A year ago I had a CT scan to assess my CLL which confirmed my anxieties that I was beginning to relapse. In April/May it became very clear that I would need to start treatment very soon due to a low HB(70) and low platelets (32) I was covered in bruises, lacked energy to be able to teach for a full day . So a further CT scan was done pre beginning treatment and they found a change in my lungs ..it was as if someone had thrown glitter at it ..and to all intents and purposes , looked like metastasis of the lungs.so lots of scarring However, I had had COVID in March and April( the joys of being a primary school teacher) and had paxlovid both times.
Due to my poor blood picture, it was decided that I should start treatment ( Rituximab and venetoclax) asap and the lung situation monitored and hopefully respond to treatment as there was discussion it could be cll in the lungs.
A mid way CT scan showed no change to the lungs but an excellent response to the lymph nodes with bloods improving.
I had a lung biopsy before Christmas but it showed necrosed tissue, inflammation and some lymphoma cells ..
No one can explain the scarring fully ..I keep going back to COVID but they tend to not agree with me.
They are now talking about a lung wedge biopsy to find out more .
Any thoughts anyone? Feel so much better. Bloods are pretty good apart the old neutrophils. No specific lung symptoms ..no cough etc walked 9 miles the other day ..
I suppose I am confused and anxious and want answers and want it over .
Thank you x
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Bethan49
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Bethan, I don't have any answers unfortunately and sorry to hear about the troubles you are going through but just wanted to say how much I admire you - I am a primary school teacher as well with 3 kids ...how the heck were you able to work with Hb of 70! A hat off to you, honestly. I hope they find the answers they are looking for. Are you worried about having the biopsy? I would probably go with it and had it done as if that's the way to get some answers, I would want them. You know our bodies can let us down sometimes, we feel good and yet we are sick...I wasn't sick when I was diagnosed...so I would probably just trust the doctors on this one. Please keep us updated! Hope it is nothing worrying, I too would believe it could have something to do with covid but we are not doctors, right. All the best.
Bethan, although not knowledgable in this area, I can report that my younger sister (65) recently had a wedge resection of right lower lobe laparoscopically for a rapidly growing lung nodule which fortunately was benign and is now gone. However, the surgeon told her that the recovery would be long and painful and that he would be intentionally cutting some sensory nerves in the surgical area to help control the post-op pain. Three months later she still has significant discomfort which she is told could go on for up to 6-12 months. Ask more questions of the need ( risk v benefit )and this doctor’s experience regarding your likely recovery time.
I hope you can see this as I put it on a reply to poodle.
Thank you so much . I have had a lung biopsy under a CT. I don't relish the thought of a lung wedge biopsy I must admit BUT will trust the doctors . I have had excellent care so far so no reason for it to not continue . . X
Hi Bethan pleased to hear things are now going well for you. I hope the lung issue is resolved soon. I am fine thank you just reached year 5 on the flair trial, 1 year to go. I hope to do the static trial after this 🤞.
I am not a medical expert, but I do remember news about "ground- glass opacities" showing up on scans of people who have had Covid. I wonder if the "glitter" you mention on your scans could be this. I have included some info below that is fairly easy to read and understand but there is more detailed (and complex) information available from medical sites if you want to do further research. It might be worth asking your doctors if this could be the cause of your "glitter" on the scans before agreeing to any further lung biopsies.
What Do Ground-Glass Opacities Look Like?
According to Isabel Oliva Cortopassi, MD, senior associate consultant at Mayo Clinic and former chief of thoracic imaging at Yale Medicine, ground-glass opacities indicate abnormalities in the lungs. "Ground-glass opacities [are] a pattern that can be seen when the lungs are sick," said Dr. Cortopassi. Normal lung tissue appears black on a CT scan, but GGOs are lighter-colored or gray patches, Dr. Cortopassi added. Those lighter patches don't completely obscure the other structures in the lungs, said Jennifer Possick, MD, a Yale Medicine pulmonologist—which makes them different from lesions associated with lung cancer, which can often appear as solid. With GGOs, "there is haziness seen overlying an area of the lung, but the underlying structures of the lung (airways, blood vessels, lung tissue) can still be identified," said Dr. Possick. It resembles, well, ground glass, which is still transparent but has a matte finish.
COVID-19 and Ground-Glass Opacities
While GGOs can be seen on chest CT as a result of a range of lung diseases, they tend to be more prevalent with lung damage caused by COVID-19 infection than other lung conditions.
