Question for long timers on Ibrance....

[Aimee95]

I am on mo 27 with Letrozole/Ibrance combo. I know I am very lucky I have had stable scans since starting. I just had scans yesterday and I am still stable with no progression but......chest scan said I now have "mild emphysema". I am wondering if others have experienced similar lung issues being on Ibrance for extended period. I worry they will change meds to stop lungs from worsening. I have read that the benefits of Ibrance out way the issues it causes to lungs... But I don't want to go through all this just to die of emphysema. Any insight?

[Aimee95]

Thank you so much for your insight! My oxygen levels are good 97 to 99%. Both of my lungs are full of innumerable spots of cancer called ground glass pulmonary nodules-biopsy in 2018 confirmed it's breast cancer so I feel wheezy at times and have slight wet cough anyways. I don't want to jump ship since it seems to be working. In October the lungs said... " mild patchy and linear increased density involving predominantly the dependent aspects of the lungs bilaterally most commonly representing atelectasis." Each time scans say something different... not consistent. Maybe it's whoever reads the scans...same facility but maybe different docs? Just nervous I guess hearing the term emphysema...like I need more crap to deal with. I meet with oncologist on 28th and will certainly get her opinion and already messaged my Dr from COC protocol to get her input as well. Thanks again! Hugs 🤗

[Beryl71 in reply to Aimee95]

That's all very interesting as I had breathlessness and fluid before diagnosis and starting Ibrance from enlarged nodes and disease in my lungs, and all that has now gone. Fingers crossed it doesn't return in another form. I'm on 10 th month. X

[Lilykristymichael in reply to Beryl71]

This is all very scary toMe. Thank you for this information . Although I have not experienced this, I will be watching for symptoms. I will also discuss with oncologist. My dose of Ibrance has been reduced to 75 due to fatigue. What dose have you all been on? And would dosage make a difference? My best to everyone.-Madlyn

[Aimee95 in reply to Lilykristymichael]

I am also on 75. My neutrophils could not handle anything higher. Even on low dose it is sometimes too low. A constant struggle I know you are familiar with 😉

[caw517 in reply to Aimee95]

Hi! I was wondering how low your neutrophils drop to. I've been on Ibrance for almost 5 years( in the spring). The fatigue keeps getting worse but I keep going with the Ibrance anyway. I am on 110 and we have begun to discuss dropping it to 75.

[Aimee95 in reply to caw517]

They are usually between .7 and 1.2. as long as it at least 1 I can start next cycle otherwise I have to wait an extra week.

[PJBinMI]

I'm a long timer with MBC and the CDK inhibitors were not around yet when I was first diagnosed, with bone mets from the beginning. I got almost five years from Letrozole alone, along with Zometa for the bone mets. Then I got over 9 years on Faslodex. I was on Ibrance for a few cycles in 2016, before the FDA added those warnings about lung damage, and ended up with permanently damaged lungs from Interstitial Lung Disease. I get out of breath very easily and cannot stay outdoors when its humid. I'd suggest that you see a pulmonologist to have a lung "expert" look at your scans etc and give you an opinion. Personally, I don't think Ibrance had any benefit for me at all, and certainly nothing that made it worth the damage to my lungs. I have that ground glass appearance on scans and nobody has suggested it is emphysema. I have had to add two inhalers to my daily meds, albuterol and breo.

Aimee, you are off to a good start with treatment. When a first anti-estrogen treatment works for those of us with estrogen receptor positive cancer cells, that bodes well for our doing well for quite awhile. Years, not months. I'll celebrate 17 years with mbc in 6 weeks and of course I've not known before now that I would live this long! But I have become much less worried about the little details of living with this lousy rotten cancer. I hope you will do well with or without Ibrance, but do get your lungs evaluated by a pulmonologist.

[Aimee95 in reply to PJBinMI]

17 years!! That is music to my ears!!!I am thrilled for you!!! Thank you for sharing your insight. You are right I need a lung expert!!

[Timtam56]

Firstly let me say how thank full I am for you women in this suite yet again. Both you Aimee and all of you longer timers who are so knowledgeable.I'm always learning.

Aimee. I'm 2.5 years on 100mg ibrance and letrozole. (Actually was changed over to anastrozole a cousin of letrozole because letrozole was possibly caught me to have trigger thumb.)

I've mostly been going so well but for a few things for all this time. But after my last blood test, and check in, I started to develop a very deep, wracking, cough with (sorry for the descriptive) phlegm and a need to get it up. I have in the last few days started to think maybe the "spots" they have mentioned I have on my lungs are now ramping up.?!#? (The cough reminds me of what I have had after having bronchitis and trying to clear my lungs.)

Now reading your post Aimee! Thank you for your question....leading on to this wonderful insightful conversation.

I will now so some research.

And keep you all posted.

PS. Not a great time in history, when out and about, to have a wracking cough!🤪

[hurricaneheather]

bc mets to right pleura and lung with malignant pleural effusion in July 2015. the body has been on the same line of treatment since Aug 2015: Ibrance, Anastrozole (changed from Letrozole in 2015), and Zoladex (changed from Lupron in 2020). other than the 'challenges' related to the mets dx, there has been no change to the lung; see a pulmonologist yearly. NEAD since Mar 2016; next PET/CT scan 1 March....