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Topic: Letrozole and Digestive Problems

Forum: Hormonal Therapy - Before, During, and After —

This is a safe place to share your experiences of others considering or on hormonal treatment.

Posted on: Oct 26, 2020 03:43PM

ThreeTree wrote:

Hello All - I would greatly appreciate hearing from any and all regarding any digestive problems they have had that can likely be attributed to letrozole/Femara. The long list of side effects for this drug includes "digestive problems", but I cannot seem to find any more detail as to what those "digestive problems" might be specifically or how frequently they might occur in people who take this drug.

I began taking letrozole in January and since last August I have had a lot of upper stomach pain, loss of appetite, and even symptoms that are similar to panic attacks sometimes, when food just enters and hits my stomach. My whole body can go weak and I double over with a real bad dull ache (not stabbing pain). The doctors I've seen all seem to think it relates to stomach acid and one said that it sounds like a classic ulcer. It may well be just an "everyday ulcer" (I've never had one before), but I am also beginning to wonder if what I am experiencing isn't just another awful side effect of letrozole. I was given H2 blockers (famotodine/Pepcid) that helped a little, but not completely - it also made me sick with side effects (freaky, kept waking up at night, and more.) Since that did not help I actually went to the ER and they did a CT scan of the area and saw nothing out of the ordinary. They gave me a PPI (omeprazole/Prilosec). That too seemed to help some, and more than the H2 blocker did, but it also made me really sick (breathing trouble, feeling "emotionless", weird, creepy, not really here, etc.). After reading online reviews, I read that a lot of people prefer Gaviscon, that it can help with ulcers, and I saw no complaints about awful side effects like I did with the other drugs. I took it for three days and again it seemed to help initially, but then I got all out of whack and read how it can mess with your electrolytes because of the aluminum and calcium in it. I stopped taking it, and have felt much better overall since then (a couple of days now), but still have this feeling that there is a sandbag in my stomach and that I am always full, with food causing upset when I eat. The doctors suggested a longer period on the acid preventing drugs, but I simply cannot do that due to all of the side effects.

During this time, I have also been trying a lot of home remedies, such as DGL, raw sauerkraut, and raw honey with nigella sativa powder. Again, all of these things seem to help some, but not completely. I have gotten relief from just occasional heartburn in the past with these home remedies. I am back to wondering if stomach acid or an ulcer is really the problem. I did not have many of the standard ulcer symptoms like nausea and vomiting. There is no indication that blood is involved in any way. I just have this chronic feeling of heaviness and fullness in my stomach that food sometimes puts into something of a spasm, and this "total body" out of sorts feeling that can come with it all sometimes. The only thing the doctors will do next is an upper endoscopy and I would like to avoid that at almost any cost. All of my other tests have indicated that I am basically fine and stable for now.

Before I get to the point of having to schedule more tests with doctors, etc. I would really like to know if any others taking letrozole have experienced stomach and digestive issues, what they were like, and if they could likely be attributed to the drug.

Many thanks for reading and posting if you do!

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Oct 26, 2020 07:52PM Spookiesmom wrote:

Oh my goodness I could have written that!!!! Was on I/L 125 for a little over a year. Had a constant low grade nausea, sometimes more, to the point food sounded revolting. Grumbled to MO, he dropped it to 100, thinking the ibrance was the reason. First day on 100, after 2 weeks off, 3 hours later, I was ready to 🤮. Got zofran, worked well. Decided no more ibrance.

I’m still nauseous, still on letrozole. I DO NOT want the upper endoscopy either. Will see MO in a few weeks wondering what he will say.

I’ve had aramidex and tamoxifen, had to stop because of joint pain.

Will watch this thread, hope we both find a workable answer.

