Arimidex - Coping with the SE's
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trish - I am so sad for you. Sad for all of us. I have been on Arimidex 11 months now and noticed that the last three months I wake-up with stiff joints :-( Hope this is not a sign of worse SEs to come. Still dealing with neuropathy from chemo. Our doctors underestimate how bad the treatments can be.
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Char I'm right behind you. BTW this humidity we are having really does make the neuropathy flair up. I woke up Saturday knowing it was humid as soon as I stepped on my left heel. The day before I didn't notice a thing. I think the stiffness might also be affected by the humidity. For some reason my body knows even though I am in AC.0
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Trish, so sorry you are so miserable. Definitely talk with your onc and insist that just because it's a cancer drug is no reason for him(her?) to discount your pain. Also, have you tried supplements that many here have to help with the joints? I know you don't want to take more meds,none of us do but things like Vitamin D3, glucosamine and calcium supplements have been helpful to many. You might also head over and browse the alternative thread. Even if you're not an "alternative" type of person there are probably great tips to be had.
Hang in there and whatever you decide know that we all are behind you. HUGS.
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Trish--have you and your onc talked about swithing to Tamoxifen? I know the usuual route is Tamoxifen to an AI, but women who have trouble wiht the AIs often do much better on tamoxifen. Being in so much pain that you call yourself crippled is something that needs to be treated. If you onc or PCP won't/can't help, insist on a referral to a pain clinic. If the docs are resistant to referring you, insist on a prescription for pain medication, and do not leave the exam room until you get a reasonable answer from the doc. The docs probably won't want to write a script for pain meds so insisting on that will make them sit up and take notice and "encourage" them to make the referral to a pain clinic or specialist. Sometimes we have to do stuff like this to get the attention we need from the docs who are supposed to be serving us.
Another bit of info to add to the pot--my Med Onc told me a while back that after 3 years of an AI the benefit/protection is almost as good as after 5 years, such that she does not feel uncomfortable stopping the AI at the 3 year mark if someone is having unacceptable side effects. While that info is not based on definitive research (it's based on following women in the original studies who had to stop taking an AI) it has raised the question of what is the optimal time to take an AI. I think research is being done on that now but we won't have the results for a few years yet.
I second the recommendation to check out the Alternative threads--I go there from time to time to catch up on the lastest research in that area. There was a very active thread about Vit D3 not too long ago that had links to a number of studies and reports. Personally, I am aiming for a Vit D3 level of at least 60 based on my interpretation of that info.
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Shelley~ I had that reaction from effexor. I thought it was because I was snorkeling in salt water but when it didn't go away. Plus I had other things like itchy head...I just got off of it. It didn't really help with hot flashes anyway. Plus I felt like I was numb to everything.
Have a good day everyone.
One other thing ..... did anyone notice if the side effects of arimidex would come and go. Pain in my feet the last couple of days.
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My aches, pains and stiffness comes and goes. Not sure how much is arthritis and how much is arimidex, but some of it MUST be from Mr. A!
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Hi Clare,
I am not sure I am aiming for the 5K just yet. my first goal is to be able to run a mile and if I can reach that one. Who knows. It might motivate me to keep training.
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You will get there Carole, and I don't think it will take that long. When I started cycling again about 15 years ago, I remember how hard it was to do the nine miles, and that little hill.
Three weeks later, it was easy.
You need to build cardio strength, flexibility, and also your legs, knees, feet. I am guessing here as I am a cyclist. I would sign up for the 5k anyway if able to walk that distance. I can't imagine that you are unable to walk three miles.
Don't be afraid to use energy gels either. Anything to get you moving and able to accomplish the goal. My own take that this is a self-confidence issue as much as a physical one.
So just do it, even if you have to crawl over that finish line.
You will be amazed at how great this feels. I still am proud of myself for doing the Chilly Hilly short course.....and that was during chemo. - Claire
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Trish,
I hope you'll find something that you can tolerate. Have you tried Acupunture? I jsut wish I cold have every woman I know who had joint pain, any kind of inflammation/osteo arthritis, try it. It makes such a positive difference for me.
I so understand what you're talking about, too - sitting on and getting up from the toilet was almost impossible some days. I was going to get one of those elevated seats, it was that bad. I don't want you to think that any of us minimize the pain you are having. It is SO SO SO SO SO had sometimes.
Reading what Native Mainer wrote, I can't remember if you tried Tamoxifen, but hope that's a possibility for you.
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I've been on Arimidex for four months now, and I've just (in the last week) started to develop trigger finger in my thumb.
Anyone else have this? It's really annoying, and my thumb is quite tender. It seems to be mainly in the mornings, or I wake up in the middle of the night with the tenderness.
