Varying side effects or formulations?

[TammyCross]

I started on exemestane in September. Since then, the side effects keep morphing. The first month it was pretty good. My mouth was really dry, odd. I had some fatigue. (I wasn't taking anything else.) The sore joints I had on anastrazole weren't gone, but much improved. I thought this was going to be easy. The second month started out good, but lately, I have had non-stop diarrhea and some insomnia and depression. This is hard to live with. I thought the side effects keep evolving.

Then I thought maybe it was the formulation. I have gotten the med from three different pharmacies, which used three different manufacturers. I think I tossed the first one, from my neighborhood Rite Aid. The second I got from a small pharmacy, and it was made by an Indian pharmaceutical. The current one is made by another company. I looked it up, and it seems there are 19 companies manufacturing exemestane. Each got FDA approval in different years.

Supposedly, one can look up the formulation -- the extra ingredients -- in the package insert. I have a 90-day supply of the last one, unfortunately, from a mail order pharmacy. I don't think I kept the package inserts. I have tried to return medication from the mail order pharmacy once before so I could try the brand name (that didn't help; in that case, no matter which one I took, I had the same side effect so it must have been from the active ingredient). It is complicated and difficult to return so I can buy a different brand elsewhere. I don't even know the manufacturer of the first one, and am not sure how to find out. I am not sure that looking up the ingredients would help, since I wouldn't know what they are and might do.

I found a like to a national website that is supposed to give the ingredients of each one, but it was a dead link.

Any ideas? Anyone experience these side effects with exemestane (diarrhea, depression)? Has anyone tried switching manufacturers of the same medication and had better results? Tried to look up the additional ingredients?

I haven't even started the CDK4/6 yet, and am dreading adding more stress on my body when this one is kicking me. What is frustrating is that it was tolerable at first. Did it just take time to kick in?

[Silver126]

The manufacturer (at least in Europe) is Pfizer and the commercial name is Aromasin. I got this one, never use “generic” medicaments

[TammyCross in reply to Silver126]

Yes, Pfizer makes Aromasin; the others are generic exemestane. The problem is the brand name drugs cost more, and exemestane is not inexpensive. I think I will have a problem with insurance coverage of Aromasin. Also, mail order pharmacies charge less. I think there is a pharmacy team that handles all the prescriptions (at least funding of them) at my hospital. Maybe I should try to start with them.

[Hopeful4Cure in reply to Silver126]

Hi Silver126, I also an in Europe and just starting everolimus Accord out of Barcelona and I will be taking exemestane Normon is the maker. Are you still on it and how are things going?

[Tam-56]

I wish I could be more helpful to you. In researching one of my meds the pharmacist was very helpful researching various ingredients contained in my meds when the drug company changed manufacturers. I hope your symptoms resolve and you are able to tolerate this new medication.

[TammyCross in reply to Tam-56]

Good idea. I wonder if I can get a pharmacist to help. Not sure which one. Especially since I mostly use a mail order pharmacy. I never see or communicate with an actual pharmacist. Maybe I can go back to Rite Aid, in person. The pharmacists there are so harried, so busy, it is unlikely I could get one to talk to. Rite Aids are shutting down so the pharmacists are increasingly squeezed at the open ones.

[awesome4ever]

So sorry for all the issues you are experiencing. I have been on Exemestane with no side effects at all since February of this year. I don't have to deal with mail order pharmacies etc as in Canada our drugs are dispensed directly from the cancer center pharmacy. However they often will use generics to cut down on costs. That's the case with my Exemestane as well and the manufacturer of mine is Teva and it is manufactured in Canada. I have used their generics of various drugs over the years without any issues. I will also say that any of the pharmacists at the cancer center ask about side effects each time we pick up a refill so you always get that personal touch I guess. If you can access that brand you might be able to determine whether it is the actual drug or an additive (especially used in drugs manufactured in certain countries) or if this drug is just not for you. Good luck.

[TammyCross in reply to awesome4ever]

Just saw the NP at my oncology practice -- who is far better to deal with than the oncologist. She confirmed that my easy first month could have been due to the generic I was on then. I am going to have to find out which one it was from that pharmacy, then call the mail order pharmacy and ask if I can have that one or Teva (I think it might have been Teva). If not, I will move the prescription back to Rite Aid. The generics have different costs, and she thinks the mail order pharmacy is going with the least expensive for them.

[awesome4ever in reply to TammyCross]

I hope you get things sorted. Definitely mail order online is going to always use the cheapest versions for profit margins. It is a business. Another shout out to my cancer pharmacy....yes they obviously use generic versions for cost but they only use companies from Canada or USA if needed where quality assurance programs are still done. Also if I did have an unpleasant side effect that I couldn't tolerate my oncologist wouldn't hesitate to fill out a form that would make them have to use the brand name original for me. Early in my Letrozole journey I reacted to a generic and she had to do this so that I received the Femara brand only. Please keep us updated as you get things sorted. Take care.

