Ibrance side effects

[monkeygirl62]

I am on Ibrance 125 mg and letrozole and I have bloody nose constantly and bleeding gums. I have a cold and slight cough. Not bacterial because I had recent chest x-ray and blood tests. I have mets to lungs. But no infection on my lungs. I see my oncologist next week. I am thinking a dose reduction is in order. Has anyone had a bloody nose and gums on Ibrance?

[awesome4ever]

Hi Monkeygirl62. Have you had your blood work checked recently. Ibrance( Palbociclib) can reduce the number of platelets, which help the blood to clot. As a result you may bruise more easily, have nosebleeds or your gums may bleed when you brush your teeth. These can be quite common. Make sure you tell your oncology team about this. It may or may not require a dose reduction. Sometimes it may cause you to have to extend the time off between cycles but again this is the decision your oncology team needs to make. Rest assured this isn't that uncommon but I'm sure disconcerting when it is happening to you. Take care.

[monkeygirl62 in reply to awesome4ever]

Yes I did have blood work done even anticoagulation timing. It's pretty low like 107 for my platelets. But not life threatening, and I see my oncologist next Thursday. I will need a dose reduction so that I don't have to have extended the time off of Ibrance since it's working well for me. The ER doctor said he thought it was not a side effect of Ibrance the gums bleeding. But I thought differently so that is why I ask all you lovely thrivers about this. I am so grateful for this group!!

[Misspositiveattitude]

I had both bloody nose and gums on Ibrance 125 and now on 75mg for the past year with no issues and has kept cancer at bay!!

[monkeygirl62 in reply to Misspositiveattitude]

Oh good to know! I will be sharing that with my oncologist and she will probably reduce my dosage. She's been holding off I think as long as she can for my sake of course to get more tumor reduction. My tumors are shrinking and my tumor marker CA 15-3 is dropping quite a bit.

[Elle713 in reply to monkeygirl62]

Hi Monkey

Not sure how long you have been in this treatment but bloody nose was def my first side effect. And I bruised easily. It did not last for me. I was on for 18 mos without progression.

[monkeygirl62 in reply to Elle713]

Oh wow first side effect, I have been on this only 5 months now and haven't had any other side effects before this, except for some fatigue about the third week.

[Nocillo]

No real side effects from Ibrance except fatigue. I’m sorry you’re dealing with all that.

[monkeygirl62 in reply to Nocillo]

Thank you for your response. I do have the fatigue as well. I am also on eliquis so the Ibrance is what is making the nose and gum bleeds and the new bruises too. I saw that the Ibrance enhances the side effect of eliquis. I asked to be taken off the eliquis but was told no because at one point the tumors created numerous blood clots. The blood clots are all gone, I had a test for them.

[Lizzietosh]

Ribociclib and same SE. Lung mets but no infection, been checked out but cough, runny nose and bloody nose linings all the time.

[monkeygirl62 in reply to Lizzietosh]

Yes it's not fun at all to have that going on at all. I too have mucus and cough on the Ibrance. Any chance you will get a dosage. Hugs 🫂 and prayers.

[Lizzietosh]

I've been reduced to 400mg from 600 and am desperate not to go any lower; only on my 2nd cycle so no scan yet and terrified in case it does not show any improvement. I will take it up with team when I see them in 10 days. This is lowest part of 3 week cycle but so far the reduced dose has reduced the diarrhoea and vomiting to manageable levels. Hugs and prayers back.

[monkeygirl62 in reply to Lizzietosh]

Oh Lizzietosh, diarrhea and vomiting, oh my heart goes out to you!! Big big hugs 🤗. So still having the diarrhea and vomiting on the reduced dose? Are you taking like anti diarrhea med and Zofran? I have had to take the meds when I had some issues. I am on opiate therapy because I have neuropathy due to tumors laying on my nerve. Though some of the tumors shrunk in half I still have the neuropathy. So I struggled at first with constipation so diarrhea on Ibrance wasn't an issue except when I had to take an antibiotic for sinus infection and OMG I had pure liquid diarrhea uncontrollable and I couldn't finish the meds. Never had anything like that before in my life. I laugh now about it but don't want to go through that again.

[Lizzietosh in reply to monkeygirl62]

Yes. The reduced dose has made it far more manageable. It was appalling in the 1st cycle. But only 2 days this time and then back to constipation!!!!! I am so praying this works. In my lungs, bones and skin. Such big hugs to you. Xxxxx

[monkeygirl62 in reply to Lizzietosh]

Ohhh so very sorry it's in lungs as well and skin!! I used Miralax for constipation, worked nicely. I put it in tea and it's so gentle on my system. I had constipation before I had Ibrance. My oncologist warned me about having diarrhea on it but I haven't except for a time with the antibiotic. I have been on Ibrance 5 months and now all the side effects are happening. Ugh. I thought I was going to skate through this. No suck luck. Has your scans been clear yet?

[Lizzietosh in reply to monkeygirl62]

Havent had 1st scan yet. Booked 2 July. Keep everything crossed for me.

[monkeygirl62 in reply to Lizzietosh]

You bet I will plus prayers 🙏. Hugs 🤗

[Beryl71]

Just a tiny bit when I first started but all is fine now. I've was on same combo for three and a half years but now on 125 mg ibrance and fulvestrant. Good luck. X

[monkeygirl62 in reply to Beryl71]

Thank you so very much for the well wishes 🙏❤️! I have been on it for only five months now. Is the fulvestrant better than letrozole? That's great you were on this combo for 3 1/2 years! I hope fingers 🤞 crossed I get a long time too.

