Ibrance / Letrozole and Bloating anyone? - SHARE Metastatic ...

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Ibrance / Letrozole and Bloating anyone?

lindak220 profile image
35 Replies

Hi Everyone!

I am finishing up week 2 of my first cycle on the Ibrance 125mg / Letrozole combo. The further I get in to this the more I have been experiencing extreme bloating (to the point where my stomach is so extended I look about 4-6 mos preggers). Granted I am not a small woman but I have dropped at least 16 lbs since July. Not sure if the bloating is due to the meds or the fact that the MBC surfaced in 2 lymph Nodes within my body (one in my neck on the left and the other near my stomach). Was just wondering if anyone else has experienced bloating like this? Its very uncomfortable. I've tried heat, ginger tea, taking "Gas-X" (and I'm sure I am forgetting other things I've tried) and walking as much as I can but the discomfort remains. Any suggestions from my new community of friends?

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35 Replies
Barbteeth profile image
Barbteeth

Hi

Yes I suffer from bloating and it’s horrible..I used to have a flat stomach but some days it feels like a rock

Not sure whether it’s ibrance or letrazole that’s the culprit..I make sure I don’t get constipated as I do take many pain medications and they interfere with my digestion so I do take senna tablets occasionally and they do help with the bloating

Sorry not much help..side effects are something we just have to tolerate I’m afraid

I want the old me back!

Barb xx

lindak220 profile image
lindak220 in reply toBarbteeth

Me too Barb!! Yesterday was my first time feeling the "flu like" effects. I dug out my Allibiotic (made by NOW - its a natural immune booster) and took it this a.m. I can only hide behind so many big shirts and sweaters. I guess I'm glad it is getting colder here in Illinois! Just add more layers to hide my bloating!

I just want to be normal. I guess this may be my new norm. Blah!

Have a great day!

Nmartinez15 profile image
Nmartinez15 in reply tolindak220

Take magnesium pills. You will go to the bathroom once a day and you will not feel bloated. That's what I do

Patty41 profile image
Patty41 in reply toBarbteeth

I’ve been on letrozole for 3 months and just got online to see if it causes bloat and came across this group. I look pregnant and I’m 74😊. I see with reading very little yet that it definitely causes bloat. Feels like I need to let the sit out if the balloon.

Nanilynne profile image
Nanilynne in reply toBarbteeth

I’m also dealing with the same issue. I’m so bloated it’s like someone has blew me up like a balloon. It’s miserable!! I take prescription medicine for it but doesn’t help

13plus profile image
13plus

Hi Linda,

I noticed the same problem. Bloating and terrible gas that sometimes I can't even control! I wasn't sure if it was the ibrance or the Faslodex. (Taken letrozole

In the past with no issues but not on it anymore).

I saw in another thread somewhere recently that someone shared the fact that they had been told ibrance contains lactose. I'm going to look into that because I'm lactose intolerant! And that would certainly explain the problem for me. Do you have an issue with lactose?

lindak220 profile image
lindak220 in reply to13plus

Hmmm..I have never had an issue with lactose in the past. I emailed my oncologist earlier today and ye said he has never heard of bloating as a side effect. I can't wait to tell him how "MBC sisters" have also experienced bloating.

13plus profile image
13plus in reply tolindak220

Yes his response will be interesting! My onc said the same thing. To tell you the truth I was suspecting the Faslodex but when I heard about the lactose I wondered if it was the ibrance after all, especially as others here say they have the same bloating problem with ibrance.

My tummy is really bloated too. I thought it was just me. Probably the letrozole blocking the hormones.

mariootsi profile image
mariootsi

I have bloating and gas from the ibrance. My onc said to take lactaid because ibrance has lactose! Hope it helps!

in reply tomariootsi

I am lactose intolerant.

lindak220 profile image
lindak220 in reply to

Hi Sarcie,

Are you also experiencing the bloat especially with you being lactose intolerant?

mariootsi profile image
mariootsi in reply to

Ask your onc about taking lactaid. It helps.

Lizannern profile image
Lizannern

Thanks for your comment now I know what the gas may be from. Kept thinking it was something I had eaten.

Formersnowbird profile image
Formersnowbird

Lots of bloating here too with Ibrance/letrozole

lindak220 profile image
lindak220

Wow. You ladies are my saving grace. You have made me feel so part of a community and I no longer feel like I am on an island. Thanks so much for the feedback!!

isonupi profile image
isonupi

Found this PDF from Europe. I have big gas problems with Ibrance. Now I know why. Thanks big time for the replies to your question.

2. QUALITATIVE AND QUANTITATIVE COMPOSITION

IBRANCE 75 mg hard capsules

Each hard capsule contains 75 mg of palbociclib.

Excipients with known effect

Each hard capsule contains 56 mg of lactose (as monohydrate).

IBRANCE 100 mg hard capsules

Each hard capsule contains 100 mg of palbociclib.

Excipients with known effect

Each hard capsule contains 74 mg of lactose (as monohydrate).

