Arimidex - Coping with the SE's
Comments
-
My rx is for 1 mg-that seems pretty small. Anyone else have a low dose rx?
0 -
spunky, 1 mg isn't a low dose. That's the standard dose everybody takes.
otter
0 -
Thanks, Otter.
0 -
1mg. is the normal dose.
0 -
yes 1mg is what I take as well
0 -
I have been lurking but not posting much. Started taking Anastrosole about seven weeks ago. Sleep with a brace on my left hand (side with breast cancer) but still have a LOT of pain in the joint where the thumb joins the wrist. The insurance refused to pay for a prescription topical medication so I have been taking Advil when it gets unbearable. The right thumb hurts sometimes but not always. Some days the left is so bad I cannot pick up anything without pain. Yikes, not liking this medication.
On the nail front, I have been using Curel on my hands/nails since after chemo. The lines are growing out and I find that applying a small amount on each nail and working it into the cuticle is really helping with the dryness. Hope this helps someone.
0 -
kdajay, I, too, have the problem with my left thumb hurting in the wrist area. I believe it is DeQuervain's syndrome and there is a thread about it on this forum. If mine gets worse, I plan to see an orthopedist. I saw one five years ago for trigger thumb and the cortisone shots helped a lot.
0 -
perky - I've got the fingernail issue too. They just shred. Nothing I've found has helped, so I've been keeping them trimmed down to nothing. Even then, they find a way to split at the tops. I personally think it's an SE as I've never had this before. Makes sense to me that it's related to dryness.
0 -
I found you guys!! My onc gave me Arimidex today after going over my EMR etc but i cant afford to forget stuff,I work for the feds and do estates & trusts and they monitor all the computer screens are captured and all the phones are tapped and if I screw up anything they will fry me like a french fry. I also already told the moron dr that I am on Actonel for my osteoporosis and I understand the AI cause bone loss. He says it causes hot flashes and weight gain. Sounds like a real "fun" pill. Cant wait to start it. The aches in the joints OMG are you kidding me? I dunno if I can take that junk. I think I should take Evista but it might cause a blood clot,just glad I dont need chemo or rads,thank God or whatever. guess i am in ur club whether I wanna be or not. Should I get a second opinion?
0 -
Layla - not ALL women have SE's on Arimidex
And, remember, there are so many ways to deal with any SE's if you do have them - all in all, MUCH better than a reoccurance. Truly. Make sure you have a bone density test as a baseline when you start. After 4 1/2 years, I would do it all over again, and probably will have to ( onc wants to keep me on it past 5 years) to stay NED.
0 -
My weight had increased from 60 to 75 kg during administration of Arimidex for five years. Since March,2011 , it is discontinued as per my Doc,s advise. Now I am NED. I never have bone density test. Whenever I go for my routin follow up check up every year, I am only advised for mamogram test.
0 -
This is a very powerful tiny little pill. I have only been on it since November and my nails are a mess, I am noticing I have old lady skin on my arms and legs. My skin is really dry.Thank goodness! My weight has not gone up (so far) and I am able to do Zumba and that helps with hot flashes and joint pain.
I have a lot of friend that are older than me and now I am understanding them better. Like how they are obsessed with hand cream and night cream. This seems easier than Tamoxifen was so far...
0 -
I have skimmed through pages of messages and everything is jumbled in my head. Finished Chemo, than a single mastectomy with everything clear. Started on Armidex (generic) a little over a month ago.
I already have joint/muscle pan from fibro and arthritis and back problems, etc. Am basically semi handicapped already. Am osteopenic but I've read some things about the poor quality bone built by the fosamax type drugs, and that the actual record of breaks is the same whether on or off the stuff. I'll ask my primary care doc if I can skip the bone scan. She's a good doc, but not very good at listening to what this patient wants.
Anyhow, the reason I started reading the thread is because I'm having a lot of swelling. My right leg looks like it has lymphadema. The left is swollen but not as badly. Both worse at the knee and below but I'm just starting to realize that I feel swollen all over. My face, my hands, my stomach (I look pregnant.)
I already had hot flashes. They aren't worse, but I get this awful nerve type tingling all over my body when stress causes a hot flash. I'm on neurontin for nerve pain from the mastectomy. This tingling feels like a nerve thing.