[Beryl71 in reply to monkeygirl62]

The fulvestrant worked when they thought letrozole had stopped working, so it's keeping me well now.x

[monkeygirl62 in reply to Beryl71]

Thank you, good to know for the future! 😃 Hugs 🤗

[Beryl71 in reply to monkeygirl62]

I was desperate not to come off palbo. My GP said if there's another change suggested, get a second opinion fro Royal Marsden, just to avoid to progressing through the treatments too quickly!

[monkeygirl62 in reply to Beryl71]

I too don't want to come off of Ibrance. Who is Royal Marsden? I don't think my oncologist will allow a quick progression. As it is she's been holding off on reducing my Ibrance dosage. I am on 125 mg. I don't mind going down to a 100 mg and maybe I would feel better than I do. Especially the fatigue, I can fall asleep at the drop of a hat. Lol 🤣

[Beryl71 in reply to monkeygirl62]

I'm on 125 still. Royal Marsden is top cancer hospital in London.

[Justme153]

Just a bit of info . I took Ibrance also i had a cough I had an x-ray they said my lungs where clear. But later that day they did a CT scan and found i had neumonitis which can be caused by Ibrance. Just letting you know an Xray doesnt show everything. Please talk to your oncologist and tell them of these side effects .

[monkeygirl62 in reply to Justme153]

Oh wow 😳!! I will heads up my oncologist about what you just said. Thank you Justme153 for this information, it's very important. I may just show her your post if she's reluctant to do a CT scan. I got sick the day after mother's day, so did my son and I think we both got it from his kiddo, my 3 year old grandson. And I started the nose bleeds and gums about longer a week and a half ago. So thank you again 😀!!❤️🤗 I don't have a fever, did you have a fever with the pneumoniaitis?

[Justme153 in reply to monkeygirl62]

Yes i did run a fever off and on it was so low grade that if i wasnt taking my temp with a thermometer i wouldnt know i had one.

[monkeygirl62 in reply to Justme153]

Ok so that is good information. I have not run a fever as far as I can tell. I did take my temp and no fever. Thank you 😊.

[love2golfwell]

I have been on Ibrance and Letrozole for almost 4 years. I had one or two instances of a bloody nose when I first started on these meds but no instances since. Hope you get some answers from your doctor and perhaps a dose reduction to clear this up. Sending hugs and prayers.

[monkeygirl62 in reply to love2golfwell]

Thank you for the hugs and prayers I really appreciate it!! I see her the 30th and will fill her in about all of my recent side effects. I know she can see the ER blood work and X-ray so she has a heads up since it was my oncology nurse that sent me to ER. Urgent care doesn't have the ability to be thorough with cancer patients. Thank you 😊!!

[Greatday2 in reply to love2golfwell]

Just curious, are you still on 125 dosage?

[monkeygirl62 in reply to Greatday2]

Yes but with my low platelets and neutrophils I really need to have it lowered. I see my oncologist this Thursday and I am going to talk to her about it. Each time I have my week off she keeps saying to stay at the 125 mg. But this time I am having more symptoms of side effects from the Ibrance and I want to stay on the drug so lowering to 100 mg should be just as effective. If not we can raise the dosage again.

[love2golfwell in reply to Greatday2]

Yes I have been on that dosage the whole time.

[George5545]

I would have them check your platelet count. My mom had a similar reaction to another chemo med and it crashed her platelets. Should be part of regular blood work.

I do seem to remember bleeding gums to be a known side effect. When mom started Ibrance, we had to notify her dentist of that so they wouldn’t think her mouth was having serious issues during a cleaning.

Also, look into a saline nose gel There is one over the counter, I think it’s called Ayr (in the US you can get it at Walmart). Apply at night with a q tip . This will help keep your inner nose moist and maybe avoid bloody nose.

[monkeygirl62 in reply to George5545]

Thank you George5545 for all the information!! I will definitely remember to tell the dentist that. I had blood work done and my platelets were 107, pretty low. But not life threatening according to the doctor at the ER. Thank you for the information about the nose gel. I am going to go to Walmart and get it today. My nose hurts through all this since its been going on for nearly two weeks. I am tired of the blood taste in my mouth. It's affecting my appetite and I struggle as it is with that. Thank you so much again for the help!! Hugs 🤗.

[Light74]

In 2016 when I was first diagnosed with metastatic breast cancer, my dose of 125 mg was immediately reduced to 100 mg and then 75 mg because of low platelets and neutrophils. There was NED at the next PET scan three months later. Nearly 8 years later, I am on the same medication—letrozole and Ibrance—with clear scans. My blood is tested every 4 weeks and my platelets and neutrophils are always suppressed even though my dose of 75 mg is cut to 16 tablets/28 days.

Clinical trials indicate that patients who needed a dose reduction had longer overall survival and time on the treatment than patients who did not require a dose reduction.

[genealogy74 in reply to Light74]

That is amazing. I've never heard of anyone being on it for 8 years. That is fantastic! And with such a low dose.

[Light74 in reply to genealogy74]

I am trying to set a record!

[genealogy74 in reply to Light74]

I heard that Dana Farber was going to do a study to try to identify differences between those that are not successful on Ibrance and those who are for a very long time.

[monkeygirl62 in reply to Light74]

Oh amazing!! Thank you Light74, what an incredible length of time on the Ibrance treatment brought tears to my eyes. I can only hope. Do you have bone mets only? I have visceral only lungs, liver, and right adrenal gland. Besides left breast primary 1.5 cm tumor and under armpit 6.3 cm tumor, lymph nodes in sternum and collarbone. I do have low neutrophils and platelets and have had for or 4 months now. Ugh. I will share with my oncologist the information you have given me with her when I see her on the 30th of May. Thank you so very much 💗😊!! Hugs 🤗. Oh your track record is just incredible!!

[Light74 in reply to monkeygirl62]

I hope your dose gets reduced so that your counts come up! Then take your medication and live like you don’t have cancer!