[TammyCross in reply to awesome4ever]

It was Breckinridge, the one I got first. I can just switch pharmacies to get that generic.

Just wondering if anyone else had diarrhea and gas with exemestane. (I had surgery for a hernia last month, too, and wonder if that somehow messed up my gut. The surgeon says no, of course.)

[kokopelli2017 in reply to TammyCross]

also, you can go to any pharmacy and request them to order 'Breckinridge' for you going forward. if it is one of the brands that they do business with, they should be fine to do that. I go to the same pharmacy for years now and I told them of a certain generic that did not work the same for me as other brands and they make sure not to fill my script with that brand of generic. basically saying you don't necessarily need to change pharmacies, just the brand you are getting. sorry if that was confusing.

and just an fyi. a pharmacy may use one manufacturer for a long time and then suddenly switch....perhaps a better price? I always check the manufacturer name when I pick up my script (the one that causes me trouble if I get that undesirable manufacturer). good detective work on finding out the name Breckinridge👍.

hoping for your sake that it is indeed the manufacturer that caused your diarrhea and depression vs escalating side effects over time🙏

best wishes💛🤗

[TammyCross in reply to kokopelli2017]

I spent an infuriating two hours on the phone with an unqualified person at the mail order pharmacy, which sent me three months worth of the one I think is causing the problem, maybe. She kept offering -- over and over and over -- to call my primary doc (not oncologist) to get a different medication. I kept explaining that I could not go on letrozole or anastrozole, and had to take exemestane. That didn't stop her. Then she got on Aromasin is all they would cover. No, that would be the brand name by Pfizer, and they would not cover it.

The upshot is that I can get my oncologist (not primary) to send a letter requesting prior authorization for the Pfizer brand name exemestane. I cannot find out what the co-pay would be until she writes the letter. They cannot tell me now. Then if it is too much, I can apply for patient assistance. All of this is a lot of effort and then it would take time, and I don't even know that Aromasin would be better. (And then she offered me Arimidex, grr.)

As far as I can tell after hours of arguing is that the mail order pharmacy, which is great when it works, cannot give me a different generic. It is Zagus or the brand name.

I don't need to go hunting for a pharmacy or ask the one I use for a different generic.. The Rite Aid I use was the one that gave me the Breckinridge; that is how I know it is better for me. The local Rite Aid closed over a year ago, so this one is a bit of a trek, always crowded because we all switched over. The one that was a few blocks away was cozy, reassuring -- they knew me when I walked in, I didn't have to give my info, they talked to me. The pharmacists at the existing one are so pressed, they don't have time to get to know us or be nice. Still, when I walked in yesterday and waited in line, the pharmacist went in the back and came back out with the info on Breckinridge, and gave me the label. No stupid argument.

If I go that route, I just have to get the nurses or oncologist to order it from Rite Aid. I am not sure what happens about the insurance covering it when I have a three-month supply, but the mail order woman said I don't have to return it. Amazing. Sixty tabs of a very expensive medicine in two bottles I haven't opened, seal unbroken, and I am supposed to throw it away. I guess it actually has no intrinsic value. The mail order pharmacy is convenient, comes to my door, and they always remind me and refill automatically. Now I will have to call ahead and order, and trek 12 blocks to Rite Aid every month. Not the end of the world, but too bad. Same with Kisqali -- the patient navigator told me I have to call and re-order every month.

I hope the hypothesis that my stomach problems are from the Zagus exemestrane is correct, and this will solve it. I had some diarrhea and fatigue with the original one, but not so bad. What if it was something else? Also, my hair is thinning on my crown. Hate that.

[kokopelli2017 in reply to TammyCross]

I hope so too🤞. and I hear you....thinning hair always sucks😠

[TammyCross in reply to kokopelli2017]

I noticed that they aren't losing anything by telling me to dispose of their Zydus exemestane: I paid $169 for the three-month supply. I would rather spend that money on something else. Not trivial.

[Hopeful4Cure in reply to kokopelli2017]

Hey kokopelli2017, How are you doing? I have not seen any postings from you. I was thinking of you a few weeks ago because a new poster had questions about her spine and pain issues. Hope you are well.

[Whitaker in reply to awesome4ever]

I am in LA and the pharmacists at the hospital where I get meds are wonderful. I trust them completely.

[TammyCross in reply to Whitaker]

Lucky. Oddly, no pharmacy at Columbia Presbyterian.

[TammyCross]

Thanks! I didn't see Teva on the list of manufacturers and I don't know how to get that one, but I would really like to try. I will bring it up in my appointment this afternoon.

What is odd is that I found it really easy at first, the first month, so I don't know if the side effects just kicked in for me the longer I took it, or if it could be the extra ingredients, which differ.