Arimidex - Coping with the SE's
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Mountain Gem, I know what you mean. The AI reduces my chance of recurrence from 7% to 2%. I am older, however. Tamox would definitely be better for your bones. I'm lucky not to have severe side effects. If I did, I think I would stop it. Some people get side effects with one, but not another. Good luck with finding a good med for you.
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Wren - how did you come up with reduction in risk of 7% to 2% with AI? Is that using some computer program? I was told by my MO that compared to chemo, hormone therapy gives much much more. I got 9% from chemo. The oncotype score assumes you are getting Tamoxifen. Perhaps you are talking about switching from Tamoxifen to AI's? If so, sorry. I was quoted 2% for that by my MO.
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It was on a sheet my onc gave me. Chemo was never considered in my case. He knew I wasn't thrilled with AI due to osteopenia already. Strong family history of osteoporosis. Since I'm 72, my odds of something else getting me are quite high just due to age. I just had my yearly with my PCP and all my blood work was good, so it doesn't seem to be affecting my cholesterol.
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I didn't know the oncotype score assumes you're taking tamoxifen. My score was 9 and my stage was 1, grade 3, but my bc dr. was very firm on my taking arimidex.
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Carole - The members of the cohort that Oncotype based their studies on, were taking the hormone blocker tamoxifen; AIs weren't around then. AIs are 2-3% better than tamoxifen. Same purpose though. Maybe I'm misunderstanding what you are saying. Grade 3 with a score of 9 - very unusual.
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Not really unusual on the scores. I was stage I, grade 3 and oncotype score of 8. My doctor gave me the choice on chemo when she found out. But, arimidex is not an option. Well, she'll let me try another one if I want, but I see that they all cause side effects. So, I'm just sticking with this since it's the one she picked for me. She's at Dana Farber, so I figure she knows best. Although, after two years of being on the meds, I swear the se's are getting stronger. I really do need to start exercising, too, I know. I mean to. Just never manage to get it done. Had a bone density last month. There was a slight increase in loss. But, they say I'm still in normal range.
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Wren44, thanks for your post. I'm glad the med is working for you without too many problems. I still don't quite understand how to read people's medical sigs. Looking at yours does it mean that you had a recurrence a year after your diagnosis? Is that why you had a masectomy? I'm really surprised by the number of women who have who are stage 0 or 1. I'm assuming there are other factors involved like family history, etc. I need to work on my sig one of these days...
Bev
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Patty9999, like you, I was grade 3, stage 1 with an Oncotype score of 8, and had a choice about chemo, too. I chose chemo and had Taxotere/Cytoxen. Like you, Arimidex was not an option. I have plenty of bone and joint pain, but, long term, I think the Armidex is my best weapon against recurrence.
Did all of you read the highly publicized report week before last, I guess, about docs now recommending that women stay on Tamoxifen for 10 years, not just 5? I asked my BS about the report at my annual exam last week, and she said the authors made it clear that the results were NOT the same for Arimidex and other aromatase-inhibitors, since they're stronger than Tamofixen, and 5 years on one of the a/i's may be equivalent to 10 years on Tamoxifen.
However, she said that for women with micromets in nodes -- like me -- MO's may well consider recommending Arimidex for longer than 5 years. I still have 4 years to go, so everyone should know more about it then.
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Wave...exactly the same for me (4years to go)...I hope by then they find that 5 years on Arimidex will be sufficient!
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Mountain Gem, I was diagnosed in Nov 2011. Had a lumpectomy Jan 4 2012. Report came back with poor margins. Re-excision on Jan 27 found a whole new tumor, not seen on mammo, with different hormone receptors and a higher grade. And still not great margins. At that point, I was spooked and decided I just wanted the whole thing gone, so mx on Feb 22. That finally had good margins and the benefit of skipping rads. I'm scheduled for a mammo on the good side in Feb. I did have an MRI prior to the mx which showed the other side clear.
