just fine too, NO pain at all). Had my other toe done last Dec. and no problems at all, so it's a good thing, but another chemo-side-effect that we 'endure'~! THX! ~juli0
