Arimidex - Coping with the SE's
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Revkat.....one thing I do is take two aspirin every night. This is because of the Michelle Holmes study (improved survival stats) and also because I am usually hurting somewhere. (See above.)
I am wondering if that could make a difference?
Can you take a hot bath to calm things down??? I certainly did that after the STP, including scrubbing the bicycle grease off my legs.
When I was hurting during Taxol/Neulasta shot, I found that hot baths really helped with joint pain.
Just some thoughts. - Claire
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Thanks for the suggestions. I have a terrific bathtub that I have never used, so now might be the time to fill it up! I'm planning to stay with the anti-inflammatories round the clock for a day or two and see if that helps. I'm also going to make my next couple of workouts swimming or biking and stay away from the running and see if that helps. Just such a disappointment to all of a sudden have these awful pains. I had to keep consciously relaxing my muscles today as the pain was making me tighten up.
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Is anyone getting really nauseous on Arimidex?
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I never had nausea with Arimidex, Rohanna. Just the creaky, stiff old lady syndrome.
My lips are better today after putting antiobiotic cream on like vaseline last night. I'm already a chapstick junkie (since chemo) so I don't think that is the problem. If it gets worse I'll definitely mention it to my doc.
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rohanna -
No nausea, but no appetite either!
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no nausea and too much appetite!!!!
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Revkat
The first 3 months on the A Team seem to throw evereything at us. By the end of the 3 month, my hands were so numb AND painful I couldn't sleep. My docs had me stop for 6 weeks, I went back on it and things were much better.
There seems to be, fo r some of us, this hideous ( don't want to scare anybody, but I found it so) adjustment period. BTW, I'm about to finish year 4, and I'm not a martyr - it really gets better.
In addition to all the good things you're doing - I would add MASSAGE, and a really GOOD Acupuncturist. I call the two, in my life, "the bookends of my well-being."
On the food side, oh, I wish my appetite was gone, but not. I think the final step that eliminated joint pain for me was going gluten free. Just completely uphill after that change. Amazing difference.
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kevkat,,suggestion ~put epsom salts in your bath water..I used to do that for my boys NOW one is a PT and he offers that suggestion to his patients..so it must be good!!!! haha spoken like a proud mom! SE do get better I have less fatigue and less hotflashes...only one year and 9 months to go!
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Hi
I've been on Arimidex for about 10 months now and have had stiffness and joint soreness, but that was about it. Now I am having some tingling on the top of one foot. Anybody else have that as a side effect of Arimidex? I can't think of what else it could be...
Thanks for your help.
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hi, mommcat - yup tingling sounds about right for some weird feelings I used to have on top of foot, and especially in finger tips. Like evereything else, if it progresses, gets too difficult, all that stff we're told, check in with your oncologist. But honest, the strangest things like "tingling" would just pop up for me for most of the first year.
Just NEVER over look anything that FEEEELS really wrong. Trust your gut. My tingling feeling seemed to happen most first thing in the morning, when I got up, or when I had been sitting for a long time.
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Thanks so much!!
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I have been on Arimidex for 4 months and about a month ago lost some range of motion in my right leg. My right hip only hurts if I move my leg the wrong way such as trying to sit Indian style or trying to sit with right leg resting on top of left thigh (like a man would sit). I have a hard time trying to get on my bike because I can't get my right leg up high enough to swing it over the bicycle seat. Also when getting out of my car I will get sharp pains in my right hip because while pushing off the pavement with my left leg my right leg is still in the car pushing off of floor board. It just seems like anything I try to do with my legs slightly apart, I have sharp pains in my right hip. I talked to the oncologist about it and she didn't seem to think it had anything to do with the Arimidex or that it could be mets. She suggested I see my regular MD about it. Just wondering if anyone else has had these symptoms.
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Nurserhonda
I don't mean to be rufe, but maybe I do. If an oncologist doesn't think JOINT PAIN can have anything to do with taking an Aromatase inhibitor, then she needs to go back to school. And you are at JUST THE POINT, after 3 months, when for some reason, the WORST hits us, it gets better in almost every case, really it does, but there is something about that 3 month point when are bodies just start to SCREAM. The hip joint is one of the largest weight bearing joints and it's "drying out" without estrogen just like all the rest of our joints.
