For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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aelkcolb7,
What you are describing is neuropathy. It is a side effect of Taxol. I did experience that during my Taxol treatments and for a solid 6 weeks afterwards. Mine has slowly diminished, but I still feel it, weakly.
I have only been on Arimidex for 2 weeks, I do not remember reading that is a side effect, but someone else will reply, no doubt. No need to apologize for asking ?, we all are learning how to get through this nasty disease.
Peggy,
Hope you get an appt. quickly. Sounds scary but the good thing is you just started Arimidex, maybe one of the others is not as hard on the valves..I agree with you about being so weak during chemo, still in shock how hard that was on my body/mind...
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A lot of folks have complained about burning sore feet on anastrozole but that's usually after being on them for a while. I would talk to your onc about this. Sounds like its pretty severe
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All this talk about where the meds are made is very interesting and frightening. Something I had never even thought of before.
I'm still waiting to hear from my hospital pharmacy where my Anastrozole is made to confirm that it is made in India.
In the meantime I called my local pharmacy and the pharmacist told me that all Canadian drugs are made in Canada. I'm not too sure about that!
Anyway he said that they carry Arimidex made by Astro Zeneca(sp?) and Anastrozole made by Sandoz. Are they "safe"?
If so, to switch to either of those would cost me $ whereas the Anastrozole I get now is free.
To get Arimidex I'd have to pay $109 for a 3 month supply (it's $539) and for the Anastrozole I'd pay $57 for a 3 month supply (it's $279). I'm lucky in that my extended health will pay partially for brand or generic.
Is it worth it to switch though? Are the other 2 manufacturers any better?
I've been doing ok - I think my body is adapting and getting past all the initial side effects now - except I think now I might have trigger finger. The knuckle of my left index finger is really sore like I've hit it but I haven't. It hurts to bend it. Is that trigger finger? or the start of it?
I would take an advil which helps me a lot but I've got recon surgery tomorrow and I've been on a 2 week presurgical ban of advil, aspirin etc.. Didn't realize how much I would miss taking advil for the aches and pains!
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I had the sore feet too - not as extreme as what you are describing.
I still have achey "fluffy" feeling feet in the morning. But after walking around a bit it gets better.
I call it "fluffy" but they aren't swollen just feel like they are. I'm always surprised when I look down and they are normal!
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MarieK I had trigger fingers in my left hand. Still do when I first wake up but it goes away so fast that I wouldn't even know I had it but I checked the other day.
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Bosem--- sorry your doc is not communicating to you, then again I found that my docs downplayed my concern about rads and the fact that my family also has history of heart problems
I do not think we should be the ones to know to ask for stuff like a port, it should be explained to us.
Is it past the point that you can get a second onco opinion? now that you know more....
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sorry and hope all works out but do try the company who makes your med...I have a pal who was in financial problems and was able to get hers from the source...best wishes
I just got a mailing from "Casting for recovery" it is a weekend away with survivors, maybe something like that will help you though this time? Fly fishing with survivors!
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Bosum, great show. You might not want to go right to sleep after your marathon!
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GG
Yeah, I did get a feeling my cardio thought it wasn't necessary. He has me do US EKG every few years, and I think the MUGA is the same except its radioactive. Nobody thought too call him to ask. Even though MO and cardio said they knew each other.
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Hi all,
I've had three days of excruciating pains that started in my knee joints and went down into radiating pain in my legs. It has come and gone in the past but never so bad or lasted so long. Trying to work for the last several days have been torture and I have been in tears by the time I am home. Yesterday it took me 5 minutes to get my boot off when I got home--it hurt so bad and all I could do was crawl into my bed where the pain continue to throb.. Finally after trying Vicodin that did not work, I tried my last Percocet; it gave me some relief, I also called the Oncologist who said I should stop the Anastrozole for a couple weeks and see if that is causing the joint pain. However, for measure, he said he doesn't believe it is the Anastrozole. I also called my PCP for an emergency appointment. When I went in today, she said I had extreme swelling and had me do blood work and knee x-rays to see if I have Gout or Arthritis but admitted it could be the hormone treatment.. She also renewed my Percocet to relieve the pain until we find out the cause. I have a severe condition of hemorrhaging diverticulosis so I cannot not take any anti-inflammatory drugs or NSAIDS. I believe the Anastrozole is causing many of my issues. I also have cold symptoms, nightly cold sweats, hot flashes and thumb joint pain. However, it frightens me to get off the Anastrozole for three weeks. Has anyone else done this and how have it affected you?