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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Oct 26, 2020 08:06PM finallyoverit wrote:

Not sure I really have a definitive answer, but I’ve had bad heartburn since being on Femara.. never had it before. I’m not sure if it’s that or one of the other drugs they gave me on, but it’s something. It’s the only stomach/digestive issue I’ve had. I wish I had the no appetite one; I seem to have the opposite going on. I’ve put on about 20 pounds and can’t seem to lose an ounce. So frus

Dx 10/2011, IDC, Stage IIA, 0/4 nodes, ER+/PR+, HER2- Dx 5/2017, Stage IV, metastasized to bone
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Oct 26, 2020 09:01PM ThreeTree wrote:

Spookie's Mom - So sorry to read about your troubles! Aren't all these drugs just the worst? I too hope that we can find an ultimate solution. I have wondered if this wasn't just "letrozole nausea", but I don't feel nauseous in the traditional sense - it's more of a bloated full and "stuffed" feeling, but with an overall body yuck to it, and food can make it worse. I'm holding out for the home remedies at this point. Maybe they will just take some more time. Either that or it is not an ulcer.

Finally Over - Interesting about the Femara heartburn you are experiencing since starting the drug. I've never really had any major stomach problems before this, so can't help but wonder if it isn't the AI. Re the appetite, mine comes and goes. Since starting the letrozole in January, I did put on about 8 pounds and then over the last month and half, since food has been so awful, I lost that 8 again, but now I've put about 2 back on since I have been able to eat a bit more after all those acid reducers/blockers, etc. It's just not back to normal though, just a little better. That letrozole weight gain is another really awful side effect that so many of us have to put up with. You've been pretty lucky with only 20, as I've read of many who've gained much more. Thanks for chiming in and I wish you all the best.

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Oct 28, 2020 10:04AM Spookiesmom wrote:

Yesterday I “ forgot “ to take the letrozole. I usually take in am. Felt better all day, not great, better. Until about dinner time. Food wasn’t appealing so had a malt. This morning woke up with no nausea. How nice!!

So will discuss with MO next week but letrozole seems to be the culprit.

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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Oct 28, 2020 11:38AM ThreeTree wrote:

Interesting about the timing of it all. I have been trying to note patterns related to taking letrozole and side effects ever since I started taking it, and if there are any, I think they are subtle. I take mine every other day, and on the days I take it, I take it in the late afternoon with a bowl of plain probiotic Greek yogurt and fruit (with no sweetener and a little bit of unsweetened pumpkin pie spice - yum). I don't have too many problems after that except that I can kind of feel a surge of the drug starting in my body and I get a bit more tired and sleepy than I do on the evenings when I don't take it. I do intermittent fasting, so don't eat again after that late afternoon yogurt until around 8:30 am the next morning. My worst stomach symptoms are in the morning and at lunch. By the later afternoon they always seem improved. Trying to relate it to the letrozole is "sketchy" but I do think there is at least a low grade pattern of some kind. I have heard that during longer periods of not eating, stomach acid can increase, so it might just be because I don't eat for awhile. It seems to me that if nothing else, letrozole and it's subsequent estrogen depravation, might just cause a weaker stomach lining overall and that we are therefore more prone to anything and everything that causes digestive problems and even ulcers. I've read that hormone imbalances can cause digestive troubles. Just some more mostly random thoughts.

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Nov 2, 2020 11:51AM tapper1106 wrote:

HI there.. I had digestive issues with Letrozole.... i didnt want to eat but if I did I felt like all my food was coming up through my throat.... and constipation!!!! So i am off now and ready to switch to aromasin.

May I ask why you take your pill every other day? I have seen that mentioned before and has that helped?


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Nov 2, 2020 02:08PM - edited Nov 2, 2020 02:16PM by ThreeTree

tapper1106 - I started the letrozole last January and it was in August that I started with the digestive trouble, and yes, loss of appetite has been a big part of it, but I haven't experienced the coming back up my throat part. I just double over, my body goes weak and tingly, and I developed the "probable ulcer" symptoms. I also pay dearly for whatever I eat one day the next morning in the bathroom, so the less food, the less trouble. I do have some new perspectives, though, as I was just back in the ER again a few days ago over this. You might want to check your potassium levels. Mine were low and they gave me some supplements to take that day. It seem to have helped somewhat, but I'm still not back to normal - the improvement has been notable though. It had been low on my other visit to the ER earlier this month, but they didn't say anything then. Low potassium causes all sorts of muscle weakness, tingling, numbness, and heart racing, etc. Everything I was dealing with. The ER doctor told me that he does think it's plausible that it is from the letrozole. I told him I wondered if it didn't just weaken the stomach lining, like it weakens the rest of our skin, etc. and make it too difficult to process the food or something, and he said it made sense, but that there's no way to know for sure. I also read since then, that low potassium can cause digestive problems, and that letrozole can cause low potassium (hypokalemia) in some. I'm working that angle now, but they still want me to go see a GI doctor and I'm in no hurry - called them Friday and left a voicemail. Haven't heard back and not sure how fast I will try to get in touch with them again.