I type a lot because I am limited in what I can do and have been enjoying working on family history. Have to sleep in a recliner since surgery because my lower back screams if I sleep in the bed. I tried the bed twice and the leg swelling is down in the morning, but gets bad again during the day so it's not worth the back pain from the bed. My hands/fingers hurt a little from typing and feel a little numb. Do you think a wrist splint would hellp that? I don't want it to get worse.
Doc had me try lasix but it doesn't do anything about the swelling. Also did a bunch of blood tests for kidneys/etc and an ultra sound to make sure there isn't a blood clot in the leg. That was before the swelling seemed to spread. I feel a bit like a balloon with arms sticking out.
I saw a lot of recommendations for side effects and have forgotten most. (chemo brain). Is there anything that can be done to help the swelling get better?
If you read through this rant, thank you. I just rambled mostly. It's just somehow helpful to talk about the side effects with others who know what it's like.
Peggy
0 -
Peggy, I would ask your MO if he /she can try another ALS and see if that is it. They might also suggest going off for a brief time and seeing if that improves your swelling. Do you get up and move at least every hour? If you can take a fifeteen to thirty minute walk that does help. Elevate your legs whenever possible. Good luck
0 -
This little pill can cause Lymphedema. I read it on their site. It is not a common one and I too wonder if it has played a roll in my leg LE. Even my daughter has noticed how big my legs have gotten and she is only 9. Question your Dr. Fluid pill will not do anything if it is LE. You need to see an OT specialized in LE and get them wrapped. I hate wearing the compression on my legs but it does help with the swelling.
0 -
Thanks for the responses. It really looks like Lymphedema, especially on the right leg, though the left is swollen also. I thought about asking for another ALS, but it seems to me they all have bad side effects and the armidex seemed a bit less so. If there is a rare side effect, I'll get it.
My primary care doc said maybe all I could do was keep my legs elevated. But who wants to live that way, and it takes hours for raising the leg to make a difference. Then it's right back again.
After my hip surgery I got a bad compression sore on my foot from the stockings, so I'm a bit gun shy about them. My Onc is clueless about all this. I've noticed she hasn't been up on research and that makes me nervous. She is good, but limited because she doesn't keep updated.
I guess if it gets worse I'll just call the lymphedema clinic mself. None of the docs even thought of that. I mentioned that it looked like it, but none knew it could be a side effect so didn't listen. I'll also look again at the alternative ALS meds.
Thanks again for replying,
Peggy
0 -
I have not taken Arimidex, but have taken Aromasin. I took it for just a little over three months, and I think if I had kept taking it, I might have been a goner by now. I was in such agony and pain, that I could barely get up from a chair or sofa. I started eating ravenously while on it, and gained 12 pounds right away. I finally went back to my Oncologist, and she said I should never have waited so long to tell her how badly I was feeling on it. She put me on Tamoxifen, and so far, I am doing much better, and can move around again. Lost about 5 pounds so far. Have been on Tamoxifen for over 3 months now.
Then, the oncologist told me that there is only a small percentage of difference in the Aromatase Inhibitors compared to the Tamoxifen, and that she would be just as happy if I could take the Tamoxifen. I am one that looks for 'quality' of life, rather than 'quantity', and I refuse to hobble around like I am 90 years old, if I don't have to.
Make sure you all tell your oncologists the side effects you are experiencing, and try to change to a different Aromatase Inhibitor, or if possible, use the Tamoxifen. Worse case scenario, you could be like my best friend, who will not take anything, as she already has tons of health problems, so she is just trying to eat sensibly, and keep her weight down, and hope the BS got all the cancer out. She did have radiation, but since then, has had no medications.
Hope you all feel better. Terrible that so many of us have so many side effects from these drugs.
0 -
Weird question - does Arimidex contribute to gallstones? I had a horrible episode this evening: vomiting and diarrhea, shaking, sweaty, dizzy. I was really afraid I was going to pass out. After I was fairly sure I was done vomiting, I dug out the 2 yr-old Zofran I had left over from chemo and it helped. I was able to lay down and take a hour-long nap.
Now, granted, my father and his mother had gallstones, so it's been in the back of my mind that I might develop it, too,someday. I remember Dad's attack that led to him having his gallbladder out, and it was just like mine tonight. So, is this likely to be my family medical history playing out, or is there any correlation between Arimidex and gallstones? I'll call the doctor in the morning to be on the safe side. And my liver/gallbladder area feels tender.
0 -
riley702, Did your symptoms start after a meal? My attacks usually started out that way. Very nauseous, pain on right radiating to the shoulder. Hope you get anwers soon. Good luck.
