For Arimidex (Anastrozole) users, new, past, and ongoing

Jennie93

Suladog, do you have any SEs from the Prolia? I too had a baseline bone density test right before starting anastrazole. And I too was found to have osteopenia. Which surprised us all because I'm only 52, lead an active life, had only been in menopause for about 2 yrs at that point, and had been on tamoxifen for a year and a half, which is supposed to be good for your bones. Go figure. Anyway, my MO suggested Prolia too, but I declined, for now anyway. The SEs of biphosphonates scare me big time. For now I'm going to increase my calcium and exercise, and pray the anastrazole doesn't wallop my bones too hard.

Who am I kidding, I'm sure the insurance would never approve Prolia anyway. I heard it costs $6K a shot.

lago

I've had 2 shots of Prolia. No SE although they warned me I would. Hope it's working.

Suladog

Jennie,

no problems at all from the prolia and that's coming from someone who had 5 yrs on Fosamax 10 yrs ago. I really read all I could about prolia and felt it would be a good move to build bone and also having read the other stuff it helps with. I'm very active and plan on staying that way if I possibly can.

My insurance covered prolia, and I was told as long as I'm on an AI it's covered

PontiacPeggy

Gaye-Doreen, I've been on Anastrozole for 9 months with no problems. Give it a try. Many of us do not have problems. The women posting here with SEs are looking for answers - which is totally understandable. Those of us with no SEs don't necessarily feel the need to post since we don't need answers.

HUGS!!

PatRN10

Peggy, as a potential AI candidate, that is very comforting to hear!

PontiacPeggy

Pat, I, too, read all the posts here before I started anastrozole. What I came away with: Some people have SEs. Some people have REALLY BAD SEs. And most people do just fine. What tipped the scales for me was meeting up with a high school classmate before I started anastrozole. His wife is on anastrozole and has been for several years. No problems. Now I personally KNOW someone who is just fine on it. Then when I talked to my MO about SEs and what we'd do if I had them, he said "why would you assume you are going to have SEs?" True. When you take an aspirin, Claritin, Tylenol, do you think about SEs? I doubt it. So I went in thinking I'll be fine, and, luckily, I am.

HUGS!!

ruthbru

I will chime in to echo Peggy. I did the 5 years with few problems (none major), and a couple things that helped me to have a positive attitude: I had several local friends already on it and they hadn't experienced any horrible SEs (one gave me the most important advice to 'just keep moving'), and the other thing was that I had several other friends with kinds of cancers for which there is no future prevention medications after the initial treatments, and they would have given anything if there had been something they could have taken that would really reduce their recurrence risk.....they were envious of my having that option (one of these ladies is alive and well today, but the other had a recurrence and died).

Pswanson82

Here is an update on my chapped, swollen and itchy lips. I called my MO and she had me stop taking Anastrozole for 2 weeks to eliminate it from the reaction I'm having. After 2 days off it now, I have no tingling or swelling sensation in my lips. They are healing now and not getting worse. I may be allergic to something used as a filler. I will wait out the 2 weeks and we will see what she will recommends next.

P

proudtospin

oh gee P, hope you figure out what the reaction is and how to deal with it!

PontiacPeggy

PSwanson82. It certainly could be the fillers. Many of us have found that the generic manufactured by Teva causes fewer reactions than from other manufacturers. Request it when you go back on. Or perhaps you can try the brand name. I use the Teva and have had no issues of any kind.

HUGS!

jeanelle

I have to echo what Peggy said about the SE with Anastrazole. I've been on it over a month now and I can tell you that I have much fewer side effects than I had with the tamoxifen. The only thing I have seen so far is worse joint point and the hot flashes. The hot flashes for me are much worse at night. My MO gave me gabapentin to take to help control them at night. I still get them just not as bad and I'm able to sleep better.

Jeanelle

bythemarina

Hi all you brave women! I truly am sorry that you are all here because of breast cancer but also grateful to read your stories. You are all in my prayers.

I have been diagnosed on 19 June 2015, lumpectomy on 7 July 2015 and due to start radio therapy in 2 weeks' time. My Oncologist suggested hormone therapy and mentioned Tamoxefen, Aromatise inhibitor or Anastrazole. It will take me all night and day to read through all the posts but I get the idea that some people have SE's and others none. At this point in time, after having done some research on hormone therapies, I'm inclined not to opt for hormone therapy.

Before my diagnosis, I suffered severe pain in my left shoulder and neck. An MRI of my neck showed various problems, including a lesion on C5 and T3. The neurologist is not concerned about it and said it was not the cause of my pain. Meanwhile the pain worsened to the point where I barely slept 2 hours a night and my left arm was useless. Getting up in the mornings were a nightmare, not to mention getting dressed. The Shoulder specialist diagnosed a frozen shoulder. Cortisone made NO DIFFERENCE. The pain just got worse. At that point I asked my GP for a reference to have mammogram and got the shock of my life. A bone scan showed Degenerative disease in left shoulder, increased uptake in sternum and otherwise normal age-related degeneration.

Anyhow, in 2012 I had a knee op. At that point I could not get out of bed or walk. It was the most excruciating pain. What I'm getting at is that if these hormone drugs make joint problems worse, I am too afraid to try any.

I'm here because i would like to keep my options open. Any comments or suggestions or advice are welcomed!