Re the every other day letrozole, I have gone rogue on this and my oncologist does not agree with my decision. I don't know how it might or might not effect side effects, because I started taking it every other day and have never stopped - she wanted me to just do that for maybe a week. There is a thread on this Hormonal Therapy board called "Half Dose of Femara". You might want to look at that for more info too. I went ahead with my decision after reading that Novartis (the maker of Femara) stated in their materials that anything above .5 mg of letrozole per day seemed to lower estrogen levels to near non-detectable. I also read a study (Mayo Clinic and another cancer center if I remember) that was all randomized, controlled, double blind, etc. and they too said that doses of .5 and above, along with intermittent (e.g. every other day) dosing seemed to work. Another study I read was a pharmacy one that suggested that older people (I'm 67) might not clear the drug as fast as younger people. It also has to do with the half-life of the drug, which for letrozole is about 48 hours. That means that if you take 2.5 mg on day one, 48 hours later, you still have 1.25 mg in your system, which according to all the data I saw should still be enough to do the job. That's what I'm banking on, and I know it could be a risk, but Novartis seemed to say that they picked the 2.5 mg per day dose to "max out" everything. My understanding is that anything over and above that 2.5 mg per day, they start to see many more serious side effects in some people. Also, in the Mayo Clinic? study 1.25 mg every other day and 2.5 mg every other day seemed to keep a good effect, but .5 and 1.0 don't seem to provide quite enough coverage on an every other day basis. They seemed to get the best result with 2.5 every other day.

Also forgot to mention above, the Mayo Clinic? study did not see any difference in side effects no matter how much or how often people took letrozole, and it has been chalked up to the fact that it is the estrogen deprivation that causes the side effects, and all these different doses and ways of taking it cause estrogen deprivation. No matter how much you take, if it lowers your estrogen to an acceptably undetectable level, you will experience all the crappy side effects just the same.

I'm hoping not to have to switch drugs at this point. All that switching has it's own problems. Maybe I just need some potassium supplements or something, but I can pretty much bet my oncologist will not agree that any of this has anything to do with letrozole. I told an urgent care doctor that and she said she could understand the oncologist promoting a "non-letrozole" argument, because she would want me to continue to take it. I think that is the reason, but I would much rather know the "truth" and the details involved.

I really hope the aromasin works better for you - good luck with it!


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Nov 2, 2020 02:23PM Spookiesmom wrote:

I’ve been on aramidex and tamoxifen. Both had the same se for me, severe joint pain. Don’t have that with letrozole.

I’m on a diuretic, and a potassium pill. Have been for years. No problem there.

This gastrointestinal issue seems to be related if I have regular daily bowel movement. I can eat bland, spicy, or nothing and still feel nauseous. Which is making my brain go dark places. Will see mo Thursday he will get an earful

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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Nov 2, 2020 05:44PM ThreeTree wrote:

Hi Spookiesmom - I think the side effects from the different AI's can vary, but most of them still produce some side effects; some just "less worse" than others. I've see where some say they had terrible knee pain with one, but not another, but the new one they switched to caused headaches and worse hot flashes or whatever. It seems like it can wind up being a lot of six of one, half dozen of the other, from what I've read on these boards.

Re the potassium: As I've been looking into my low potassium problem, one of the things I came across was the fact that potassium supplements can cause digestive problems. Could that possibly figure into your situation at all? I've wondered if I should see about getting some, but then thought it might not be such a good idea when I read that they can cause stomach trouble, because that is the last thing I need right now.


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Nov 2, 2020 06:14PM Spookiesmom wrote:

I doubt the potassium is the problem. It’s rx from my cardiologist and have been on it several years, about a year with the letrozole. This GI thing started a few months ago.

