symptoms worsening... anyone else have this on Arimidex?

wallan · May 2019

I have been on Arimidex for 2 years now. Energyless fatigue, insomnia and heartburn are the worse symptoms. Occasionally I get migraine headaches too, especially if I am overtired or the weather changes

But lately, my heartburn has worsened. I take Zantac to manage it. My GP has evaluated my heartburn thru taking PPIs for 6 weeks (it did relieve it) and an ultrasound two years ago. He says he doesn't know why I have heartburn and there is nothing he can do. So I take Zantac.

Anyways, now my heartburn is everyday. I am monitoring what I eat. Also, in the morning I feel nauseated to the point of almost vomitting. I have tried dry crackers to ease the nausea but this doesn't help anymore. I take my Arimidex in the morning and the nausea starts about 30 minutes after I take it, with food or not. I also get dizziness. These symptoms all ease (except heartburn unless I take Zantac) during the day usually. But now I notice the nausea is showing up if I haven't eaten for awhile.

I have also developed a dry cough for the last month or so. Its because my throat tickles now and then. I really think its heartburn irritating my throat. I do not cough at night.

So has anyone else experienced worsening side effects with Arimidex as time goes by? I have tried to get into my GP, but these days with cutbacks its getting more difficult to see a doctor. I need to make appointments way out or go to the ER. I called yesterday to get in to see my GP within the next week, and the nurse told me to go to a walk in clinic or ER because I cant get an appointment for at least two weeks or more. I find this irritating when I have a family doctor in a practice with 6 other doctors who are supposed to cover for each other.... Grr.r.....

Or should I call my MOs office? I still have that crusty mole on my irradiated foob too to get looked at. I don't see the MO until my next scheduled appointment in mid June.

Wallan

CBK · May 2019

This is an MO issue. Call and insist on an appt ASAP!

No reason to be waiting or flailing thru the system!

Good luck.

Rah2464 · May 2019

When I had a round of heartburn issues I would also get the dry cough. I also had some nausea / needing to eat to keep something in my stomach. I know these anti hormonals can exacerbate GI issues, so definitely check with your MO. Are you having any pain in your stomach area/upper chest? When I began to experience that symptom, I actually tested positive for H. Pylori That could also be something to check and is a simple blood test.

I found that eliminating trigger foods for a while (coffee and sugar for me) does help. I also eat crystallized ginger throughout the day. Helps with the nausea and calms that acid feeling in your stomach. Maybe try some ginger tea? It is a little spicy tasting but I find it very effective. The local fresh market also carries dark chocolate covered ginger that is wonderful. I hope you find some relief soon for your issues.

dtad · May 2019

Hi there. To answer question it appears that it is different for everyone. Some have side effects get better overtime and some worse. I would definitely call your MO. Good luck and keep us posted.

wallan · May 2019

Hey ladies:

I called my MOs nurse practitioner.

So, I need chest x-ray and full abdominal and pelvic ultrasound to check for mets. This is next week - not sure of day yet.

I am to take a holiday from the Arimidex for two weeks. And she is putting me on some kind of stomach drug to protect the lining. She says they give it to people on chemo. So... we shall see. At least she is taking it seriously.

She did say that Arimidex can be brutal on the GI.

Heres hoping it is Arimidex. I have a hard time believing its mets when my cancer is 100% ER+ and Im on Arimidex that I take religiously. At the same time, I worry it is mets. aahhh.

wallan

Meow13 · May 2019

Wallen, the 1.5 to 2 year mark is when my side effects became something I couldn't ignore, joint pain. My doctor switched me to exemestane I wish I never took exemestane. The weight gain and severe dry eye did me in. I never should have stayed on that another almost 2 years. I still have heartburn have to be careful of ehat I eat. Zantac is my friend. I have been off AI meds for 3 years and still feel psin at night. I also still have trouble falling asleep. Partly from discomfort, I am fine during the day moving sround.

wallan · May 2019

Oh meow13 I am so sorry to hear you still suffer. That really sucks.

I have stopped the Arimidex and I am on a PPI pantolac or something like that. I tell ya, all GI issues have disappeared. One pantolac did it.

I also feel better generally in my body. Maybe the generally feeling better is a placebo effect from stopping Arimidex. Sometimes I think the "ill" feeling I get is in my head from that drug. Who knows?

I do have a cough still. I am hoping the cough is from the wicked heartburn and my esophagus or lungs or throat just need to heal a bit. We shall see.