What's the best thing to do for it?
Trish
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I have trigger finger on my right thumb middle and ring finger, I hate it I don't know what to do either. It really hurts when they get stuck. Please someone HELP
Nancy
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I've been on Aromasin for 2 years (generic ones recently). I had awful pain, fatigue at first but that's much better now--not like I used to be but trying! I've found that limiting caffeine, sugar, wine and walking, lifting weights (only 5 lbs) help me with the hot flashes and insomnia more than anything. I can tell when I've been 'bad'.
I'm guessing my onc will keep me on Aromasin for a long long time--unless it is shown to do significant damage after a length of time. Anyone know if the research on this is being done?
Nancy, I had some pretty major problems at first with my hands, shoulders and spine. I saw specialists and had steroid injections and it fixed the problems that I KNOW were caused by a combination of chemo and the Aromasin. I didn't even run it by my onc, I just made the specialists' appointments when I needed to and it worked for me. I hope you can find some relief. I still have foot and wrist pain but not as bad as it was.
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I don't know if this will be true for others, but to my amazement and sorrow (I'll explain that later), I discovered that COFFEE aggravates the joint symptoms. I knew that alcohol was a problem and quit that entirely (except for the very occasional celebration), but I so hated to give up my two cups of organic Sweetwater fresh ground and brewed Midnight Oil black coffee. I stopped it to ease digestive problems and couldn't understand why suddenly my knees and hips quit hurting. Then drank coffee again for a week and back came the pain. I didn't want to believe it, so went back and forth, back and forth, but it's true, for me at least. Stop alcohol, stop coffee and the pain goes away almost completely. Big sigh. Glad to have diminished the pain, though.
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Trisha-Anne and nwest125, sorry I can't locate the one that was active at one time but if you do a search on "trigger finger" or "trigger thumb" you should find information about what many have done to find relief. I had trigger thumb on my left hand and had to have a cortisone shot. That was back around October I think and I haven't had any problems with it since. My right thumb tried to do the same but I used thumb and/or hand splints first for 24 hours/day for a few weeks and then was able to go to only using it at night for several weeks. It has also gone away in that hand. Occasionally I get one of my fingers popping but I try and just exercise and massage it and don't really have any problems right now.
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NOOOOOOOOO!!!! Not coffee. I cannot live without it. I'm down to one cup but refuse to give up that luxury in the morning. AAACCCKKK!!!!!!!!
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Trisha-Anne,
I've been on Arimidex since Feb. 2009, so that's going on 2.5 years. I developed a trigger finger on the ring finger of my left hand (where I wear my wedding ring). One of my docs (not my onc, but my cardiologist who is a very observant guy) told me to have the ring made bigger because it was cutting off the circulation on the finger. Turns out that my finger had swollen as a result of the Arimidex. This was after about 1.5 years on Arimidex.
So, I had the ring made 3 sizes larger (left room for more swelling which didn't happen so I got a ring guard to make it a little tighter). End result: the trigger finger disappeared and the ring is much more comfortable!
Hope this helps.
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I am not giving up my coffee!!!
Seriously - I don't know if the stiffness and joint pain is leftovers from Taxol, from Tamoxifen and then switched to Arimidex or just freaking old age.
I also think I am having an easier time with this than most of ya'll but then again I live in a very dry climate. I do know that when it does get humid (rarely) that I ache really bad but it is more arthritus pain from injuries.
However, twice now in the past 2 weeks I have gone to bed and my hips are killing me like they did on Taxol. I can't lay down on either side.
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My doctor prescribed Celebrex and suggested I take it and the hydrocodone together. When I do, I feel almost human - not totally pain-free but not curled into a ball, whimpering, either. If only we could do something about the fatigue... *sigh*
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Hi All and especially Trish,
I just want to add my two cents about joint pain, etc. i have been on arimidex 6 months now; I had a really rough start with joint aches, sleeplessness and a bit of spaciness/headaches/depression. I have stuck it out, followed lots of advice from all of you here about D3 supplements, B6 , lots of exercise, etc.
I also had to work through the added complication of 3 herniated discs in my neck that chemo and arimidex brought to a whole new level as arthritis brought on by the meds, took me to the point where I had nerve damage in my right arm and hand and constant muscle spasms in my neck, shoulder, etc
That said, I knew that I was going to find a way to stick it out and it has gotten better. The major adjustments that I have made to make this journey more tolerable are 1) taking the arimidex at night - somehow I feel that I sleep through some of the worst of the joint pain each day; 2) taking valium to control the muscle spasms that I had due to the herniated discs; it did a lot for my pain and hence, my mood. I have even been able to cut back recently on the amount I take 3) adjust my diet. No question that if I eat less sugar, coffee and alchohol, I feel much better. I think that it isn't a matter of one food is wrong for all of us, but I think that if there are foods that you indulge in regularly and you have a lot of joint pain, cutting back on the amount of those foods can really help with the joint pain (this is just my experience and not medically proven, but other folks talk about other "favorites" that they have cut out or cut back on and how it has helped with joint pain).
