Interstitial lung disease

[Puppy_love]

My last CT scan in December show inflammation in the bases of both lungs in the peripheral lungs. I know this can be caused by Ibrance but it’s very rare at 1 percent. I had Covid in December and this showed up in my lungs 2 days before my symptoms which were only sinus issues and headache. Again I had a follow up scan and it’s still showing up. Doctors don’t say much of course even a pulmonary doctor wasn’t too impressed. Has anyone had this side effect with Ibrance?

[Flavia100]

Yes, when I was on Verzenio.

[Puppy_love in reply to Flavia100]

How long were you on the meds and did it go away?

[Flavia100 in reply to Puppy_love]

I think I was on prednisone for about two months. I managed to gain 20 pounds while I was on the steroid. But they took me off And I know take Ibrance.

[Puppy_love in reply to Flavia100]

Did your lungs clear up?

[Flavia100 in reply to Puppy_love]

Yes

[Jhshl512]

I was just on ibrance for 6 months. It didn’t work for me. However, I had Covid and ended up with fluid in my lungs which they called pleural effusion. I had the fluid drained and tested. My pulmonologist told me he was sure it was cancerous, but after testing the fluid, it WAS NOT! So I do believe it was from Covid. That was over a year ago and the fluid hasn’t returned. No doctor would confirm that for me. It’s just my opinion. I hope this helps.

[Puppy_love in reply to Jhshl512]

Thanks for that. Mine is inflammation and I’m hoping it’s not from Ibrance. Covid is so tricky. I never had any coughing or shortness of breath.

[NPmary in reply to Jhshl512]

So glad it was NOT from cancer!

[Jhshl512 in reply to NPmary]

Me too! Thank you

[Puppy_love in reply to Jhshl512]

Me three 🙂

[life8888]

I was hospitalized with pneumonitis just after starting 125mg ibrance. Symptoms were shortness of breath, low grade fever and swelling feet. My oncologist at the time said I should go to the ER with those symptoms. In the hospital they said my WBC was something very close to 0, and I got better after three antibiotics. I was then reduced to 75mg ibrance and didn't have it recur.

[Puppy_love in reply to life8888]

Wow that seems scary. Thanks for sharing.

[kokopelli2017]

hi puppy-love.1% is still 1 out of a 100 women. i do not consider that to be 'very rare'. just my opinion. interstitial lung disease is non-reversible and i would not take that lightly. not saying that is what you have, but i would dig deeper....maybe this inflammation (that has still not gone away) is a pre-curser to something more serious. not trying to be alarming and as i said, just my opinion. just thinking that maybe this needs to be investigated further. 'sqeaky wheel' so to speak.

peace,

carole xo

[Puppy_love in reply to kokopelli2017]

I work in a Breast Center and have had 5 doctors already that have looked at my scan. So far they all agree that it was from Covid which is still hard to believe. I know ILD is fatal so I’m hoping on next 3 month f/u it’s lessened.

[kokopelli2017 in reply to Puppy_love]

well you have certainly been pro-active. happy to hear you have had 5 docs check it out already. wishing you the best...xo

[Puppy_love in reply to kokopelli2017]

Nice to meet you. Thanks I appreciate the feedback. I am still not certain it was from Covid. But I’m not going to stop until I get the answers. XO

[kokopelli2017 in reply to Puppy_love]

good to hear👍. and nice to meet you too....xo

[Puppy_love in reply to kokopelli2017]

Hope you’re well and not having any complications. This MBC is really tricky. [e-mail]

[kokopelli2017 in reply to Puppy_love]

it sure is! thanks for the email address....xo

[Mcangel11 in reply to kokopelli2017]

Agree she needs to look more into it but it is reversible.. mine was bad and returned to normal..I did alot of research on ( I am a nurse of 40 years) it said I would just get it back and if bad enough it can be terrible so I felt comfortable with going off Ibrance altho scary.

[Puppy_love in reply to Mcangel11]

How long were you off Ibrance? And so you go on a different med?

[Mcangel11 in reply to Puppy_love]

I have been off 3 months and not on a new med yet . Waiting to see my new cat scan results.T he other chemo equal to ibrance has same side effects...