I am feeling a bit angry at my GP for not taking the heartburn seriously. Why couldn't he prescribe pantolac?

wallan

dtad · May 2019

meow13...I'm so sorry you are still suffering from side effects of aromatase inhibitors. I think its a myth that MOs push that all side effects go away once you stop the drug. We all need to make informed decisions about our treatments. Unfortunately that means to do the research and not solely rely on the information the MOs give us. My MO at a major NYC university hospital actually told me there were no side effects from these drugs. Thats when the conversation ended and I decided to refuse them. Maybe if she was more open and honest about it my decision might have been different.

Graciez5 · May 2019

Hi,

First time posting. I have been taking anastrozole for almost two years. I could not handle the side effects anymore. Joint, bone pain, foggy brain, and a general feeling of being lethargic and anxious. My MO changed my medicine to letrozole. That was worse. I had tubular, small, low risk of recurrence. my MO says to stay on it. My RO says he would not take it. My breast surgeon says if the side effects are to much don't take it. Very confused but I don't think I can continue with this medicine. Has anyone refused to take it and how are you doing? I read where exercise is beneficial and starting walking. Thanks

Meow13 · May 2019

I was very uninformed when I started anastrozole and exemestane, I had little time to decide. My oncologist said the drug was safe and I most likely won't have side effects. No long term risks were ever discussed. I never had a bad reaction or permanent consequences from any medical treatment before my cancer diagnosis. I was very naive. My guard was up on chemotherapy but never really researched the effects of shutting down estrogen production. The only one I knew that took anastrozole was my elderly neighbor. The only side effect she had was hair loss. And her hair still hasn't come back 10 years later.

I will never not question medication again. It isn't that bad but I would have like to have known what could happen.

Beesie · May 2019

Gracie, this is your decision; it's not up to your MO. Your MO does however have the responsibility to give you the information you need to make an educated decision.

You say that your diagnosis has a low risk of recurrence. Has your MO told you specifically what your risk of distant recurrence is, and how much the AIs are reducing this risk?

And do you mind being more specific on your diagnosis? Size of tumor, grade, obviously ER+ because you are taking the AIs, but what about PR and HER2? Node negative, I assume? Did you have an Oncotype test done, and if so, what was the score? All of these things factor into your recurrence risk.

dtad · May 2019

Hi everyone. I feel like I was misunderstood when I said you have to make an informed decision. What I meant by that is MOs are notorious for not being honest about side effects. Also with aromatase inhibitors some of the joint side effects can be permanent. I certainly was not insinuating that you guys were not informed!

cassiecanada · May 2019

Hi Gracie- i switched to tamoxifen

from lestrozole cos of potential bone issues.

Can you do same? ( my path sound

identical to yours)....er+ 100% pr+ 70%

her-... as beesy said above, these numbers

and others determine your meds...

plus recurrence. mine for mets is reduced

by 1% so i am still not sure if i might skip

it altogether

Meow13 · May 2019

dtad, I really wasn't informed. I wish I had realized that these drugs could have consequences. I probably would have taken the meds anyway because this cancer kills but I was not even questioning which I should have. My guard was up on chemotherapy but not hormonals.

Graciez5 · May 2019

Hi, my tubular carcinoma was 2.2 mm. ER+, PR -, Her-2 neg, Ki-67 low 2.5%, 3 benign nodes, my oncotype score was 15. My oncologist said my recurrence risk is 10% anastrozole brings it down to 5%. I did not ask him to show me how he got those numbers. I did have radiation.. I was numb when told I had breast cancer. I did what I was told but I do not believe I can stay on this medicine for 3 more years.

Graciez5 · May 2019

Hi again,

My MO does not want me to take tamoxifen because I still have my uterus.

Meow13 · May 2019

Gracie, I think being pr negative AI drugs are better. I wish I never took exemestane. I survived 2 years on anastrozole the joint pain reach such sn intensity I had to quit the drug. I managed 4 years total but still have side effects 3 years later. Nothing earth shattering but annoying pain at night, insomnia, and my teeth have bothered me. I had to have 2 root canals. I think my bones, in my hip weakened. I still exercise it helps.

Tappermom383 · May 2019

Wallan, I’m sorry to hear about the SEs you are now having. I find it fascinating that a couple of other women have said their SEs are worse at 1.5-2 years as that’s where I am now. I have had a dry cough (better now), extremem dizziness (also better), sore knees (I take generic Claritin), carpal tunnel (I wear a wrist brace at night). For the past three months I have had diarrhea and heartburn. My PCP is sending me to a gastroenterologist. I see my MO today (actually a new one in the same group); I’ll tell him about the diarrhea and see if he thinks there’s a connection to the anastrozole. Perhaps he’ll tell me to stop taking it for a couple of weeks to see what happens - I might just do that anyway!

Best of luck with the tests.

MJ

wallan · May 2019

Thanks ladies for all your support. It means alot.