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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Nov 2, 2020 06:29PM ShetlandPony wrote:

ThreeTree, potassium supplements give me diarrhea. I need to ask if an IV potassium infusion would do the same. For now, I have a list of potassium foods posted on the fridge. Lmk if you want to see it.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Nov 2, 2020 08:32PM ThreeTree wrote:

spookiesmom - I read on Drugs.com I believe, that letrozole can cause digestive trouble, so it could be letrozole or potassium supplements. Also, I wonder sometimes too, if drugs can't cause their side effects after long term use. I even wondered this about my stomach trouble, i.e. if things that I had taken (supplements) for a long time with no problem weren't causing the problem now. It's so hard to know; so many factors.

Shetland Pony - Thanks so much for the offer of the high potassium foods list. In all my recent reading around, I've come across a lot of lists, so think I know pretty much what to eat more of (how often can a person find beet greens?!). I've been doing a lot of potatoes, bananas, salmon, and even prunes that I also eat because they are supposed to help with the osteoporosis and letrozole issue. This is when I can eat mind you, which actually has been getting more frequent, as my stomach thing seems to be improving a bit after those potassium tablets they gave me in the ER that day and some more "focused" food since then. Also, in my digging around about potassium I did see that IV potassium also has some pretty bad sounding side effects associated with it. As always though, it doesn't mean that everyone will get them.

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Nov 2, 2020 09:44PM ShetlandPony wrote:

Did your reading tell you if IV potassium could cause diarrhea like the pills do? Re the potassium foods, how about coconut water, and watermelon (real watermelon juice) popsicles? I can consume those even when I don’t feel like eating.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Nov 2, 2020 10:26PM ThreeTree wrote:

ShetlandPony - Here are some links to some of the stuff I read over the last week. The first two relate more to side effects from tablets and liquid that can be taken, but the third one refers to IV side effects. They don't look good to me, but again, I'm sure everyone who gets an IV of potassium doesn't get all, if any, of the side effects, but for me at least, I'd be wary and do it only if something really bad was the alternative. Hope this helps.

https://www.mayoclinic.org/drugs-supplements/potas...

https://www.mayoclinic.org/drugs-supplements/potas...

https://www.mayoclinic.org/drugs-supplements/potas...

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Nov 2, 2020 10:47PM ThreeTree wrote:

ShetlandPony - Forgot to mention that when I had chemo I could hardly eat anything and just wanted to have something in the morning like coffee or tea - just that one comforting thing you wake up to and know you can enjoy while reading the news or something. Coffee and tea made me sick. Well, I tried all sorts of things, and it turned out that coconut water was the only thing that did the job. I would have a big bottle every morning through most of chemo, and it did provide that morning routine comfort that I was looking for and it went down real well. I've got a couple of bottles now in my frig - and they do have a good bit of potassium. I got some watermelon popsicles back then too and they were pretty good. Hadn't thought about them this time around - thanks for the tip! I don't think there are any real watermelons in the store these days, but I could check; you never know. I love watermelon! One thing that is in season now that is pretty high on most lists too is Danish/Acorn squash. I've had a good bit of that too.

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Nov 3, 2020 06:39AM Spookiesmom wrote:

OT sort of. As you said, you want some sort of normal doing chemo. I did too, and wanted my coffee, even if it was hard to get down. I needed to stumble to the bathroom. Did, came back to find my new rescue dog, on the coffee table, my coffee dripping off his chin.

Beware where you leave your drinks 😂😂😂

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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Nov 3, 2020 02:27PM - edited Nov 3, 2020 02:28PM by ShetlandPony

Thank you for the links, ThreeTree. I have an acorn squash waiting in my kitchen right now.

Spookiesmom, I guess doggies want their morning cuppa, too. I have a cat who lies in wait for someone to leave a plate of food unattended. He is a very “food-oriented" fat cat. But he leaves my morning tea undisturbed. I love to start the day with a ginger-peach-turmeric blend with honey.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Nov 3, 2020 03:29PM LillyIsHere wrote:

SP, sounds delicious. How do you make ginger, peach, turmeric blend? I can get fresh ginger and turmeric but I assume frozen peaches at this time of the year. How much do you take? I want to start in December since I have decided to quit any supplement and spices this month. My skin is turning yellow from turmeric (I think, weird!)