[Puppy_love]

Thank you so much for this reply. It’s been extremely informative much more than my doctors. Hugs and stay well

[Half-Full]

My wife developed pneumonitis from iBrance after being on it for 26 months. My wife’s symptoms (cough, shortness of breath) and the ground glass opacities in her lungs on her scans (more generally described as ILD) were present for months before the diagnosis was ultimately made. Even then her oncologist was reluctant to agree with the hospital staff as she had never seen it before. We’ve unfortunately found that many practitioners are quick to dismiss “rare” conditions and side effects, especially if they’ve never seen it before in their patients. In my opinion, from the countless hours of research I’ve done, I believe pneumonitis is much more common with CDK4/6 inhibitors than originally thought. There are cross toxicities and other conditions that can make someone more susceptible as well and this is not well understood.

You can search for my other posts if you like that go into more detail about my wife’s struggles with pneumonitis. She’s still recovering after 13 months.

If your practitioners can’t articulate their rationale for dismissing the risk of it being pneumonitis in a compelling and convincing manner, keep asking questions and/or getting other opinions.

Hopefully you’ll figure this out.

[Puppy_love in reply to Half-Full]

Oh my goodness this is very scary. I’m so sorry to hear this. Honestly no doctor I’ve conversed with even knows the side effects of Ibrance, I do my own research. I hope they get to the bottom of this. The problem is most of these meds have similar side effects including lung toxicity. I hope she’s better and it reversed some. Best wishes and yes I’m interested in reading her story.

[Rotagirl in reply to Half-Full]

Hi half-full, your wife's story sounds so familiar. I have shortness of breath, a dry cough and 'ground glass' has been mentioned re my lung scan 18 months ago. As this has got worse recently I think I shall have to consider giving up palbo/ibrance I have been on it for3 1/2 years. What is your wife on now? Fay

[Half-Full in reply to Rotagirl]

She’s BRCA2 positive so we moved to PARP inhibitors. There are two out there that I know of, Lynparza and Talzenna. She started with Lynparza but had a bad allergic reaction to it, another “rare” issue. She’s been on Talzenna now for approx. 12 months. Seems like she might be slightly allergic to it as well (itching, rash on back) but it’s no where near as bad as the Lynparza (her throat started to close up) and it’s worked very well. Her scans are still stable but her tumor markers have increased over the past two months. Her tumor markers have been good indicators of progression in the past so we may have to make another change soon. Xoleda is probably next. Watching ERSO and other MBC therapies come to market is excruciatingly slow.

[Half-Full in reply to Rotagirl]

3 1/2 years on iBrance is a good run. Please be aware that recovery from most cases of pneumonitis takes a very long time, and not to be an alarmist but it can be fatal. My wife has needed supp O2 for the past 13 months. She’s only recently started to wean off of it. Everyone is different but knowing what we know now, we would definitely move on to another targeted therapy or oral chemo with your symptoms and scans, especially since you’re already beyond the median PFS for iBrance so you might have to make a change based on progression in the near future anyway. I know how difficult these decisions are, they consume me/us. Wishing you peace, comfort and wisdom.

[NPmary]

My docs (fair geralization to say most docs) don't act impressed about lung findings that don't give symptoms, l have interesting lung disease from radiation nodules small from cancer - no one's excited because lve never reported shortness of breath (have some now with exertion).It's upsetting to get new findings but it can be OK to have findings that aren't really meaningful in terms of life/death and cancer. F*** cancer.

[Mcangel11]

My Interstial showed up after 2 years . My B Orton oncologist and pulmonologist took me immediately off Ibrance and my lung cleared . I am only on exemethisine right now waiting for my 3 month cat scans to see the effects being off chemo... Nerve racking

ROX

[Puppy_love in reply to Mcangel11]

Is the new med working?

[Hidden]

Yes. I have interstitial lung disease. 3 breathing meds later and the pulmonologist has been sly and in cahoots (found out they’re friends) with Onc to actually blame the Ibrance!!?? To what end I’m not sure. Yes it is a major symptom and sadly permanent. Many blessings.