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I, too, am surprised by the number of Stage 0 women who choose mx, even bmx. There were two women on the 1-step thread who were Stage 0 and chose bmx. I guess it's the fear of other tumors developing. I was stage 1 and chose bmx even though the other breast was cancer free.
Apparently the cancer grade doesn't determine whether the oncotype is a low or a high number. Grade 1's can get a high oncotype and Grade 3's can get a low number. I was so nervous during the waiting period for my oncotype to come back that I started a thread asking the Grade 3's to report what their oncotype numbers were. It helped a little that the numbers were all over the map. I was so, so relieved to get the 9 and skip chemo. But arimidex was presented as a must by my bc dr.
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Yeah, I was one of those stage 0 who chose BMX. My family history was not good. I always had in the back of my mind what would I do if....... And I did the BMX. Good thing too, since that is where the surprise stage 1 IDC of 1.6 was hiding. But then I had 20 years of what if - turned out to be a pretty good choice for me.
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I thought I'd post an update on my experience with Arimidex. Bone pain almost disappeared (i have been taking high dose vitamin D. May have helped...). Hot flashes persist but infrequent, though sometime they bother me at night. Insomnia not a problem. I have been taking 900mg gabapentin and it works. Bone crushing fatigue I had after implant exchange is gone. So maybe it was the surgery, not arimidex. And maybe arimidex stopped working...go figure. I don't care, I'm feeling OK. I do still have some trouble using my brain sometime but practice helps:)
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fmaury--thanks for your posts on SE's...I'm 18 days into Arimidex and see little things, but nothing too annoying. Your brain issues may be from the Gabapentin, which has serious memory SE's.
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"which has serious memory SE's."
Junif can you elaborate? I'm supposed to be going on this drug for neuropathy and *I think* (see I already have memory issues) my GP said something about the joint pain form Arimidex. I'm VERY seriously considering NOT going on it and just toughing things out like I have been doing, We're at the beginning of summer here and neuropathy is far worse in summer.
fmaury thanks for posting. Looking at it realistically, In NZ we can only get 50,000 IU D3 (Cholercalciferol) which you have to have a script. I take one of these every 2 weeks. Last time I looked you could get very small doses at chemist but the price is ridiculous if you were to take what you really need to take. It MUST be D3, not D1 or D2. Since I was doing D3 for long before I went on A I can say it certainly hasn't prevented aching joints for me, but then I don';t know if it would be far worse if I didn;t take D3 either. Some days are much better with no aching at all. Overall I'd have to say it's not getting worse.
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Hi Musical--look up Gab and see all the SEs. My husband was taking this after nerve surgery 3 weeks ago and started doing weird things and ended with a head first fall down a flight of steps. My brother in law was taking it and began to forget how to get places, how to order off a menu..and what the doctors don't tell you is that if it does not seem to be working after a few days, it isn't going to work..there are also studies that show that the higher the dosage the less effective it is. I hate this stuff--threw out what we had. Drs. use this as a 'go to' drug and often don't acknowledge the dangers of it unless you confront them. It does cause confusion and anyone with any type of mental issues, including depression shouldn't be on it. Neither my husband nor BIL had any mental issues until they took this stuff. These are some SE's:
Suicide
Gabapentin has been associated with an increased risk of suicidal acts or violent deaths.[33] In 2009 the U.S. Food and Drug Administration issued a warning of an increased risk of depression and suicidal thoughts and behaviors in patients taking gabapentin, along with other anticonvulsant drugs[34] modifying the packaging insert to reflect this.[27] In July 2009 the manufacturer of gabapentin (Pfizer) went to trial regarding the association between gabapentin and the increased risk of suicide.[35]
Withdrawal
Gabapentin should not be discontinued abruptly after long term use. Abrupt or over rapid withdrawal may provoke a withdrawal syndrome reminiscent to alcohol or benzodiazepine withdrawal.[36][37] Gradual reduction over a period of weeks or months helps minimize or prevents the withdrawal syndrome.[36]
Side effects upon discontinuation of gabapentin that have been reported in medical literature include insomnia, restlessness, agitation, anxiety, disorientation, confusion, light sensitivity, diaphoresis, headaches, palpitations, hypertension, chest pain, and flu-like symptoms.[36][38][39][40] In one case, abrupt cessation of a high dose of gabapentin triggered a seizure in an individual with no history of epilepsy.[39]
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Thx Junif, I appreciate you post. Yea I am going to see my GP tomorrow morning and I already talked to him about it and we agreed I would give it a go, but I warned him that at the 1st sign of anything funky, IM OFF IT. Apparently here (NZ) there is a few hoops to jump through as per GP prescribing it. That alone is a red flag that it's not just something to be taken lightly. Perhaps he's done a bit more looking about it. My GP has been so supportive of me and I really like him, so I do like to cut him some slack if he's not onto everything. We'll see what transpires.