To respond to ThreeTree, I take letrozole but don't see any problem with the digestive system. I take it at nighttime with food. Maybe you can try to take it with a banana that has potassium and letrozole won't hit the empty stomach at the same time.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/29/2019 Femara (letrozole) Targeted Therapy
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Nov 3, 2020 04:23PM KBL wrote:

I admit I didn’t read all of the comments but wanted to say that the only way I found out my lobular cancer spread to my stomach was by endoscopy. No imaging whatsoever showed it.I’ve had three since May of 2019. It was the easiest test I’ve ever had, and I had absolutely no pain afterward. I’m not sure I understand why you’re trying to avoid one. Please feel free to ask any questions.

Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Nov 3, 2020 05:00PM ThreeTree wrote:

LillyIsHere - I actually do take my letrozole with food. I take it in the late afternoon with a bowl of plain probiotic yogurt to which I add a banana and some prunes, as they have potassium too. I also add some flax seed and pumpkin pie spice (unsweetened). It has been a mixture that has gone down better than most things over these last couple of months. I've been doing this with or without the letrozole for well over a year now. On rare occasion, I have had to take the pill on an empty stomach and it does not seem to cause any trouble at those times, so I am still not sure just what has brought on the stomach problems. It might just be that letrozole generally thins and weakens skin/tissue, hence the digestive lining or whatever. Just some random thoughts. In some ways, I'm holding out for it being just a regular old "ordinary" ulcer that just needs some time to heal or something. From what I know at this point, that would be the simplest outcome.

KBL - I am very sorry to hear that your cancer spread to your stomach, and that has definitely been a possibility in the back of my mind, and I appreciate your input in this regard. You know in this situation with almost any physical change, pain, ache, or whatever that thought of cancer spread is always one of the first things I think of. However, they keep telling me that I am stable and that they don't see anything really all that out of sorts, except maybe the potassium.

The reason I don't want the procedure if I can avoid it is due to the normal risks of anesthesia, and the fact that you have to find an escort, which usually involves asking a friend to take time off work for me, etc. I lose a whole day or two with that sort of stuff, have to put someone else out, and there are inherent risks in any of those procedures. I also hate, hate, hate needles and IV's, ect. with a passion. I'd like to have some better indication that there really is something wrong with my stomach than just hearing that it is a "probable ulcer", or a "stomach acid problem". I know that not all imaging shows all things and that sometimes those endoscopies are all that's left and can show unique things that the other methods don't/can't, but I am just holding out to see if anything else helps first. I've had a CT scan with contrast, x-rays, and ultrasounds, along with the usual blood work, etc. and they see nothing really out of whack except the potassium levels. They've even gone so far to ask me the old "could it be psychological" thing (it's not, I've asked that of myself). I do have a big fear that it could turn out to be cancer spread, but so far nothing is saying that. I just got a call late yesterday from the endoscopy people and they don't seem to think it's even as urgent as the ER doctor did. They have all the records and they said they would look them all over, maybe with a committee of some kind, and then maybe by the end of this week or the beginning of next week they can let me know if they think I should be seen or not. This is a major university teaching hospital in a large well known city, so I assume they know what they're doing.

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Nov 3, 2020 07:07PM KBL wrote:

ThreeTree, I totally understand trusting your doctors, but always listen to your inner self. I don’t know whether you have ILC or IDC. My story is a long one that started in 2013, and all the medical people I saw missed the cancer that was in my spine. I went six years not knowing. In that time of not knowing, it was spreading to my stomach. When I started to lose weight and wasn’t able to eat more than a few bites of food without feeling entirely full, my primary doctor recommended an endoscopy. I was not having any gastric symptoms like gastritis.

After the endoscopy, the doctor looked me in the eye and said everything looked normal, except I had gastritis. He took five biopsies anyway, thankfully. I got a call two weeks later from my primary. The gastro couldn’t bring himself to call me. He was extremely shocked that it was cancer because he truly said it looked normal. I ended up having a second endoscopy with 12 biopsy samples to double confirm it was cancer.