IBRANCE 125 mg hard capsules

Each hard capsule contains 125 mg of palbociclib.

Excipients with known effect

Each hard capsule contains 93 mg of lactose (as monohydrate).

For the full list of excipients, see section 6.1.

lindak220 profile image
lindak220 in reply toisonupi

Thank you!!! I've never been lactose intolerant. But maybe such a concentrated amt of lactose is causing the bloat? Very interesting.

lindak220 profile image
lindak220 in reply toisonupi

Isonupi...would you by chance have a link to the above document that you found? Thanks!

isonupi profile image
isonupi in reply tolindak220

Hi Lindak220,

This is where I went: Ibrance, INN-palbociclib - European Medicines Agency - Europa EU

ema.europa.eu/documents/......

Nov 9, 2016 - Each hard capsule contains 56 mg of lactose (as monohydrate). ... with palbociclib, the recommended dose of letrozole is 2.5 mg taken orally ...

isonupi profile image
isonupi in reply tolindak220

Here is another address that has the same info: medicines.org.uk/emc/

isonupi profile image
isonupi in reply tolindak220

I searched Ibrance and lactose on google. I've tried to copy and paste the address but it doesnt look like it worked. I'll try one more time.

medicines.org.uk/emc/produc...

lindak220 profile image
lindak220 in reply toisonupi

You are awesome! Thank you so much isonupi!

13plus profile image
13plus in reply toisonupi

Argh it's true! I'm lactose intolerant do this really upsets me . I guess I have no choice but to try lactaid now but I hate the idea of putting anything into my body that aggravates it and then having to take something else just to treat the symptom!!

Terilyn12 profile image
Terilyn12

I’ve been on 125 mg Ibrance and Letroziole for 6 months and for me... the bloating is worst side effect ! You hardly see anyone mention that On any blogs 😢.... I have never had issue before .. it is strange to learn my new body

lindak220 profile image
lindak220 in reply toTerilyn12

I agree Terilyn. I struggle with the fact that this is my new "normal" ... That part stinks! I may call Pfizer to see what they suggest to do about the bloating. I will add on to this thread as soon as I find something out!

Terilyn12 profile image
Terilyn12 in reply tolindak220

👍🏼♥️

Gwennie123 profile image
Gwennie123

I also have a very bloated tummy. I try to ignore it. But when I go to put my shoes on I see it. Trying to learn to love it

lindak220 profile image
lindak220 in reply toGwennie123

You are a good person Gwinnie! I am finding it extremely hard to deal with. I think its because my stomach really sticks out a LOT. Thank goodness I lost some weight cause my clothes fit me a little looser now! :)

123048 profile image
123048

On Letrozole I am bloated but worst problem is memory, I have clothes I cannot remember buying, and dizziness is a huge problem. When I go to bed I pretend I’m at sea! Then I try to remember what I have done that day and before I can remember I lose concentration. On the up side I am in a haze and my family are patient. I also have diarrhoea which helps with my constipation.

So nice to read about all you lovely ladies xx

in reply to123048

Hi!

These sound like really uncomfortable side effects. I am on Letrozole as well, and have had a few episodes of forgetfulness. I would talk to your oncologist about the diarrhoea and constipation though. Maybe there is something that can be done to help ease your symptoms.

Sophie x

lindak220 profile image
lindak220

Hello Ladies,

The nurse from Pfizer called me as a follow up last week. I spoke to her to some degree about the lactose in Ibrance. She said I was the first of her "patients" to complain about the bloating. However, she said she would follow up with the oncology pharmacist and then follow up with me the next time we talk. Honestly I was rather surprised she new nothing about the lactose OR that no one else has taken the time to mention rhe bloating!

Onward...I also belong to an Ibrance group on Facebook. Through that network of MBC sisters, I learned that digestive enzyemes (taken with each meal) can help with the bloat. I started taking them on Monday night (NOW brand Super Enzymes is what I am taking) and I can tell you they are making a huge difference with my bloating. Most of it has subsided. Now, I just need to work on getting my appetite back. Its always something!!

Gwennie123 profile image
Gwennie123

I’ve also experienced bloating. I attribute it to constipation. I make smoothies with lots of greens berries in most of all flax meal. The flax meal really seems to help. Couple tablespoons at least.. Good luck With it

The-artist profile image
The-artist

I am on Ibrance and yes I have swelling in my feet and legs really bad. All the dr did was give me a pair of socks. Well I just got out of the hospital on March 25. I had so much water retention and plus I had pneumonia that my lungs were being crushed. I lost 5 gallons of water in 5 days now I have to stay on 40mg of Lasix. Its the Arimidex the dr in the hospital said. My onc disagrees but didn't have the swelling until I started on it. Just watch it. I'm nottrying to scare you but wouldn't want anyone to go through what I did.

Butterfly145 profile image
Butterfly145

HiI've just been put on letrozole and because I'm lactose intolerant and can't take the milk sugars found in most medicines, it bloats me and makes me very gassy. My stomach is like that even after taking mint tea, the only thing that relieved the symptoms was having a bowel movement.

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