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Ibrance and nose bleed

monkeygirl62 profile image
13 Replies

Thank you everyone for all your advice and response to my issue of bloody nose and gums. I saw my oncologist and she is referring me to an ENT specialist. She wants the specialist to take a look at my upper respiratory issue that I have had since April. I will probably need antibiotics which I dread on Ibrance. I had the worst diarrhea ever when I had amoxicillin for a sinus infection in April. I told her of the wonderful responses everyone provided on my issue. I also had my blood work done and I have my tumor marker raising just when it was dropping by quite a bit. I went from 70 to 78.8 on the CA 27.29 test. It's the one she uses to monitor my cancer. I am thinking it might be this infection I think I have related to my nose. I am hoping so. I don't want to have treatment failure already on Ibrance. It's only been 5 months. My CA 27.29 went from 182 to 70 during this time now it's going up. Anyone have Ibrance stop working in like 5 months or so?

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JEE123 profile image
JEE123

I thought I replied but maybe it didn't go through. I've been on Ibrance for a year. Last week I had two cancer marker tests. One went down by a very small amount (less than a point) . The other went up about 5 points. I was pretty concerned, but read that test results can fluctuate although this is the first time mine has gone up. Hopefully there is nothing to worry about for either of us. I know they say that they look at a trend but still scary when suddenly you're grin a different direction.

monkeygirl62 profile image
monkeygirl62 in reply to JEE123

So they are monitoring you with two cancer tumor markers, yes it's a little disconcerting to have it raising at all. Hopefully it's nothing. I have a PET scan on June 20th so that will tell if everything is going in the right direction. Prayers for the markers to go down for both of us. My cancer is aggressive it grows fast. Before I was on treatment (but after I got diagnosed) I had tumors that grew over 1 cm and new spread to other organs in about 45 days. I was like I really need to have treatment ASAP. I didn't get to start treatment for 4 months after my diagnosis (in the ER). It took a long time for me to get an appointment with an oncologist because I was moving from South Carolina to Seattle area where my kids live. They insisted I move back otherwise I would have been on treatment sooner. That's why I get concerned because of it's aggressiveness. Thank you very much for your response. Hugs and prayers 🤗🙏.

HelenWi profile image
HelenWi

8 points on Ca27-29 is negligible. It really doesn’t mean Ibrance has stopped working. The only thing that tells you that you have progression is a significant change in your scan. My Ca27-29 have been all over the place (in the hundreds) but my bone mets have been stable in the scans for over a year. Please don’t worry. 😊

JEE123 profile image
JEE123 in reply to HelenWi

Thank you for sharing this experience. Very reassuring.

monkeygirl62 profile image
monkeygirl62 in reply to HelenWi

Oh okay. Thank you for telling me that, my oncologist and I both thought it was still going down (the results weren't in yet) so I was a little surprised. Hugs 🤗.

Bella_mum profile image
Bella_mum

here in Canada they don’t check the CA 27.29 as they say it’s not a clear /accurate marker 🤷‍♀️

What dosage of Ibrance are you on ? (Sorry if you answered that already but I can see your other post)

monkeygirl62 profile image
monkeygirl62 in reply to Bella_mum

I am on 125 mg. I don't think blood work is always accurate but I was surprised it went up already in just 6 months. Thank you 🙏😊.

Threadsgirl profile image
Threadsgirl

The only time my CA27-29 was above normal was when I had a gum infection. Had a root canal done and it returned to normal. Have been on Ibrance almost 4 years now. Hope it is the same for you.

monkeygirl62 profile image
monkeygirl62 in reply to Threadsgirl

Oh okay, I have had a sinus infection for quite a while now so that's maybe it. Thank you 😊 Hugs 🤗.

FloridaNYgirl profile image
FloridaNYgirl

I had problems with my nose being bloody too early on with taking ibrance and letrozole. It was not a "runny" bloody nose more like clots when I blew my nose. I too was sent to an ENT and I expected a sinus infection to be the cause since I was always prone to them. ENT did a CT of sinus and it was clear. He also explained to me that the letrozole thins mucus membranes including those in nasal cavity. Plus at the time I was using Flonase to clear my head because I was always feeling clogged. He said that compounded the problem, so I stopped that. Also he said to be careful with NSAIDs because they also will encourage the bleeding. He recommended an OTC treatment called Ponaris. I purchased it on Amazon and highly recommend it. I apply with q-tip. Its an emoillient and really helps. My gums never bled but were sensitive so I rinsed my mouth frequently with salt water to soothe.As far as CA 27.29 my norm is in the 40s. For a few consistent months the numbers were going up little by little into the 70s, so Oncologist sent me for CT. Which came back fine. My meds are in my lungs. Next month the numbers went back down to the 40s. We test my markers each month but he says its just a tool to watch, the look for a consistent climb over several months and that even a big spike in one month is generally nothing. He told me some people will have jumps in the 100s, there are so many variables with what causes the numbers to go up. Scans tell the tale. I have been on Ibrance 125 and Letrozole since October 2021. Hope this has been helpful.

monkeygirl62 profile image
monkeygirl62 in reply to FloridaNYgirl

Yes it does help very much. Thank you 😊. I know I have a sinus infection since April and I have been taking nothing for it at all. She wants the ENT specialist to do any prescribing for antibiotics for the correct one. I hope that the movement upward is just due to this sinus infection. I have an upcoming PET scan on June 20th so that will show real results. I have mets in both lungs and in liver and right adrenal gland. The ones in the liver completely disappeared. I am grateful for that. There's only one in the right lung that has not shrunk but hopefully it hasn't grown. The rest of my tumors have already shrunk in half. So I have been on Ibrance and letrozole for only 5 months. That's really good to know about letrozole that explains all the mucus in my system. I also am on eliquis and that contributes to my bloody nose and gums but I am not allowed to go off eliquis. I am tired of having bloody nose everyday. Bloody nose vs metastatic cancer I will take the bloody nose every time. Lol. It's a no trainer as they say. Thank you for all the excellent information 👍 hugs 🤗 and prayers 🙏.

kellylinkane profile image
kellylinkane

I think must be very careful to use antibiotic they killed all intestine good bacteria too which very important for support our immue systems lately i see Dr william lee video from you tube, he mention it,he was work for pharmacutical company and assisted to developed more than 50 drugs for cancer and other disease now advocate about microbiom and health.

monkeygirl62 profile image
monkeygirl62 in reply to kellylinkane

I will check it out. Yes I agree to be careful about antibiotics but sometimes it is necessary. And to take probiotics when taking antibiotics. Thank you for the information. Hugs 🤗.

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