I have been NED for almost 10 months taking Ibrance and Letrozole.
Yesterday my latest Ctscan results came back still no definite evidence of metastatic disease but a findings in my lungs says there’s an ill- defined ground glass changes and peribronchial nodules that could be infectious/inflammatory in nature.
Since I will be meeting my onco two weeks from now, I would like to know if anyone knows what these mean? Is this the start of my lungs being affected by Ibrance? I have read here that some developed pneumonitis or ILD. I’m just kind of worried since I’m really doing well with my combo meds in terms of side effects and would like to stay in these for so long.
I would really appreciate to hear feedbacks from those who have experienced this. Thanks a lot!
Thelma
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Taurus28
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I’m an MSK oncology nurse and to my knowledge this isn’t indicative of cancer it’s more so of infectious origin/ inflammation. If you have no concerns with breathing/ oxygen is good/ etc. then I feel like it’s just something to keep an eye on
I am on Ibrance and letrozol for 3.5 years.Just had CT done yesterday and i still have ground glass in my lungs .It was mentioned 2 years ago in report . It gets worse and better off and on . I saw a Lung doctor and he told me not to worry if i am symptom free and it is prob there since i had covid in dec"20. I was really worried i had to get off meds but im doing great and hopefully stay on this combo for years to come.
I’m glad that you’re doing well on this combo. I hope and pray too that I can be on these meds for a long time. My oncologist said that if it’s still there on my next scan, she’ll refer me to a lung doctor too. Thank you for sharing Anitafazz!🙏🥰
I developed pneumonitis after only 3 months on Ibrance. I did have a cough, it was different than a normal cough, more wheezy sounding, though at first I thought it was a cold. I self diagnosed that I might have pneumonitis and then the petscan showed that I did. I’m now on Piqray with no lung issues.
Your oncologist will likely see your scan and I’m sure they’ll let you know if there is a problem even before you see them, so try not to worry in the meantime. It’s great that you have done so well!
Hi Helen, I’m glad that Piqray is now working for you. My oncologist called me yesterday and said that I should not worry but we will keep an eye on it. Thank you for sharing!
Good question! When I was first diagnosed with MBC last Sep, my oncologist had me tested for the Pic3ca mutation and the actual test was negative but showed that I had a variant of that mutation in the Pic3ca pathway. After I had to stop Ibrance, he checked with the test lab and decided to try Piqray anyway. After two months it appeared to be shrinking the lesions. I did wonder whether it was Fulvestrant alone doing the job but he didn’t think so. (I’ve read that 40% of people with the mutation get negative results from the blood biopsy. But I only have small bone mets so we can’t really do a tissue biopsy to know for sure.) Having said all that, a couple of months after the good scan, the new scan is showing some lesions continuing to shrink but a couple new ones, so we’re going to zap those with radiation; the goal is to try and stay with Piqray as long as possible. I’m starting to get used to all this uncertainty but it’s not in my nature … I want to understand why things happen!🤣
If we know the worst of it we can try to deal with it in a concrete way. It is always the unknowing that causes consternation.
I tested positive for Pikray. The oncologist wants me to do Ibrance instead. She maintains that Pikray has the most side effects. It does seem to target the liver. I am still sitting on the fence but need to get off pretty soon.
I believe that Ibrance (or similar, eg Verzenio) is generally considered as first line treatment, with Piqray as second. The big deal about Piqray is that it can raise glucose level, which fortunately it hasn’t for me but I *am* definitely watching my sugar intake. I was apprehensive especially because I wasn’t even sure if I had the mutation and because I read about the glucose and potential diarrhea. I did get a rash which went away with Claritin and for a long time my mouth felt like I ate an unripe persimmon🤣. I don’t know that this helps because we all react differently but at least you have sone info from someone who has taken Piqray and survived!
Good luck with your decision. The good thing is that you have two possibilities and if one doesn’t work, you can try the other.
i had ground glass changes show on a scan, my oncologist said it could have been a chest infection or covid showing up. All signs had gone on the next scan though so hopefully your next one will be clear.
Hi China40, that’s what my oncologist told me when she called me yesterday. That the findings is non specific and hopefully it would be gone on the next scan. Praying that I won’t develop any symptoms. Thank you so much!
My Father died from lung cancer even though he had not smoked in more that 60 years. After being diagnosed with breast cancer, my oncologist wanted to get a CT scan of my lungs. I had some shadowing, and nodules on my lungs. The oncologist thought that it was sarcoidosis, but ordered a lung biopsy just to be sure that there was not lung cancer. It was not cancer.