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I have been taking Gabapentin for 5 years with no SEs. It has helped the nerve issues I have with herniated discs. Perhaps the SEs depend on the dose? I have a friend that has been taking it for a decade and has none of the above mentioned symptoms. I worry though because she takes it as a pain medication without regard for the prescribed dosage. I take a "small" dosage.
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Thx schatzil4. My GP did say that with other patients he's prescribed for, it is generally tolerated very well...but I was mentioning in particular about fluid retention issues. I'm real cagey about anything thats gonna make my memory any worse than it is. It is a very frustrating thing when you keep losing stuff or get word block (thankx chemo) and just about burn your house down cuz you go outside...help hubby mo lawns.... come back in to find rooms full of smoke from a burned pot of charchoal from an element on left on high ... not good.
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Is anyone taking effexor for hot flashes? I just started with dosage of 37.5, and I'm so tired I can hardly function. Just wondered if it's the effexor...
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My PCP put me on Effexor for hot flashes and neuropathy, and a little depression. She started me on that dosage, it seemed to help with the hot flashes at first, but only a little, she's progressively upped the dosage so now I take 150 mg per day, she says we can go up to 225. I think that it helps about 30-50% with the hot flashes, and a little more with the night time neuropathy pain. I was asking her recently about cutting back on it to see if I can go lower with the dosage, but she wanted to wait for another month or so until we get my pain meds figured out. I am tired alot, not sure if it's the effexor or not as I take other drugs that can cause fatigue, as well as the fact that I never completely recovered from the fatigure of chemo and rads, so...... Sorry, that probably isn't much help. :-(
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Musical...I can sympathize about the memory loss altho mine has been "chemo brain" I believe. I don't forget major things...just the daily things like words (I am 69) and was beginning to have those events before chemo.
The friend I mentioned that has taken Gabapentin for decades, is 84 and she is as sharp as a tack. I still worry about her dosing herself tho. I am seeing my PCP today and I will ask about the drug. I have no fluid retention.
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I have been taking Gabapentin (Neurotin) off and on for 15 years, with no side effects. I started taking it for nerve pain associated with herniated discs and discovered it was a great sleep aid, a fact substantiated by my MD. With the blessings of a string of doctors along the way, I have continued taking it, on an as-needed basis, but usually 300 or 600 mg, rarely the 900, although I know friends who have taken 1200 mg a day for back pain.
Not to make light of others' bad experiences with it, but, if you read the long list of possible side effects and contra-indications of any medicine, it would scare you away from taking it.
My theory is start taking a drug, if it's needed, and stop immediately if there's a strange side effect.
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Wave...that is my thinking as well. Are you able to sleep without taking it now? My sleep is a continuing pain all through the night but manage to sleep fitfully. I am going to ask about upping my dose.
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Wave, You're right about not taking any drug once you've read the info. I decided not to take ibuprofen after reading the insert. I've heard they probably couldn't get aspirin thru the FDA today.
