Info on likelihood of lung damage from ribociclib after permanent lung damage from Ibrance

[PJBinMI]

My onc is having my cancer cells tested to see if they are still E +, and suggested fulvestrant plus ribociclib if theyare. I was on Ibrance, another CDK blocker, for a few cycles in 2016 and developed Interstitial Lung Disease, which my pulmonologist described as being like "gunk between the air pockets."

Does anyone here know anything a bout side effects from similar drugs, particularly these meds, being more likely after being present before? Has anybody here needed to stop one CDK blocker due to lung issues but been able to take another without lung issues?

[Bettybuckets]

hi PJB- as you know I am following along closely… I was on Ibrance with some slight signal that it was starting to fail so he did a quick biopsy of the Lymph node in my neck and read the tea leaves and could tell I was still able to espouse to estrogen so then he switched me to verzenio and that has been good for past 7-8 months. I didn’t have Interstial lung disease but they were always watching for and listening in my chest for it.

Anyway I wanted ti chime in as my MO said because it seemed that the Timor would likely still respond to estrogen, he wanted to switch CDK4-6 inhibitors and then sounds just like what your MO is doing.

[kokopelli2017]

hi Pam.

I have always been sad/upset that you endured ILD disease from Ibrance. I personally declined Ibrance due to the possibility of that side effect...was just too scary for me. I had several lung infections, while doing chemo for primary BC, that landed me in the hospital twice....once for an entire week. I could not breath and so scary. so I figure my lungs are sensitive and I did not want to take the chance. I find it mentally difficult to endure side effects from 'the treatment'. it doesn't make sense to me. side effects from the cancer itself makes more sense. it just seems contradictory for 'treatment' to be potentially harsher than the cancer. I did chemo, surgery, radiation for primary and pretty much decided I would not do harsh treatment if the cancer was to arise again....which it did in 2017. I am on hormone blockers (I am er+) only for past 5 years....first letrozole and recently switched to fulvestrant. I believe the hormone blockers to be the heave lifters....and a lot cheaper. sorry to go on and on. (although I am overdue on checking my present ER status). please understand that these are my personal thoughts only. no judgment intended. and I realize many do not share my opinions.

I will mention that all of the three CDK blockers have a risk of ILD as a side effect. but you probably already know that.

best wishes....

carole💛

[PJBinMI in reply to kokopelli2017]

Have you seen a pulmonologist? (lung speccialist) If you haven't you might want to. I have a history of developing pneumonia and when I told my pulmonologist about that and said I view my lungs as "weak" and he told me that my lungs are actually quite "strong" from having survived all that, as well as the ILD.

[kokopelli2017 in reply to PJBinMI]

very interesting that your pulmonologist mentioned that your lungs are quite 'strong' in view of your history (pneumonia and ILD). that surprised me....counter intuitive. I have not seen a pulmonologist but perhaps I should, per your info. I have a history of respiratory infections, even before the cancer.

best wishes💛

[Pbsoup]

I do know that the different CDK 4/6 drugs all work with slightly different mechanisms--otherwise they wouldn't have passed the patent process. Each seems to have unique sets of side effects to worry about. I would raise this with your doctor (but you know that).

[Half-Full]

PJBinMI: I’m surprised to hear your oncologist is recommending another CDK 4/6 inhibitor after developing ILD from iBrance. I can only share our experience. My wife was on iBrance for 26 months and she developed severe pneumonitis, a form of ILD, from it. Her blood oxygen levels plummeted and were in the low 60’s when we got her to the ER. She barely survived, and was on supp O2 for a year afterwards. It sounds like your bout with ILD from iBrance was short lived and you quickly made a full recovery (?) but it can be very serious.

The conventional thinking is if one CDK 4/6 inhibitor would cause ILD in a person another one would as well. It may not be an identical drug, but it’s the same class of drug with the same mechanism of action. After my wife’s ILD I learned that there are many drugs that have ILD risks, not just CDK 4/6 inhibitors, although the CDK 4/6 inhibitors do have a significantly higher risk than most others. So my prior research was more focused on whether my wife, who had ILD from iBrance, would be more susceptible to ILD from other classes of drug with ILD risks.

I read a lot of studies and honestly only found one or two that addressed this “cross toxicity” risk. They did find some evidence that cross toxicities do exist. In other words, if you’ve had a prior onset of ILD from one drug, your risk of developing it from another drug would be higher than what the clinical trials on those other drugs would suggest. Potentially significantly higher. This was 2 years ago though and I’m not sure I could find those studies again.

There’s one site out there that does a great job at chronicling drugs that have risks of ILD/pneumonitis: pneumotox.com/drug/index/

After what my wife went through other CDK 4/6 inhibitors for her were considered way too risky for her. Even if we had asked her oncologist to try one of the other CDK 4/6 inhibitors (which we did not), she would have refused to prescribe it. My wife was the first case of CDK 4/6 induced pneumonitis that her oncologist had seen. However, there were other options (Talzenna and now Xeloda).

I hope some of this is somewhat helpful, you’re asking good questions.

[PJBinMI in reply to Half-Full]

Thank you! I appreciate the info you have shared. My lungs are permanently damaged. My pulmonologist described ILD as like "having gunk between the air sacs" of the lungs. I use oxygen at night and that has helped both sleep and my energy level, bbut I have a hard time breathing when the air is humid and I get out of breath easily. It concerns me that my onc suggested another CDK 4/6 inhibitor. I'll probably refuse it.