My wife has been on iBrance and Faslodex for two years. Over the past four months her CA 25-27 tumor markers have increased from 52 to 229. Her bone mets still appear stable and the only thing showing up on the scans are ground glass opacities in one lung. The first two ground glass opacities completely resolved on the last scan but there were a half dozen other ground glass opacities and lesions in different spots. The radiologist report classified this as inflammation and/or infection and did not suspect it to be related to metastatic spread so her oncologist is dismissing this. The oncologist also feels that they can’t safely biopsy what is showing on her lung scans.
With her tumor markers up more than 4-fold in the last 4 months were not comfortable dismissing this and we’re starting to consider post iBrance treatment alternatives. She’s BRCA positive so Lynparza will probably be our next step before Piqray (which seems to have much worse side effects).
Has anyone had similar experiences with ground glass opacities in their lungs, and if so were they confirmed to be metastatic spread?
I would also be curious to hear if anyone has had a significant rise in tumor markers that were related to something other than metastatic spread.
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Half-Full
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My tumor markers rose steadily to over 700. We stayed with the Ibrance and Letrozole and did scans but they continued to rise. My doc said it meant that something was lurking that wasn't showing on the scans yet and 3 months later, a few new lymph nodes showed involvement. I have mets in my lungs but they have never been described as above and Ibrance seemed to shrink them. As for next treatments, there will be much better responses here from our resident experts. I am now on Faslodex and we might add Verzinio if markers don't start to go down.Bless you for being so involved in your wife's treatment - I would put my husband on this board but I think it would stress him out worse than he is already..the treatment change was very stressful for him. I wish we had a caregiver's board here for him.
Wow your husband sounds like mine. I can actually handle the news of progression or rise in tumor markers or a higher phosphate count on blood work. I know treatment may have to change as I go along. But I dread telling my husband any type of change as he just goes to pieces can't sleep gets depressed etc. I worry he will have a heart attack from his stress level.
I think that’s a good suggestion for family members to join the other board you mentioned on SHARE. I believe this board is more appropriate for those of us who have metastatic breast cancer.
I agree that they need support, but I do think this board should be reserved for those of us with metastatic disease. I wouldn’t really want my husband on here. I can express myself more freely without worrying about him. Some of my thoughts might upset him.
I was diagnosed with mets earlier this year in lung, liver and some bones. My first CT report came back as showing ground glass opacities in the right lung where I have a deposit of cancer. My oncologist said that the ground glass appearance was expected in someone who had recently had covid or pneumonia. Its another story but we do believe i had covid last Christmas.
I had been on tamoxifen for 4 years by the time of CT but that was my only recent treatment which i know can cause inflammation in the lung.
Subsequent scans have shown improvement in my lungs regarding the ground glass appearance but I still have the mets.
Concerning tumour markers, mine have gone up and down since starting treatment so I haven't really gotten to grips with how they reflect my cancer as I know they aren't definitive for everyone.
I'm sure someone else will be along to answer your query much more clearly.
I developed something called interstitial lung disease while on Ibrance in 2016 and it was described that way by the radiologist's scan report. Ibrance can cause lung damage so figuring out what is going on can be a challenge. My lungs are now permanently damaged and I get out of breath very easily. I don't know how much most oncs know about this and when it happened to me, the drug company was not as aware of it as a side effect as it is now. I have been in continual treatment for MBC (bone mets only so far) for almost 17 years and that is the only big problem I've had with med side effects.
Hi Half-Full,I've recently started to have some extreme lung problems. I initially dismissed my cough to spread to my lungs as my tumor markers were increasing while on Ibrance, however my scans actually showed "ground glass opacities" & a decrease of metabolic activity in all other areas The radiologist and onc could not rule out metabolic spread, but thought it unlikely. I have since (2/24/22) come off of Ibrance. 1 week of Z-pack, 1 week of Methylprednisone, followed by 15 days prednisone. I have not had any improvement in symptoms- just wondering if you have any advice for me. I have yet to see a pulmonologist, just exhausted with shortness of breath and cough. Thanks in advance,
Julie, I didn’t realize I hadn’t updated this old thread. There are are other threads where I offered more current info on my wife’s experience with this but I’ll try to summarize here so you don’t have to search for the other threads.
My wife’s ground glass opacities continued to get worse and it turned into severe interstitial lung disease.
Antibiotics and oral prednisone did not clear up the dry cough, which progressed quickly to shortness of breath, and she ended up in the hospital after her pulse ox dropped into the low 70’s.
Her diagnosis was complicated by the fact that cancer cells were found in the pleural effusion from her lungs. The inclination from some was to simply conclude that all of this was due to cancer spread. We resisted that conclusion. These things are rarely that simple. With a lot of research, advocacy and debate, the primary diagnosis of her ILD did in fact turn out to be pneumonitis from the iBrance. We still do not see any evidence of cancer in her lungs on her scans but there were cancer cells in her malignant pleural effusion so there is almost certainly some degree of spread to the linings of her lungs but that does not seem to be the cause of her ILD.
Extremely high doses of dexamethasone (a steroid thats a bit different than prednisone) gradually improved her condition. Unfortunately, she was tapered off the steroid too quickly when she was discharged and she quickly relapsed and extremely high doses of dexamethasone had to be used again.
The steroids saved her life but it took her close to 10 months before she could completely taper off and a full year before she was able to wean herself off supplemental O2. Long term use of steroids saved her life but they wreak havoc on your body over time. She had every side effect of long term steroid use, they’re very debilitating, but they also gradually subsided and resolved after she was tapered off. Her recent scans have shown that her ILD has largely resolved.
It took a while for us to find a pulmonologist that was familiar with pneumonitis. Those that do not have first hand experience with it will likely struggle to be of much help. And we’ve found most physicians are quick to dismiss it as a potential cause as the literature continues to imply it’s extremely rare. I do not believe it’s as a rare as the clinical trials implied.
To put this in some perspective, while my wife’s experience was almost fatal, and her quality of life suffered greatly for a full year during her recovery, I’ve read posts from others who have said they’ve had ILD from iBrance that has spontaneously resolved without stopping it, and others who have said they’ve had ILD that has remained stable while staying on iBrance.
Advice from those whose experience with pneumonitis from iBrance that was not as severe as ours would likely differ, but I would suggest you find a good pulmonologist as quickly as possible. Your experience so far seems to follow pretty closely to ours. Antibiotics and low dose steroids have not helped, and it does not seem to be caused by metastatic spread. So it does seem like there’s a strong possibility that the iBrance might be causing your issues.
Keep a pulse oximeter on you at all times so you can periodically objectively assess how you’re doing. They’re relatively cheap, and a $40 pulse oximeter likely saved my wife’s life. I’m not a doctor but 90 is where our doctors get concerned. My wife was qualified for a continuous use supp O2 machine at home after she couldn’t maintain 88 or higher while slowly walking.
There are options after iBrance, but I understand how difficult it is to know when to make a change.
I hope some of this is somewhat helpful. I’ll keep you in my prayers.
Please let us know how you make out.
P.S.: Of course, make sure you’ve also ruled out Covid. My wife’s pneumonitis presented in a very similar fashion to Covid. We had a radiologist even assume her lung condition was due to Covid after reviewing the imaging and incorrectly concluded in the radiology report that it was “Covid lung” (apparently radiologists do not review the blood tests on hospital patients to assess whether their assumptions are valid). All Covid tests were negative during both hospital stays.
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