PontiacPeggy

ByTheMarina, Of course it is possible that Arimidex MIGHT make your pain worse. And it is also very likely it will do NOTHING. You don't know until you try. Most of us feel it is worth it to try and to stay on AIs (even those with SEs) because they help keep the cancer from coming back. I know that's my goal. That's why many of us endure chemo - it kills it! I have had no problems with generic Arimidex.

My MO said why would you assume you'll have SEs? And I remind you that you don't stop to think about the SEs of aspirin, Tylenol, or Aleve before popping them - at least I sure don't. I know there are SEs but I figure I won't have them. Same reasoning for the AIs and Tamoxifen. Of course, if you have a condition that the drug information says you shouldn't take it, then don't. But don't write them off before trying them. You can always stop them, try a different manufacturer, switch drugs. But you won't know until you try.

End lecture. Sorry. I feel very strongly about this. Even ladies who post here with really awful SEs would like to stay on them if they could. Some have found that Cymbalta alleviates their SEs. TRY THEM!

HUGS!!

gypsyjo

bythemarina - I am one that has some side effects, but you have nothing to lose by trying it. It might be painfree added insurance for you against cancer. You can also do it like me, refilling my subscription month by month. The side effects will go away if you decide to stop. It really is worth trying.

Reader425

I'll chime in to say I've been on Arimidex for almost 5 months with no real SEs to complain about. And I've had Systemic Lupus joint issues since I was 26. So far so good. I've found it worth trying and am happy to be on something that can help prevent recurrence. Best wishes with what can be difficult decisions.

Suladog

Bythemarina,

I'm here to back up what Pegg said. I was terrified to start anastrozole aka Arimidex but Pegg reassured me that many people do just fine, as it turns out that was the case. I've been on Arimidex now for 3 mos, no problem.

Has your doctor mentioned doing any sort of chemo?

Chloesmom

My brother had mets to the bone that hurt more than my SEs. I will keep taking my AI to keep the cancer away

PontiacPeggy

Chloesmom, I think that says it all.

HUGS!

Spookiesmom

Agree Pegg!!!!

PontiacPeggy

My philosophy is TRY the AIs (or Tamoxifen). You have more to gain than to lose. Even if I turn up with SEs in the future, I will do all that I can to remain on them because they are helping me have a future.

HUGS!

Thereselm

What are S/E's ??? Sorry, is it side effects

Jerseygirl927

I am trying to get the prolia shot since I have had two fractures before the breast cancer. The fozamax which I was on for about 8 years gave me a problem so I have been on protonix for the acid reflux the fozamax gave me, of course the fractures are a result of the GERD inhibitor. Now with the chemo done, I am hoping that I can get a shot to strengthen the bones after all the SE's from chemo. I will have to check what side effects prolia has? Anything to worry about?

PontiacPeggy

JerseyGirl, I have had acid reflux for years. I took Prilosec and Nexium. After it came out about the damage it did to your bones, I went to Zantac and have since migrated to Pepcid. It mostly takes care of the acid reflux even with the Fosamax. Of course, if I would avoid the triggers I'd have fewer problems but I hate to give up my one cup of REAL coffee and my one glass of wine. Today I paid for overindulging (that 2nd cup of coffee yesterday was sooooo good). Miserable all day. I've gobbled everything that could possibly help. Finally tonight I feel like living is okay. Am I the only whose acid reflux often centers right between my breasts? Argh.

HUGS!

Jerseygirl927

my acid reflux was always center chest, I have to say that since having chemo, my reflux is better, so I am using tums for that occasional slip. But it's been better so I am not going to take the protonix anymore, unless it comes back with a vengeance, besides they say coconut oil held and I have switched most of my cooking food over to that and help myself to a tsp full daily, which I believe helps.

PontiacPeggy

That's wonderful, JerseyGirl927, that your acid reflux has mostly gone away. Chemo is a pretty drastic way to cure it! I hadn't heard about coconut oil helping. I'll have to explore that. I seem to feel better this morning. No coffee though - how will I manage???

HUGS!

ruthbru

Remember that regular weight bearing exercise (walking, running, dancing....things that pound the bones) and lifting light weighs strengthens the bones. Eating a serving of dried plums (prunes) actually builds bones.

Mommato3

I've been on Anastrozole for just over three months now. In the beginning I had some hot flashes and stiffness when I first got up in the morning or after sitting for a while. Now the hot flashes have gone away and the stiffness is just occasionally. I even had my hormone levels checked last week because of the hot flashes disappearing, a little spotting, and the stiffness improving. The Zoladex is still doing its job of keeping me in menopause. I'm scheduled to have my ovaries/tubes removed in September. Do any of you know if the hot flashes will come back after surgical menopause vs Zoladex? If you were already menopausal, did Anastrozole cause hot flashes to start again? I'm just trying to get an idea of what to expect. Thanks

Mommato3

I forgot to add that I was running and/or walking 4-5 miles every day. The exercise probably helped with the stiffness

Chloesmom

my reflux is silent. Gives me post nasal drip not heartburn. Wonder if one of the over the counter meds would control it. I hate taking ranitidine

PontiacPeggy

Try famitidine (Pepcid). My PCP thinks my postnasal drip aggravates my acid reflux. She's tried several allergy meds. None work on my allergies as good as Benadryl but I was getting sleepy. I'm taking Claritin which does help the acid reflux more but is less effective on the allergies.

HUGS!