Please know I am a rare case, and I don’t want you to think that I’m thinking it’s cancer in your stomach. It is extremely rare. I’m just wanting to ask you to please not throw away an endoscopy if things don’t get better. It could very well be from the Letrozole.

I lost weight very quickly and couldn’t eat. Those were my symptoms. I also have had anemia since those symptoms started. All other bloodwork was normal before I started medication. I do have ILC. It’s occult de novo with no primary found in my breast. I am one weird case. It’s a very sneaky cancer.

Sorry for the long response. I wish you the best and that your symptoms subside. There is truly nothing worse than knowing something isn’t right and we’re not able to figure out the reason.


Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Nov 4, 2020 09:57AM ThreeTree wrote:

Hi KLB - Again, I really appreciate your input here, and do not worry in the least about a long reply - I'm hardly one who could complain about people making long posts! I try to keep my shorter, but usually fail. My troubles are IDC, with a pretty large tumor (about 5 cm), with no known node involvement; diagnosed about 2 years ago. It is the tumor size that seems to be the biggest problem for me and the most likely reason for any spread that might occur. I had no idea before, but from what I've been reading ILC does seem to be real "sneaky". Your situation is very unfortunate and my heart goes out to you, and there are some real lessons for the rest of us in your situation too. We just never know! I know that spread to the stomach is not a usual place for my kind of cancer, but I also know that we can never say never with this stuff.

I have also not had too many other symptoms besides feeling real full after a few bites and/or not being particularly hungry at all. I do get bloating and some signs of GERD (my onco was always telling me I had GERD during chemo, but I chalked that up to a chemo thing; she also seemed to think almost anything and everything was GERD, so I kind of dismissed most of that). I have not had all those symptoms like bad nausea and vomiting (with or without blood) that so many describe with ulcers, but I have also read that some people have an ulcer and only feel full or only have that dull upper abdominal ache like I do. The upper GI probably is the answer at this point, but now as I mentioned before, I'm not sure that the GI people are thinking it is particularly important, since they said they'd get back to me next week - maybe it's just because of covid. The ER doctor, who has seen me twice this month, thinks it's pretty urgent and talked to them about getting me in on an expedited basis, but apparently they don't see the same urgency. The ER doctor seemed to still think it is an ulcer but told me that the complications can be so dangerous, e.g. bleeding, perforation, etc. that I should really get it checked out in spite of my fears. One of my big fears is that it could be cancer spread - an odd and unusual spread, but a spread nonetheless. I'm no more ready to hear that, than I am to have the upper GI. I just want to bury my head in the sand and run away form it all. (That's how my tumor got so large too - I ran away from a lot of early suggestions that something might be wrong.) Would much rather have it be just part of the "general yuck" of letrozole and deal with it on that level.

Right now, I'm just holding out for a plain old "ordinary" ulcer at this point, but know in my mind that it could be more. Way back in the day (about the mid 1990's) I had a real bad stomach problem with some similar symptoms and it just went away on it's own after some real misery. That gives me some hope that it might not be cancer spread. Looks like low potassium, letrozole, GERD/ulcer, and cancer spread are all possibilities. I've read that all these things can cause my symptoms.

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Nov 4, 2020 11:20AM KBL wrote:

ThreeTree, the wonderful thing about this site is we have each other to bounce things off of. I totally get where you’re coming from. Life is never the same once we get the diagnosis of cancer. Please know if you have any questions about the endoscopy in the future, you can ask me. I am thinking of you and hope the issues go away on their own. I am the type of person who wants to have all my results before I speak with the doctor, but there are some who want to wait so as not to speculate. We all have our way of dealing with things, and I would never judge you for how you deal with things. It’s so nice to be able to be open and share concerns. I have put this post in my favorites. I will check back periodically to see how you’re doing.

Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Nov 4, 2020 11:49AM ThreeTree wrote:

Thank you, KBL!

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Mar 31, 2021 01:25PM Humblepeace wrote:

Good morning,

I started Letrozole about 5 weeks ago after being on Arimidex for 18 months. I noticed about one week ago I began to have tingling in my feet, legs, arms, and face even over my buttocks. I’m not diabetic. I have a lot going on this week and this does nothing for my peace of mind. Has anyone else had this experience from being a letrozole.