Residual Ground-Glass Opacities
A 2021 study published in The Lancet Respiratory Medicine included people hospitalized for COVID-19 and had GGOs on initial lung scans; the researchers rescanned their lungs at three and nine months following hospital discharge. Researchers found that 78% of patients had residual GGOs at three months post-discharge, and 24% had GGOs still showing up on scans at nine months post-discharge. In another 2021 study published in the Lancet, researchers looked at one-year outcomes in COVID-19 hospital survivors. They found a decrease in GGOs by 12 months and that 78% of patients still had some GGOs showing up on lung scans.
I also have lung involvement. I was diagnosed in 2018, had FCR 2019, have been well until now. My lymph nodes started to grow 2 months ago and my consultant is considering Rituximab and venetoclax even though I feel fit and we'll. She is awaiting FISH test and PET scan results. When I was going through the initial tests for diagnosis I had a number of scans and biopsies to determine the abnormal look of my lungs. They were just as you describe yours. In the end I had a VATs biopsy and they have determined that I have Sarcoidosis. It doesn't need treatment at the moment but certainly affected my breathing when I had Covid.I do hope that they find out the cause of yours. Best wishes. X
Floxxy, How did they determine it was Sarcoidosis from the biopsy? It is such a tough disease to diagnose.
I was diagnosed with CLL/SLL (via more scans, blood work, and biopsies) after a bunch of lung nodules were seen on a cardiac scan. Non-lung biopsies showed non-necrotizing granulomas in addition to the CLL. I met with a Sarcoid specialist who was unable to make a definitive Sarcoidosis diagnosis “since the non-necrotizing granulomas were discovered at the same time as the CLL/SLL, and not prior, it could just be the body’s inflammatory response to the cancer.“ Unless I start exhibiting symptoms, he doesn’t want to see me. They never thought most of the lung involvement was CLL/SLL and about a year after finishing V+O treatment they significantly reduced in quantity and size.
Bethan49, was Sarcoidosis ever mentioned in discussing what they see on your lung scans?
I think that they had the same dilemma with my lungs and thought that it could have been CLL but decided that it was Sarcoidosis in the end, not sure exactly why. X
Hi Bethany. Please check with your doctor about the ground glass opacity. I would be surprised if that is what it is though.
I had GGO last February and March. I could not have walked 1 mile, let alone 9! It was difficult to breathe. I could not sleep in a bed, I had to sleep upright on a couch for nearly 6 weeks. It slowly dissipated and a scan in June showed it was almost completely gone.
The appearance on the scans was more cloudy looking, not glittery.
Hope the doctors can figure out what it is and treat it successfully!
Nice to hear from you again but sorry this is such a difficult time for you,.
I don't have any experience of lung problems like yours, but wanted you to know I feel for you in the uncertainties you face at the moment. Hopefully some of the replies you've had above will be helpful.
I must admit that a "lung wedge biopsy" sounds rather intimidating. Hopefully the doctors will make the right decision as to whether it's appropriate or not, and explain their reasons for it. I'm not surprised you feel confused and anxious.
Good to hear you have no specific lung symptoms. Well done in doing a 9 mile walk recently! (That's more than I've been able to do for a long time!).
Also great that your bloods and lymph nodes are improving (with the Rituximab and venetoclax).
I also had Covid last April/May. After a week of Covid infection, I became exhausted and very sleepy, with no appetite for food but for sleep. Thank God, I had a scheduled appointment with my Oncologist after about 10 days of staying home and being lethargic. I thought that these were the symptoms of Covid. When my Oncologist looked at me, she immediately sent me to the ER to get a priority and to be admitted to the hospital,(Canada). Otherwise, I would have to wait, God, only knows how long to be taken to the unit where I could be diagnosed. Anyway, upon admission, I was hypoxic and hypoxemic. All my organs and their enzymes were affected. Starting with my brain (I hardly could speak and did not remember names and events) my lungs were full of fluid, and my heart, liver, pancreas, and even muscles (I had difficulty walking), everything were affected. I got many, many different antibiotics IV, but nothing seems to work, and I continued to have a high fever. Finally, I got diagnosed with ORGANIZED CRYPTOGENIC PNEUMONIA and was put on steroids for 6 weeks and it worked. In the meantime, I have all possible biopsies from almost every organ, but NO BACTERIA OR VIRUSES WERE DETECTED because it was the inflammation caused by the disorganized and overly eager immune system. It was an autoimmune response to the SARS virus, and my body went overboard due to my messed up immune system. And although, "cryptogenic" means of unknown origin, one can only speculate if the origin was indeed unknown or caused by SARS. After 6 weeks of prednisone, I was slowly weened off the steroid, and with physiotherapy to teach me how to walk, especially stairs, I slowly became my own self.
I have made a mistake here, I was hospitalized for over 8 weeks, but on prednisone for 6 months. I was monitored every month for the level of fluid in my lungs, and finally, it was all gone just before Christmas.
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