Please go over the "check list" - your vitamin D blood level, Fish oil, Glucosamine, Magnesium, Calcium, all the stuff we've been talking about. It isn't something that just happened "out of the blue" - it's a SE of being on the A Team. Which as JO is so loving to keep reminding us - is keepng us all NED. NED. NED.
Hope you find what works for you.
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JO-5, thanks for some positive info. I am almost 100% positive that it is the Arimidex. If it were mets, I believe I would have pain when just sitting or lying still.
Caerus-Sunflowers, I am taking Calcium with Vit D twice a day. Guess I need to start taking Fish oil, Glucosamine for sure, and Magnesium. She has never mentioned my Vitamin D level, however, next lab draw, I will request one.
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I have a reconstructed left leg, knee and foot...the pain was so bad i could barely move. I decided that the meds had to be pushing me into my 80/90s, so my circulation had to be worse and I was developing old lady skin so I did hot showers and at night I used a heating balnket on low ...it worked in the winter/summer it is a light flannel blanket. I had them change my pain med to vicoprofen so I get the pain med and ibuprofen it has made a difference. Coconut oil is a good moisturizer except it melts easily...it soaks in well. I have cellulite that was not there before so I use ST IVES. It works as well as the $50 tube i was given plus I am now using glycerin soaps or castile baby soap all yr round. I think my purse is like the pharmacy bag as I take a little of everything with me! My mastectomy was interesting as I had nerve damage to my arm, shoulder and chest wall. A friend at VA sent me info on Elavil being used for nerve pain so I asked my family doc if I could try it. It works cause if I skip my nightly dose, I am miserable all day. She also thought I could benefit with this as an antidepressant but the dose would have to be increased so we did that 2 weeks ago. I have to say I am not staying in bed all weekend! It is a matter if fine tuning stuff at the lowest dose to get relief. I went through menopause once, now I get to do this again. Popsicles and my little water spray are my best friends!
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Does anyone know what is the optimal vitamin D level? I've been trying to research and I am getting numbers all over the place.
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Ruthbru
there was an excellent video posted on a thread on this board, must have been about a year ago, think it was out of the Univ. of Chicago. Seem to remember it suggested getting it to between 50 and 70. I was at 17!!! Took months and months of 4,000 ius to get it up to 46. Haven't had it tested since last summer, will know in August what it is now. I cut back dose in summer, when I get a lot of sun. Wil look at some backk threads & see if I can find that one with the video on VitD3 - it was a doc speaking at a conference all about VitaminD - in case that jogs anyone else's memory.
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Thank you. I just had mine tested and it came back 52, but with no explanation other than it was 'normal'.
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HI,
Europe tables of orientation value are 18-142 nmol/L, but I read BC patients should have 60-80.
Greetings
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ruthbu on my vitamin D results it says reference range 18-72. 1.5 years ago I was in the single digits. As of December I was above normal at 79! I take a total of 800 IU of D & 1000 IU D3 combination a day in suppliments.0
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I must say that walking is helping a lot. I have not had to take any pain meds since I started last week. I really want to get into running so I started with 2 10 second sprint while walking a mile. I am now up to 2 - 30 second ones. And try to increase it every walk that I do every other day and doing weight training on the other days. Starting with small goals is helping instead of what I used to do and have a goal of running a marathon , lol. Good luck to every one dealing with side effects.
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Carole...... Great work!!! I find telling everyone what event I am doing, or even better, having them donate to charity on my behalf, works wonders for keeping me on track while training.
I think your muscles will rebuild quite quickly. Important, as they support joints which makes me wonder how much of the joint pain is from muscle atrophy.
You can start with a 5k or 10k to get you back in the swing of things. Take a look at what Everyminute is doing.
On top of the fitness, you will also sleep better and all the other benefits. I cycled through chemo, and got an endorphin rush even then. Made a major difference in how I felt.