Any chance that yours could be something like sarcoidosis. Take a look at what sarcoidosis is on The Mayo Clinic site, or one of your choosing.
Thank you for the response Colleen! I just looked up Sarcoidosis and will definitely keep an eye if I develop symptoms related to it. I’m glad that your lung nodules are not cancerous. Thanks.
while every case is different, what you describe as “groundglass” is a lung inflammation that happened to me on Xeloda. It is irreversible and not a good direction. I had to discontinue it and go on just Faslodex. I had a lung biopsy and there was cancer there as well as nonspecific inflammation. My lungs were already so compromised as my MBC started out with severe canceros pulmonary effusion that required 6 months of Plurex catheter. While Xeloda seemed to “cure” the effusion it also caused the ground glass to the point my oncologist called a halt to it. If you have to discontinue Ibrance there are other options. MBC is tricky to manage, there are many trade offs as we seek to buy time. Yesterday I got a port for second time as my veins are too scarred to get blood tests, CT’s etc. Even so I consider my QOL quite good as I’m able to do many things I love even with modifications. Find your joy…in spite of MBC. Love to you all 💞💞💞
I’m so sorry about your lung biopsy. I know that this journey of ours is so overwhelming and sometimes an isolating experience but it’s important to know that there are people who care and are with us every step of the way. We are lucky that we have various treatment options available.
Thank you for your response, your strength and resilience are very inspiring! Yeah we need to seek joy in everyday moments of this journey!🥰🙏
I recently had ground glass opacity noted on my CT scan. My onco said it could be due to Ibrance, inflammation or infection. As I was scheduled to get a valve replacement, she wanted my lungs in the best possible shape. She put me on an antibiotics, and two weeks later my scans did not show any sign of ground glass opacity. She said if it had been caused by Ibrance, it would not have completely cleared in two weeks. I went on to have a successful valve replacement 5 weeks ago.
I’m glad that your ground glass opacity is not due to Ibrance. That’s what I am praying too because I’m doing great on these combo. Congratulations to a successful valve replacement!
Thank you for sharing, I feel relieved now after hearing from you awesome warriors that I am not alone in this struggle!🙏🥰
I am also thankful for Ibrance everyday! They recently found inflammation on the left ureter…no sign of cancer cells in the urine, no masses on the CT scan, just the inflammation. I will have a cystoscope at the end of the month. Hoping it’s ok! I’m very positive it will be…I have a cough I’m concerned about but it just happens occasionally. I think I’ll try some allergy meds since my lungs look great on my scan. I hope you get it figured out!
One thing that I continually say is…stay positive and just keep fighting!! I love my husband , boys and two dogs…life is so wonderful and nothing will stop me from LIVING!
Hi LaDonna! It’s awesome that Ibrance is also working for you. My oncologist said that it might be just an infection or inflammation, as long as I don’t have any symptoms, she’s not worried. I will be having another ct scan after 3 months and hope and pray that it will be gone!
I like your positive outlook in life, true, by focusing on the things and people that bring us joy and gratitude , we can find solace and strength amidst the uncertainties that this cancer brings.
Understand how you feel. I was on Ibrance for over 4 years. After awhile I became use to it. My oncologist took me off in November due to really low white count. I was very nervous at first. A month ago I started to realize how much better I feel. My brain is no longer fuzzy and the pain in my bones has decreased considerably. I’m getting scans every 3 months and so far nothing new. I see my doctor in August. I’m going to tell her I don’t want to go back on it. I’m still on Femara, hoping that works for awhile.
Good luck. I truly believe, each person is different and you have to make your own choice. I’ve also decided, “quality of life is more important than quantity of life “.
Hi sancarlos, thank you for sharing your journey. I’m glad that getting off on Ibrance has made a positive impact on your quality of life! I just hope that I can stay in this combo for so long since in terms of side effects, Im quite doing good. Im undergoing cancer rehab now and plans to go back to work soon.
Good luck to you too and let’s keep our hopes high in the Lord!🙏🥰
I was on Ibrance and Exemestane for just under 5 years. I had to stop taking them. The side effects and pain from extended low white blood cell count was unbearable. My health got better and I feel much better. I am no longer in 24 hours of pain. I also had no quality of life. Don't know what the future holds, but will face it with courage. Good luck to you and may God bless you and me and keep us in his grace.
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