Dx 3/2017, IDC, Right, Stage IIA, Grade 3, ER+ Hormonal Therapy 6/10/2018 Arimidex (anastrozole), Femara (letrozole) Surgery Lymph node removal: Right; Mastectomy: Right Radiation Therapy Whole-breast: Breast Chemotherapy
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Mar 31, 2021 04:28PM ThreeTree wrote:

Humblepeace - I get tingly with the letrozole - not to the extent that you have described, but it is usually accompanied by body weakness, especially in my limbs, along with stomach/digestive problems. I am finding that this all usually correlates with low potassium levels, which can get serious if not kept in check. I have had some trips to the ER over all of this, and the one thing that always stands out is the low potassium. I don't know if letrozole depletes potassium or if it's something else, but I know I never had this problem before letrozole. Also, I got real bad with the tingling and weakness a couple of times and noticed that it was when I also took Claritin. Each time after I dropped the Claritin and increased my intake of potassium, I got better. You might want to consider the effect of anything else that you take too, combined with the letrozole. Hope this helps.

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Oct 8, 2021 01:34AM - edited Oct 8, 2021 02:32PM by PrincessButtercup

I was just looking up Letrozole and GERD, and found this thread from a year ag. The indigestion seems to be getting worse, to the point where I sometimes need two Prilolec tablets in a day. Am planning to ask my MO about it next week. I've already given up most of my favorite foods to try to deal with this.

Dx 11/15/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 12/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/21/2018 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/1/2018 Whole-breast: Breast Hormonal Therapy 6/11/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Femara (letrozole)
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Oct 8, 2021 11:30AM Nikisworld wrote:

I have been having digestion issues on letrozole too!! Very slow digestion and takes ages for my food to go dow. I take probiotics as well but doesn’t seem to help much.

Dx IDC: Mucinous, Right, 2cm, Stage IV, metastasized to lungs, ER+/PR+, HER2+ (DUAL)
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Oct 8, 2021 12:29PM ThreeTree wrote:

I've read that low estrogen slows down digestion. I think that is the reason for all these digestive problems; something about when estrogen goes down, cortisol goes up, and then digestion slows down among other things. I'm no scientist, but if you google "Does low estrogen cause digestive problems?" reputable stuff will come up that says yes. This low estrogen just effects every cell, enzyme, and other substance in our bodies and causes all sorts of messed up situations. Things like prilosec and pepcid that doctors suggested I use, actually made my problems worse. In my case I also think I might have had an undetected uti. They tested for it when I complained of my stomach problems, but nothing ever registered (I understand that's actually quite common). Months and a lot of continuing stomach trouble later, I also got a sinus infection, so was prescribed some antibiotics. The antibiotics cleared up my sinuses, but very interestingly, most of all the stomach and lower abdominal pain I'd been having cleared up too. After a couple of weeks, the stomach symptoms returned, along with lower abdominal/pelvic pain, and fever, so I tried d-mannose that time, and it too cleared up all of my problems. I'm beginning to think my main problems were constipation from the slowed digestion caused by the letrozole, and then a chronic and simmering uti also caused by the letrozole.

Now that I think I have a handle on the problem, things have been much better. No more uti symptoms and I always eat 6 dried plums (prunes) a day - largely for bone health (a whole 'nother thread re AI's), but they also help with the digestive issues. I also drink 4 oz of unsweetened pear juice every day, as it too has a mild laxative effect. I've also added 2-5 tablespoons of first cold pressed extra virgin olive oil (has to be all of that) largely for bone health too, and like the pear juice, it has a mild laxative effect. If that doesn't do it, I had a few tablespoons of raw buckwheat honey during the day (mild laxative effect), but not often, as the other things seem to do the trick most of the time.

Just as with the over the counter stomach acid products, the OTC laxatives also made me feel worse. These more natural things can be a bit of a pain in their own right; getting it all in every day, and they do contain calories, but it seems to work for me.

Do consider that some of the problems might be just old fashioned constipation along with possibly something else, but yes, it's probably caused by Letrozole.

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