0 -
I had a small bowl of Cheerios about 30-45 min. before.
0 -
3Bells - Peggy.
Is it possible to find another Oncologist. I see you are in MI and there are Universities there where you moght find a new Onc. I know you said she was good, maybe you meant, nice? Your Onc being up to date could save your life. Just a thought that came to me because I have stayed with bad service providers all too often because I felt inappropriately "loyal" when it wasn't warrented by their behaviour. Positive wishes for your good treatment
Ginger
0 -
Ginger, thanks for replying. I have just been doing research on armidex and the others. I'm 71 years old. After only a month I have bad SEs. Now I find out they get worse as time goes on.
Between nerve pain from the mastectomy, other disabling problems, it just isn't worth it. I don't want a recurrance, of course. But it seems if there is a rare side effect to a med, I'm the one to get it and at this point a recurrance is looking no worse than the options.Right now my skin is crawling with itches. I forgot to mention that one. I am stopping the armidex and going to try make an appointment at the Block Center in Illinois. It is not quackery, but integrative. Hopefully I can get an appointment and advice I'm comfortable with. After her non help/ non concern with this leg swelling problem I'm done with the Onc I had.
So I'm off now to look up the Block Center website again and try make an appointment. Thank you again for your concern and God bless you!
Peggy
0 -
I had my gall bladder removed - made life a WHOLE LOT BETTER!!!!
Also have had problems with swell in my cankles - notice it if I eat anything with a lot of salt. BUT, it can be a serious symptom of many other issues - so I wouldn't just attribute it to an AI. Really think that's one of the SE's - if it is one - that has to be checked, and considered seriously.
Notice slight swelling, expect it's going to be for as long as I'm on A, in my fingers - don't wear rings anymore.
0 -
hi 3bells,
I think that you are doing the right thing to take a break and seek a second opinion! I have a wonderful onc, who has taken all my side effects seriously and treated them. My first 3 months were really tough - I have 3 herniated disks in neck that went nuclear from the arthritis that arimidex caused, I had carpel tunnel in both wrists, blues, insomnia, achy joints, etc) He and I decided that the most importand thing was keep moving and try to stay positive so I took various medications - pain pills, sleeping pills, muscle relaxers at various times to help me get through the adjustment. I also took a 6 week break at one point because my onc said that 55% of folks who take a break or try another AI have much fewer symtoms when they start back up again. I am now a year in and take way fewer meds that at first and I feel so much better. I also played with my diet and now have almost no alchohol, much less dairy and wheat. All in all, I am glad that I had a supportive onc to help me figure out how to re-gain a reasonable quality of life and still stay on this medication.
I continue to notice that I have mild swelling (not like yours) in feet and hands too. I have started taken 1 claratin per day (plus continuing with one NSAID). Also, please be sure to get your vit D checked. My onc has me taking 1200 units of calcium per day and 1000 units of Vit D (it is supposed to help with bone loss and possibly bone pain).
Quality of life is so important and you should not have to suffer like you have been. Good luck in finding a more compassionate and competent onc! Best, Beau
0 -
3bells-I am so sorry you are going through so much. Things change so quickly you absolutely need a doctor who is up to date on what is going on. I live in IL and recently attended a cancer support program at which Dr. Block spoke for over an hour. Although I have no personal experience with The Block Center, it looks amazing and the integrative approach makes perfect sense.
What ever you do, I hope you get relief from the pain you're going through. Sending prayers and positive thoughts.
0 -
Ditto what Beau said about taking the break frrom an AI. I had to stop for about 6 weeks at the 3 month point - and, was one of the 55% who was fine, well, much better, when I started again.
0 -
The scary thing about the AL is that side effects can increase down the road, many have had to have surgical corrections because of them. I definitely need encouragment and help in setting up a good nutritional program since I have no energy or motivation to do it on my own. Until after surgery I was big into healthy nutrition.
I did ask my primary care doc to check my vitamin D levels when she did the other tests to rule out problems that could be causing the swollen leg. They said the results were normal, but I'm not sure what normal means to her. At least I knew I wasn't taking too much in my supplement. She is, I think, a fairly good medical doc, but not into nutrition either. So few are.
I'm waiting for a call from the patient advocate at the Block Center. Thanks so much for your replies!
Peggy
0 -
Um, ... what's "ALS" (from posts on previous page)?
0 -
Has anyone been given the choice of ooph vs. lupron injections? I keep going back and forth, but need to make a decsion. Appreciate any input.
0