My onc is of the opinion that for the moment he reccommends that the best course of treatment is 5 years of combined therapy: 2-3 years on arimidex and then the balance on tamoxifen. He says the jury is still out on whether to take arimidex for longer than 3 years because the big studies that are complete show that the best "overall survival" is from the group that took a combination of arimidex and tamoxifen. Of course, new reseach could demonstrate that more than 5 years is better in which case, we will be together here sharing our stories for a long time to come.
I am curious to know if other folk's onc hold different opinions about how long to take arimidex, etc. Trish, if my onc is right (he works at a major cancer center in Boston and i have looked at the studies that support his point of view), then you have already done your time on the AI and you could easily switch to tamoxifen which might make you feel so much better.
I wish you all a s/e free day! Best, Beau
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Thanks for the answers girls. I'll do the search, I'm sure I saw something on this some time ago, but didn't take too much notice at the time, as it wasn't affecting me :-)
I don't wear a ring on my thumb, so it can't be the loss of circulation on it. I actually have to wear my wedding ring on a chain around my neck as all my fingers are swollen from the Arimidex.
I live in Australia, and we are in the middle of winter here now - actually where I live (just outside Canberra) it was snowing this morning!! But it's always a dry cold and a dry heat in the summer, and my hips are killing me today.
Trish
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Now I've seen Beau's post - thanks for that information Beau!
I do take calcuim, vit d, glucosamine and magnesium which have helped tremendously with the really bad knee pain that I was experiencing. I don't drink alchohol and only have an occasional coffee and limit my sugar. Actually the se's aren't really that bad, the trigger finger thing took me by surprise, it just suddenly started. I do have problems with sleeping (I think that's the worst se) so I have to take A in the mornings.
I'm prepared to tough it out - there's still a long way to go, and if the trigger finger disappears like my knee pain did over time, then that would be even better! :-)
Beau - I've only been on it for four months - not years! I'm post menopausal, so didn't get offered Tamoxifen, but as I said - the se's aren't so bad I'd give up yet :-)
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Trisha-AnneTamoxifen can be taken by post menopausal women. Actually post menopausal women used to be prescribed Tamoxifen as standard care before there were aromatase inhibitors.0
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I know a couple of post-menopausal on Tamoxifen with great success. One because she has severe osteoporosis and the other had a lot of SE on the Als. Tamoxifen is also very effective.
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Nausea- I started Arimidex about 10 days ago. Did others get nausea when starting this? It's not a terrible one- just a little queasy type. I can still eat, etc, just feel a little bad.
I know I am still early. I am trying to start exercising a little bit more- just some walking, easy bike riding hoping to get stronger. Still recovering from taxotere (7 wks PFC).
Suggestions are welcomed!
Lisa
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I "bumped" 2 older threads on this forum that might be helpful to anyone dealing with trigger finger, trigger thumb, or carpal tunnel syndrome.
As for those other aches and pains: mine definitely come and go, and I haven't been able to identify a pattern. It doesn't seem to matter if I'm faithfully taking my calcium & Vitamin D3, or not; or if I'm getting exercise or not; etc. It just happens. My med onco told me at my last visit that it seemed most of the soreness from AI's was in the smaller joints, especially the hands and feet. That's probably true for me, although there are some days when my knees and shoulders bother me too. And, sometimes it's a whole-body thing -- everything aches.
Fortunately, ibuprofen or Aleve still work just fine for me. As I've mentioned before, I have trouble sleeping through the night because I toss and turn from sore hips and shoulders. But, if I take a couple of ibuprofen, or, better yet, one regular-strength ibuprofen and one Aleve, I can sleep fairly soundly until getting-up time (unless the temperature in the room is too hot, of course!).
I've been on Arimidex or anastrozole since June 2008 -- more than 3 years now. I'm starting to feel like an old-timer (except for JO and a few others). My SE's were much worse during that first year than they have been since then. Now, it's just a nuisance. 'Course, I'm in my late 50's, so having osteoarthritis and feeling achy (plus all that v*ginal stuff) is standard for my age even without Arimidex as a contributing factor.