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schatzi14 Thx. That helps, and Id be interested what your PCP says. I see that a sd fx of Arim is weight gain and we all know that fluid retention can be a part of that. I've had issues with it on and off because of things like Amitriptyline, and winter has always proven to be better so now with the warmer days I think it is starting up again....all on its own (Great!)
My memory before BC wasnt exactly stellar. My age bracket is between 55>60 I strongly believe too much pro;longed stress can cause memory issues as well as other things like drugs. I certainly had my share of stress for years ... major things one after another, like losing my sister to BC 7 years ago. If I had word block b4 chemo, I didn't recognize it, but I sure do now. Can be very embarrassing too
. I still have some extremely stressful things I'm dealing with non BC related which all adds to the pile.Anyway just got back from GP and have here sitting beside me Nupentin 300 Made in OZ. But on the script it says Gabapentin. NOt sure when I will start these. Boy I could use the sleepiness sd fx lol. I get a lot of insomnia. 2 or 3 hrs in a night not unusual. Occasionally no sleep at all. 7 hours rare, and 8 very rare. Sleeping pills are woooonderful as long as you treat them with the respect they deserve. You do get addicted to them so I use them only when it's really necessary. I refuse to get dependant on them.
Wave thanks for your comments. I reckon youre right about all the listed effects. SOmetimes makes me wonder if they put all those to cover their butts. Maybe they should just put what it DOESNT include.... LOL it would be quicker. When you say on an "as needed basis" I'm wonderingf how that actually works for you. With all my drugs I just love that criterion. (unfortunately not for Arim though) However my packet says " do not stop taking this medicine. "
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Hi Musical
Just got a new script for the Gabapentin and he wrote I should take one in the a.m. and 2 before bedtime. He says that is not a very strong dose. I hope the 2 at night will allow me to have a painfree sleep.
I will watch for SEs very carefully and if I have any doubts, I will wean myself off them (it is important NOT to just stop the meds)...it is also used for seizures and other things. It's nothing to fool with! For me it's the lesser of two evils. We shall see.
While I was there, he shamed me into a flu shot that I am totally against. I am weak! LOL I told him if I get the flu for Xmas, I will haunt him for decades.
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Hi Schatz my script says on packet to take one capsule 3x daily, and my GP said my dose is only small too..... Oh does anyone have prefernces about taking with food or not? ..... now, I cant remember whether Doc said I could start off and slowly ramp them up to 3 or what. See what I mean with memory but I know most of us can't remember what DOc says so (this time) I'll let me off the hook. lol Anyway I have the consult on my voice recorder so I can check.... but last consult and today's, I forgot to use the voice recorder til 1/2 way through the consult.... duh
sometimes ya just can't win.Awww schatz that's awful he did that to you with the flu shot...I've heard some horror stories about those and I'm totally against them as well. Im pretty skeptical and suspicious that not all is above board with mass immunizations and suchlike, so I better not get started. Lets hope you don't get the flu out of it, and if you do maybe you could go back to GP and say "here, I've come to give you your gift back", as youre coughing and spluttering of course LOL.
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Musical...I LOVE that idea if I DO get the flu!!
I just googled Gabapentin and it gives doses of 800mgs x 3 up to 3600mgs a day so I guess our dosage isn't very strong.
I just googled the website and it says "with or without food". It never says on my pills to TAKE WITH FOOD.
Good luck to us
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Schatzi, I've been having problems sleeping for some years. The Neurotin (Gabapentin) worked like a charm until I was DX'd with BC, had to stop HRT cold-turkey and began having hot flashes and night sweats. Then I started looking for something stronger. I can't take some of the popular, highly advertised sleeping pills because of a really bad experience with one after a surgery. (Let's just say it made my depression 100 times worse...) So first my MO prescribed Rozerem, basically a high-dose melatonin. That worked for a while, then didn't. My PCP prescribed Clonipin, which I'm on now and which does seem to work.
Getting a good night's sleep is a real challenge, but my docs say sleep is so important that they've been steadily working with me to find something that works.
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