Letrozole Voluntary "Unauthorized" Week Off Anyone?

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ThreeTree
ThreeTree Member Posts: 709
edited November 2020 in Hormonal Therapy - Before, During, and After

Hello All - Has anyone taken a week or two off of this drug just to see if certain symptoms they might be having are a side effect/result of Letrozole? I have read on these boards that some have had their doctor suggest a week or two off to "test" whether a symptom is Letrozole related or not, but I'm also wondering if anyone has done that just on their own. On the one hand they say that any break in the regimen could contribute to a worse outcome, but then I do see where some say their doctor suggested and sanctioned time off, so I am a bit confused.

I have had ongoing upper stomach pain that I am beginning to think more and more is a side effect of the Letrozole. While it doesn't seem to be a common side effect and I don't find much on the BCO boards about it, I have seen on some other boards where women complain of bad stomach pains that they are convinced are Letrozole side effects. I've been to urgent care and to the ER twice and the scans, imaging, and blood work show nothing concerning. Antacids and acid blockers, etc do not help and actually seem to make things worse. The only other thing I can do now from the dr's perspective is get an upper gi that I am not anxious to have. I did call about possibly scheduling, but was told I'd have to get a Covid test within 48 hours of the procedure and round up an escort. Well, I had a Covid test once in the ER and it was terribly unpleasant and I have no desire to get another one unless absolutely necessary. I also am having trouble asking anyone to accompany me, because they will be exposed to Covid at this time of super high increase in cases. I can't really ask anyone to expose themselves to the virus on my account.

I'm thinking about taking the next week off of the Letrozole just to see if anything improves. At least then I would know that it is the drug and not something else, and could make new plans/decisions from that point. Would taking just a week off be all that bad or dangerous? Has anyone else done anything like this and did it help them sort out their side effects? Would a week be enough? Some have said that it took them weeks and months after actually stopping the drug permanently before they noticed any changes if at all. I'm not looking to stop altogether, just to know what is causing this stomach pain, so I will know what I might be able to do next. I'm almost certain the oncologist would tell me not to stop, that it is probably not Letrozole causing the problem, and that I should get the upper gi.

Many thanks to any and all who might read and/or post.


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  • LaughingGull
    LaughingGull Member Posts: 560
    edited November 2020

    Hi ThreeTree,

    How can stopping for a week help you determine with any certainty if Letrozole is the culprit of your symptoms? How are you going to measure improvement, how are you going to isolate the effect of stopping this drug from other confounding factors? Let's say you feel things are somehow improving after a week (or even improving noticeably), how can you attribute the improvement to Letrozole alone, and how will the result help you decide what to do next? What decisions are you willing to make, based on the result of this experiment? Wil you quit Letrozole against your MO advice, and without solid proof that it will help the root cause of the stomach pain? What if you do quit Letrozole, and later your breast cancer returns, and so does the stomach pain, how do you think you would feel about the decision?

    I would take the stomach symptoms seriously and would go with whatever diagnostic tests are appropriate for stomach pain according to the experts. Yes COVID is making everything harder and we need to be patient. It sucks but I wouldn't take any shortcuts or workarounds or make experiments and decisions on my own.

    I wish you best and hope you don't take offense in my bluntness,

    LaughingGull

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  • ThreeTree
    ThreeTree Member Posts: 709
    edited November 2020

    LaughingGull - I don't take offense at your bluntness at all, and I appreciate your response. What you've stated is all good food for thought. Some of the things you mentioned, I have thought about and are weighing into my decision. I just know some have taken a break for a week or two to see how some symptoms go, and they and their doctors seem to get a definitive sense then of whether it is Letrozole related or not. Thanks!

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited November 2020

    I’ve taken a 3 week break. MO said 2, I did 3. I wasn’t having pain, just nausea. Like you, OTC stuff doesn’t help. He rx’d zofran. That helped, but can/does cause constipation.

    I’m going to start aromasin? tonight. It’s the only one I haven’t tried, in 8 years. I do think the nausea was from the letrozole. I lost 6# the last month I was on it.

    I’ve been off the ibrance too. The plan is to try aromasin for a week, then add the ibrance. If I’m lucky I’ll get a year or 2 from this combo, like I have from the other AI.

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  • ThreeTree
    ThreeTree Member Posts: 709
    edited November 2020

    Spookiesmom - Glad to hear you may be on the way to a solution for your problem! They say Letrozole can cause nausea and I know some here have a real problem with it.

    I don't have classic nausea so much as a super bloated feeling and what seems to be something like a perpetual pain/cramp right below my breastbone. Yes, those prescriptions and OTC things can be very constipating and I'm beginning to think that might be part of my problem too. I've read elsewhere that low-estrogen levels can slow down your whole digestive process and I'm wondering if that isn't what's happening in my case. It's like everything just sits there in my stomach and takes a long time to process, all the while causing pain, bloating, etc. It's real confusing to me how some doctors think it is OK to take a break from these drugs and with some it's absolutely not. I really hope the Aromasin works out well for you - you've had a real rough row to hoe with that nausea.

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