Hi, JERRY has been on Imbruvica about a year and recently had a pet scan showing fluid on lung. They drained 2 1/4 liters of red fluid this time. Was sent out to test.
Results showed no cancer cells, but Dr didn't tell us so we asked. Figured that was a good thing, but didn't get that feeling from doc?
Jerry new his lung refilled again 3 weeks after the first drain cause of breathing problems. They just drained 3 liters of blood fluid. Sending out again.
He has had Ct scans pet and X-rays since on the medication. Wouldn't they see a tumor in the lung?
He does suffer with shoulder, left back rib pains etc. He has lost a lot of appetite and some weight.
I'm starting to get really scared after searching the internet.
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deb1610
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Deb, it appears from your previous post that Jerry has had bleeding problems in other areas. I have not been treated nor do I think I know enough to say more than this: There are bleeding side effects to Ibrutinib. Is your Hema/onco a specialist in CLL? Are you saying the Dr. has not told you why the bleeding is happening?
I will leave any more to be said by those who know more than I do. You and Jerry are in my thoughts.
DR took the place of our dr of several years, and yes we go to a Cancer specialty center. And no this dr has no ideas, that he is telling us anyway , why this is happening. That's why he's doing th tests. I think he wants to rule out other problems before stopping the Imbruvica.
Hi. I had similar experience when within 2 months of starting Imbruvica, first I had Fungal infection in lungs and then after 45 days water in right lung with pain on right shoulder till ribs. Fortunately my Onco worked with Respiratory Team and after stopping Imbruvica started antibiotic treatment. They extracted ard 0.500 litres of fluid with blood. Thereafter my breathing became normal but lost ard 10-12 KFA weight plus loss of appetite-- similar to your experience, however they found that the extracted fluid consisted of 44% lymphocytes thus related to CLL.
Now am trying take max of protein diet and have regained ard 5 kgs of wt, and now back on Imbruvica,
Well as it turned out, JERRY had about 2 more lung drains. Very short breath as if drowning. CLL doc called in a Thoracic Surgeon and that's all she wrote.
Surgeon planned on just going into lung with a scope and take material for biopsy. However he was unable to see anything. He ended up cutting and did a decortification - scraping off lung which was calapsed.
Biopsy showed CLL IN EVERYTHING.
After a year on Imbruvica he was taken off because of the pathology report and now trying Zydelig.
First Dr said it would be the Z pill twice daily along with rituximab infusions, but then said JERRY could try just Zydelig alone.
He is soo ill from operation and CLL SYMPTOMS
Anyone know anything about this treatment.
My first post describes our beginning But I can't find it
Wow .. Jerry has had a rough time of it. And our CLL can be invasive and show up in places we wouldn't expect. I had a benign breast cyst removed about six years ago and got a call from my surgeon .. she was concerned that there was CLL in the cyst lining. I explained that it gets around. Chris D. seems to be doing very well on Zydelig and I've been reading about more who are just going with the pill and not the Rituxan. Wishing him all the best. I've had my share of lung surgeries and know they take it out of you. Some times you just need the knock out meds to get on the other side of the pain. (I still take Gabapentin because of neuropathy from my thoracic surgeries .. to access the lung, if they can't do VATS, they go through the ribs after stretching them for access. It takes a while for the nerves to re-root themselves when they cut the muscles.)
My husband has had very similar experience. Fluid on lung that was being drained frequently, all the tests....Was told CLL related. One thing to be careful of - at one point they drained 2 1/2 liters and then let him leave to drive home. Within 30 minutes lung collapsed and filled up with fluid, luckily called 911 quickly and paramedics arrived and intubated. He ended up in ICU for a week. He now has a drainage tube in his lung that he drains daily. Still being told CLL related, but no CLL found in fluid. We have a Hematology Oncologist specialist and now are also seeing a thoracic dr. Same as Anilbhard - rapid weight loss and trouble eating. Very troubling.
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