I did need a lot of ibuprofen last summer as still aching from Taxol. And I just used for the Seattle-to-Portland as I banged up my ankle about three weeks before and cycled with an ankle brace.
Good luck with the training!!!! Which 5k race are you doing???? I think you should be fine to do something in September, and it will keep you moving. - Claire
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Help. I have been taking Arimadex for almost 4 years and have become a cripple.
I can't get out of a low chair or toilet without pulling myself up, and now walking (which I did for exercise until 4 months ago) is almost impossible. And I have to pull myself up the stairs.
I tried Aromasin which gave me diahrea, and femara which costs too much. Does anyone else have these terrible symptoms? I was Stage one lobular and my onc. said I could quit the drug now after the four years. I ache all over, hands, shoulders, neck, but this inability to walk or get up is horrendous. Help ! Trish in pain
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Trish
I can only tell you, that I know one of the AI's is part of a clinical trial, after the 4 year point, to see if a treatment of 9 months of taking it, and 3 months off compared to 12 months steady, as we do now, is effective. It's a randomized trial, and I'm not willing to draw the card which says 5 more solid years on it. SO...there must be some kind of a general understanding within the medial community, that women MAY have a LOT OF TROUBLE after the 4 year mark. I don't have any details about the trial, or how to get on it.
SO, for some of us, the cumulative effects seem to be more difficult than for others. THIS IS no consolation for PAIN, just wanted to let you know you are definitely not alone. Definitely.
Have you read through this thread, and found anything other women are doing which you haven't tried yet??? When I was nearly as bad as you're feeling, ACUPUNCTURE came to my rescue. And it really was a rescue. I've been GLUTEN FREE for along time now, but that intervention was very important at reducing joint pain when I did it abot 2 years ago.
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Hi ladies,
I'm new to this thread but am now in the throes of what I think are SEs from Amrimidex. I am intrigued by your suggestion to go gluten free. Any suggestions on how to start, a good online resource....
I also am experiencing quite a bit of nausea which I think is another side effect. Nothng OTC seems to work for either of these symptoms. Any suggestions welcome.
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Trish, Femara has recently gone generic, so if you felt better on it you could ask your doc about switching back. The cost should have gone down a lot. I know when Arimidex went generic people found a wide variety of prices so shop around.
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Hi gals...thanks so much for your replies...I am seeing my oncologist this week and will discuss the 3 months off. I'm afraid of this crippling situation being permanent. Have been doing pool aerobics
but miss my walks and getting out of chairs etc. didn't realize the drug can dry joints out. oh brother.
I take Aleve in am and pm and baby aspirin too, but can't load up on too many drugs. I'm going to ask my regular doc for an x ray of my spine to see if anything is wrong there, but wonder if any other
of ladies in our position have been so crippled. Thanks,
Trish
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trish
I think that "3 month off" is a part of a clinical trial, but that's a LONG LONG LONG way from saying it will work, or be effective. I keep hearing JO-5 words " NED" - and that's how I want to be too. So I'll keep taking it, probably for years & years....after the 5 years mark next year.
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Thanks Caeur-Sunflowers....when my onc. told me I could quite now after almost 4 years, I told him I didn't want cancer to come back and would try to stick it out, but now that I can't walk, have to
pull myself up stairs and don't want to even think how low the toilet is....impossible!! I am so
miserable, depressed since I can't stand up from a chair and when I do I have to stand there for a minute to let the pain pass... and think quality of life might be better without this drug, wondering if these SE will go away when I go off.
My onc. suggested I take Cymbalta, but I don't want ANOTHER drug, and he poo pood the idea of side effect, saying..."well it's a cancer drug". As far as I'm concerned, this is like chemo forever. I'm just miserable, depressed and hating life as it is now. I used to be an athlete until this came along. One of my friends couldn't stand the Arimadex and her onc. gave her Tamoxifen and maybe she was the smart one. I can't imagine any worse side effect that what I have.
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You should definitely explore different options if you are so miserable!!!
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