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BosumBlues there are many programs out there if you can't afford your drugs. Some through the actual manufacturer. Are you in the US? If yes the social working at your treatment center should be able to help you.
dwill there are many women that take a 3 week break, even longer. small tumor, no nodes, grade 1 I think the odds are in your favor that 3 weeks won't make a big difference. Do express your concerns to you onc.
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HI Dwill,
So sorry to hear that you are in so much pain! I hope that they sort it out, but it really could be the AI and a break is very common. 3 months in, when I had carpet tunnel, trigger thumb and all sorts of sore joints, I took a 3 week break too. I really read these boards at that time and many people find relief from stopping and starting up again. I am now 3 years out, but i switched to aromasin after a year and a half because the joint pain was a constant challenge. For me, that has been a much easier drug on my joints - not perfect, but better.
I hope that you find relief soon. Please keep in mind that there are other drugs to try if the one you are on now is too difficult.
Best,
Beeu
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Lago and Beau, I can't believe how much better I feel today. I did not take the Anastrozole yesterday or today. Knees joints are still sore but the radiating leg pains from the knees down to my ankle are almost non-existent and I have been able to get away with using Tylenol for pain. Will not get the results from my PCP until tomorrow but I am somewhat convinced the Anastrozole is the culprit--at least an aggravator. I do believe I have arthritis already, though and I will get confirmation--tomorrow, I hope. Last week, I accidently took a double dose of Anastrozole--I started the morning with no leg pains but by that night--the pains were radiating from my knees to my legs. I guess the problem is not wanting to think the pain is coincidental. I know when I see my MO in three weeks, I will have to convince him it is the Anastrozole.
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Dwill I know a few ladies that have tried all the AIs and found that they tolerated the Aromasin best. These women were so bad that to go up stairs they had to sit on them and push up that way but on Aromasin they could walk up with minimal issues.
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lago--I will definitely keep the Aromasin in mind. Boy--it is something else when you feel like you cannot walk a few feet without falling and talking about stairs--I would have been scooting, too. Been so embarrassed at work--feeling like an old lady that can't keep up. Thankful that I have a one story ranch house-- but that high platform bed I have makes me rethink sometimes when I am stepping up on my ottoman to get into the bed. Thanks for the info.
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Hi all, So I am off of the Anastrozole (Arimidex) for three weeks. After a couple days, the pain wasn't radiating down from my knees to my ankles, however my knees are still sore. I was still grateful for the little relief. The X-rays and blood work that my PCP ordered showed and increase level of Seds and Arthritis in my knees. I figured I had Arthritis but I've never hurt so bad for so long. I truly think the AL is aggravating the condition. Last night, I noticed that one of my legs and my foot was swollen twice the size. That frightened me. I rubbed myself down in alcohol and this morning--don't know if it was the alcohol or the sleep--my leg and foot swelling has gone down So next week, I will go back and see my PCP. I hope she has some ideas since I am not allowed to take NSAIDS or anti-inflammatory drugs because of my bleeding diverticulosis. I have an appointment to see the MO in two weeks. Between the two, I hope they come up with something because I feel so crippled right now. I still think since I stopped the Al, I do feel better but still somewhat intolerable.
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Going off Arimidex after being on it a year and on to Aromisin. BP rose to 188/110. Have never had a problem with BP. I have been on a two week vaca from AIs and am so reluctant to take that first Aromisin!! BP has stabilized but is still high for me. I am having a great deal of gastro upset. Have any of you found Arimidex to cause gastro problems??
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IM pretty sure mine come from India. I am fine. some hot flashes, doesn't last long. I think my good attitude helps too. I go to work every day, went every day during radiation even if I didn't want to. I went just to get the treatments over with as they are in the hospital I work at.
Wednesday I go to the surgeon for check up, and RO for skin check up. I GOT THIS!!!!
Have a great week everyone!!!
Marla
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jlow, I also had problems with my blood pressure. I've had high blood pressure for 40 years and was able to manage it with lisonophil at a low dosage. Once I started the Al last year, my blood pressure became extremely high where I would go to the doctor and they would give me meds to bring it down before I could leave. Now, I have to take two more med to control it; so, I am on three meds just to control my pressure. Lately, I have been seeing my PCP more than my MO trying to figure out what is going on with my body. I swear I have seen her once a week for the last four weeks with one problem after another that is all side effects of the Al. The Al have cause my health to decline. I am wondering what the MO is going to do when I go to visit him in two weeks. Will let you know if he changes the Anastrozole to something else.
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Dwill, I'm one who quit Arimidex after a year of extreme joint pain and stiffness, of moving around like I was 85. I switched to Aromasin, and it has been MUCH easier on my body. The stiffness is 90 percent better. Keep that in mind as an option..at least worth a try. Everyone is different...