I don't know what will happen when I hit my 5-year mark. My onco says she doesn't know, either. She's hoping for a clearer path once we reach that point. Me, too. My greatest concern isn't joint pain or dry skin -- it's bone density. My next DEXA scan will be in the summer of 2012; by then I'll be 4/5 finished with my 5 years on Arimidex. I'm keeping my fingers crossed.
otter
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Carol,
I had to smile, honestly when I read your post. Empathy. Fingers - are those the sausages hanging off the ends of my hands - 5 on each hand??? Almost 4 years on the A Team, and I just finally gave up rings. As for those gorgeous, they really are lovely, silver ovl shaped bangle braclets I made and wore for years - well, they're in a drawer - cuz they won't go over that paw, right or left, that used to resemble a hand.
I'm not complaining ( much!) cuz it's not lymphadema, and I don't have any pain anymore, but they ain't pretty. Still, they work. Otter, bumped, the threads.
I did trigger finger, trigger thumb, carpal tunnel syndrome at the 3 month to about the 9 month mark. Resolution: physical therapy, wearing wrist splints 24/7 for a long time, going gluten free (yes, it made SUCH a difference), massage, and acupuncture.
Beau, I don't know if you're at Dana Farber in Boston too, but your oncs sound like most of the oncs there too. 2- 3 years, some kind of a combination.
I hope I won't offend anyone - but just the thought of stopping Arimidex, feels to me like playing Russian Roulettte with 5 bullets. More than scared, but lost vocabulary to find a word.
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I agree- I have only been on Arimidex about 2 wks. It's the nausea that's tough for me. I didn't have any nausea during chemo (had aloxi and emend w/ each tx). Russian Roulette is a good analogy to the way I feel about stopping- not a good option.
Called MO office- they said to take med at night- take ativan or phenergan at night to see if it helps. They said the nausea often gets better in about a month. Is that true for those who had it early on????
I don't want to stop the med as the fear of not taking an AI is much worse than trying to deal w/ SE.
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Just had a checkup today. I have another year and my oncologist said that, as things stand now, if people's bones are holding up and they have a more high risk diagnosis, then he is not opposed going up to seven years. I am like Caerus, I really worry about what happens when I'm done.
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Lisa, I have a finicky stomach but I never had nausea from Arimidex. I've always taken it right before bedtime, though, at least from what I recall. The half-life of Arimidex is very long -- it's about 48 hours -- and it doesn't matter what time of day you take it. Once you've been on it for a few weeks, the blood levels don't fluctuate much during the day or from day-to-day. So, it's safe to try the nighttime dosing to see if it makes a difference.
otter
[Edited to add: Has anyone heard from Lowrider lately? I'm kind of worried because she hasn't posted for quite awhile.]
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HI Trisha-Anne,
I am glad (given the context) that your biggest problem seems to be trigger finger. I am sure that it is painful and hope that it clears up soon! I tried accupuncture for my neck and it did help so you might give it a try to see if it helps. If you are 4 months in (sorry I misread it originally) , then we are on a similar time line, so I look forward to sharing this part of the journey with you.
Sunflowers, I am at the Beth Israel Deaconess (another major cancer center) so I suspect that many of the oncs know each other and follow similar research. I feel sure that you must be getting the best care at Dana Farber. I went to their website a lot during chemo for information on nutrition and supplements - it was very useful.
My onc surmises that the AI fight cancer recurrence well but weaken the bones and possibly the heart,etc; whereas tamoxifen has postive effects on bones and possibly heart. Hence, if that supposition is right, the fact that "overall survivial" for a combination of AI and tamoxifen over 5 years proved best in some studies could be a sign that for those of us who has certain cancer characteristics (like negative nodes at initial diagnosis, etc) , a combo regimen is the way to go. On my bad days, I take heart that this is where I am headed - 6 months out of 3 years means that I am 1/6th of the way there. Obviously, this is all a moving target as new research may change the standard of care. Furthermore, I echo what folks say about "being scared" to go off it - it feels like a sately net. I don't know how I will feel when the time comes to stop, I just hope that I get to that point without any unpleasant surprises, etc.
Otter, I just want to take this opportunity to say that I learned so much from your posts on the "Just Cytoxin/Taxotere" thread. I was really worried about going through chemo and read through the entire thread ( a bit crazy I know, but it was my coping mechamism to learn as much as possible about this disease!). You are always so detailed and thorough in your research - it is really great that you take the time to share what you know with the rest of us. I wondered if you had any perspective on whether you are going to stay on the AI only for 5 years or consider some sort of combination of AI and tamoxifen. I would definitely value your point of view.
I wish you all a s/e free day! Best, Beau
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