I will let you know how it goes.

wallan

Graciez5 · May 2019

Hi,

Thank you. I am struggling with taking this medicine. I meet with breast surgeon in a few weeks and MO in June. I have a list of questions. I hate being afraid to take it and afraid not to take it.

Graciez5

DebAL · May 2019

gracie, good for you for having a list of questions! And you are so right. We go with the decision that scares us the least. Best of luck in your decision!

Tappermom383 · May 2019

So I saw the new MO today - he was OK. He did spend a half hour with me, reviewing my file. He wasn’t particularly concerned about the diarrhea - said it won’t kill me! He wants me to continue taking the anastrozole - doesn’t think this long after starting to take it it would cause the diarrhea. Told me to take an anti-diarrheal medicine (like Imodium).

MJ

mysticalcity · May 2019

Has anyone heard anything else about this newer drug TTC-352 in clinical trials??:

Preclinical studies have shown that TTC-352, which is a selective estrogen mimic, causes complete tumor regression, but unlike tamoxifen, may pose a reduced risk of uterine cancer development

TTC-352 is a selective estrogen mimic, "its mechanism is different than that of tamoxifen and aromatase inhibitors, and it has been shown to work on cancers that have grown resistant to these standard-of-care drugs."

https://cancer.uillinois.edu/so-far-first-times-a-charm-for-tonettis-initial-clinical-trial/

Meow13 · May 2019

sounds very interesting.

wallan · May 2019

yes... sounds promising

Lezza13 · May 2019

Ladies, I cannot help but chime in here on this thread. I was told by my md to take Armidex. Did not like because of GI issues and a friend who developed osteoporosis and joint pain.. I stopped the Armidex after 1 week even though I am in chemo induced menopause

I have been on Tamoxifen for almost 6 years now. Yes I have minor joint pain and those ridiculous hot flashes but I tolerate it much better. For GI issues I take Zantac btw because Pepcid AC is an antagonist to Tami and there is a long list of drugs that you can't take with Tami.

I would suggest that all of you please consult with your mds about going on Tamofien. Of course this is just my opinion

Meow13 · May 2019

Lezza, since you are both er and pr positive tamoxifen should work just as well as AI drugs. Staying on tamoxifen should be ok.

Lezza13 · May 2019

Meow13 thanks for letting me know. I figured as much. I sent a post on this thread so that other women on Armidex could consider Tamoxifen like I did. Sure the SEs of any of these drugs are annoying. I just don't like reading about so many women with joint pain still on Armidex because they are in menopause. Maybe some of those women will at least ask their Mds if they can switch. A

Beesie · May 2019

Lezza, the thing is that it's different for everyone. I've read lots of studies on these meds and I don't think that the rate of tolerance is any different for Tamoxifen or the AIs. A certain percent of women have minimal side effects, a certain percent have significant but tolerable side effects, and a certain percent have intolerable side effects that force them off the meds. I've seen at least as many women who've had problems with Tamoxifen and who have found it easier on the AIs versus the other way around.

I have also seen many women who can't tolerate Arimidex who find Femara/Letrozole to be much easier, whereas others can't tolerate Femara/Letrozole and find Arimidex to be easier.

I think the message for post-menopausal women is that if you are on one of these meds and are not tolerating it well, talk to your MO and ask to try a different med. Unfortunately for pre-menopausal women, Tamoxifen is the only option. That's great for those who are able to take it with few side effects, but not so good for the others who do encounter significant problems.

OliviaMcdon · May 2019

Hello,

I had been taking Arimidex since my lumpectomy and radiation treatment in 2015. Because of achy bones, my doctor switched me to Aromasin last November, 2018. However, I feel I'm starting feeling some depression and sporadic mood swings (anyone else notice this?). My doctor recommended stopping any hormone inhibitor for 4 weeks to see if my mood is related to this medication. I'm a little paranoid about stopping this therapy even for a few weeks. Has anyone else heard of doing this?

(I asked if we could just go back to the Arimidex for 4 weeks (or permanently), but my doctor doesn't seem to agree at this point.)

Thank uou.

CindyNY · May 2019

Wallan- acid reflux (GERD) symptoms are the obvious heartburn or indigestion, and a cough. They can do a scope to see if you have reflux. To ease it sleep with your head elevated, by use of multiple pillows, or a wedge pillow, or even raising the head of the bed. Avoid tight fitting clothes at your waist, and don't bend over from the waist - I believe it's the muscle in the esophagus relaxes and the bending allows acid to come up.

I had it bad for a while, took Omeprozole for 3 months and it seemed to go away. Now I have Pepcid complete for those nights when I eat some pepperoni pizza and it tries to kill me at night.

I hope yours goes away!

symptoms worsening... anyone else have this on Arimidex?

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