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Here's a darn thing... I switched to Tamoxifen after a year of trying all three of the AIs. Looks like I have most of the AI symptoms (except for hand feeling like rocks) on Tamoxifen too. I've been on this stuff only 1.5 yrs..
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Wavewhisper, I am certainly going to ask my MO about the Aromasin. I, too, walk like an 80 something year old woman and was wondering how long I am going to be able to walk unassisted if I continue to decline. I need to find something that works for me. I love going out an shopping, traveling and just being out. Don't know what I would do I was confined to the house. Living alone I would probably be extremely depressed. Gotta get a grip on this joint pain.
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Dwill, sorry to hear you are having such pain. I am finishing up my 5 years on my AL and yeap, sometimes I feel like I am 80. I too live alone. What has saved me the last 5 years is my lovely gym....mine has PT for folks so lots of people doing rehab as well as the basic physically fit folks. It perks me up and helps me keep my joints moving. Please see if you can find someplace like the gym? I even found a trainer who works with survivors and he is helping me with my balance stuff. Best of luck to you, you can do it!
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Well, I've been off Anastrozole for a little over 3 weeks, and no more dizzy spells for now. Coincidence? I think not. I'm going to call my MO and see what he says. I did two years of tamoxifen and two months of anastrozole. Hate the thought of trying yet another medication.
Got the results of my stress echocardiogram - normal. A little peeved with my GP, the cardiologists said since he ordered it that he would give me the results - well a week goes by and no word, so I call yesterday to get results from him, instead the receptionist calls me back later and says "normal" and thats it, no are you still dizzy, no do you want to speak to the doctor, no nothing. Might be time to find a new GP - I only wound up with this guy by chance, my old GP moved out of state a few years earlier, figured I was getting older and needed a regular GP instead of the walk-in clinic, so just went to the local place in town and got assigned to him, but he doesn't really thrill me.
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pat01 your GP IMO is the most important doctor. I loved my old GP but he retired last spring. He was the one who found my low D months before my cancer diagnosis. It's going to take a while to build up the relationship with my new GP but currently think she's OK. A little disappointed that she didn't think the slightly elevated calcium in my blood was a big deal, even after knowing I was just diagnosed with osteoporosis but she knew I was seeing an endocrinologist. Good think too because it looks like I might have cealic disease. Still waiting results on the parathyroid but my gut says cealic... which might be the cause of the sudden drop in my dexta reading after being stable.
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lago,
If you cannot eat gluten, or if you stop for other reasons, you'll probably feel much better and lose weight. My sisters and mother went off all gluten. None had celiac decease, but did so after reading Wheat Belly. I think that is the right title. It affected each of them differently, but significantly. I eat very little gluten, but notice additional joint pain and stomach bloating when I do. The irony I see in this is that my family were wheat farmers for four generations.
Blessed with my first UTI ever. Thank you AIs. Now understand why I was dragging for a couple of weeks.
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Thanks Doxie. Well I'm not doing gluten free till I see my gastro guy. I'm sure he'll repeat the blood test. I don't usually eat a lot of gluten so I'm sure that's why the test was just slightly over. Damn endo didn't talk to me about this.
I used to get UTI all the time till I was 21... then some evil doctor said "I see the problem. I'm going to dilate your urethra." Well the next week of peeing was hell but I haven't had once since even on AIs. I did find that cranberry juice did help but the best thing you can do to prevent them is drink plenty of water.
BTW I'll be emailing you soon. Have a few ideas I need to share.
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Doxie, as a veteran of many UTIs, you have my sympathies! Hope you got something from the docs.
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I will be meeting with my doctor in 4 weeks to discuss hormones. I'll be doing SAVI rads before then. Any advice on questions I should ask when I meet about hormones? Seems like many had some pretty awful experiences. So far, my doctor has been pretty up front with me about what to expect, but there have been a couple of surprises along the way.
If there is a site or thread I should look at to develop questions, or just prepare, I'd appreciate your suggestions.
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Sadiecat many of us don't have huge issues on this drug. The first 3 months I didn't have any SE. For about a years I was stiff if sitting for an hour or more especially thighs... then that went away. Only stiff in my fingers and toes in the morning that goes away in 30 seconds and some light hot flashes in the wee hours of the morning if I eat spicy food.
Questions:
- How will my bone density be monitored
(this drug can eat at your bones. My onc orders dexta bone scan once a year) - If I am experiencing bad hot flashes how is this handled
- If I am experiencing serious bone pain or stiffness so bad that I can't walk up stairs what should I do.
- Will this effect my heart health, cholesterol or anything else I should watch out for?
0 - How will my bone density be monitored
