pleural effusions

[tedrog]

TKI s can cause pleural effusion.

At what point would the CLL Dr attempt to address pleural effusion, or, how bad does it have to get to trigger the Dr to try anything?

[SofiaDeo]

I would go see a pulmonologist. Much like you would be referred to dermatology if you developed skin issues, or infectious disease would be consulted for serious infections, and a cardiologist for those type of effects. Unless a process is blood/bone marrow sourced or affected, I would seek a specialist for that organ/system. Instead of depending on my CLL specialist to manage it.

When I had lung lesions show up, their first thought was "rule out malignancy" then they punted to pulmonology.

[tedrog in reply to SofiaDeo]

these are caused by the CLL Dr’s prescription.there are protocols that can be taken. less, break, change, stop med.

they would be the ones (after many years i might add) to advise.

as i said: TKIs can cause pleural effusion. pretty sure i said that in the op.

[SofiaDeo in reply to tedrog]

CLL doctors do not treat all organ systems. Just because a drug being used to treat a CLL, doesn't mean a particular side effect will always be managed by that specialist. Or if the CLL is suspected to be affecting another system, specialists from those systems will be consulted.

I saw what you wrote about TKI's and I offered my opinion. Based on, when I had lung problems under treatment, after pulling in the lung cancer specialists to rule out malignancy, my doc then wanted a pulmonologist to weigh in. Similar to how when I developed skin problems on ibrutinib, I was sent to a dermatology practice that included a Moh's specialist. And also based on years participating in Oncology rounds, when working. One of those was as the Oncology Pharmacist at a VA hospital, where one of the nurses received that state's Oncology Nurse of the Year award. So they were more on the "better end" of the spectrum IMO in terms of patient outcomes and quality of treatment. I have been fortunate to have often worked in places that used a multidisciplinary approach. Minor side effects the docs were comfortable treating, but for certain severe ones or those unresponsive to initial efforts, they wanted input from doctors specialized in those organ systems.

So again, I would say if your CLL doc seems not concerned but you are, see someone experienced in treating the various causes of pleural effusion.

[tedrog in reply to SofiaDeo]

who pulled in the lung cancer specialist?mine doesn’t say anything. I SAID: “ so I guess if you won’t do anything which is what the nurse said when she called me about this then I just wait till I show up in the ER then you might do something is that right?“ Their reply, “right.“ When I called Moffitt Cancer Center they said, “stand your ground.“

So in your case according to what you wrote your oncologist pulled in the other specialist my not doing anything. I’m going to look into going back to Moffitt.

I already have a bad track record with these people when they tried for two years to get me to take Imbruvica. finally I asked them if they were CLL specialist and shouldn’t I talk to one of those before I start the medication they said OK and four months later I went to Moffitt. I asked the doctor at Moffitt should I start taking this medication. He said no wrong medication because you also have CML and that Hass to be started right away. The previous doctor had missed that I took a lawyer to talk to him about that after that, my sister. So I’ve had bad experiences with these people.

they may not manage other organs but if their name is on the prescription they are to at least be concerned or if the cancer that they’re treating is causing the problems again they are to at least be concerned and as they did in your case calling other specialist.

But I’m not here to argue. Thank you all very much I’ve got what I need

[SofiaDeo in reply to tedrog]

That's correct, my current CLL doc will ask for input from others when really odd things start occurring, and has never dismissed any of my questions or concerns. I have had similar to what you are going through with a former CLL doc not thinking my concerns/side effects important and IMO brushing me off. So I feel for you, it's tough. I hope you can get it sorted quickly.

[Jm954 Administrator]

Is this a hypothetical question tedrog or do you have an effusion that you're concerned about?

[tedrog]

have, have had, have now, yes.

maybe someone here has been through it? support forum, right?

—and i carry a ‘hypothetical ‘badge’, so watch out!

[rafew]

CLL on its own can cause Pleural Effusion. It was why I began my first chemo. That said. I would think your Doctor would need to evaluate if it is drug related or advancement of your cancer. I hope it is resolved shortly

[JigFettler Volunteer]

While CLL may cause pleural effusions, it would be essential to establish that, one would not want to miss an unrelated cause, be it another malignancy, infection or a spurious cardiac issue.

SofiaDeo is correct. In the UK we call them respiratory physicians. Your CLL doctor would know this.

Jig

@

[tedrog in reply to JigFettler]

and, yes, my VA primary care is trying to get the pulmonary people from the VA to call me but again I can’t get there without a driver either. So they’re going to try to get me somewhere on the outside. Of course with the VA they could take six months or just never happened at all.

yes I have a TAA aneurysm but the one at the rate of growth apparently is not concerning. This was picked up about three years ago in an overnight hospital stay when I woke up and felt only fill my lungs halfway. It lasted about 24 hours and I pass the stress test 10 out of 10 even after having no sleep at a crowded hospital and for 24 hours before that only being able to fill my lungs halfway. that self resolved in 24 hours and may I’ve been a reaction to something that I tried briefly. (a cannabis vape pen, from a dispensary). Anyway that’s the only thing that might’ve been it’s gone and never came back. That was over three years ago.

I believe my lungs have been fine because I can actually tell the reduction in my right lung now. It’s like having a sail and now you don’t have as much sail To catch and hold the wind. I only really notice it if I exert myself which frankly I hardly ever do!

Thanks again, just rambling on some more information

[SofiaDeo in reply to tedrog]

When was the last time you saw your vascular surgeon? If by TAA you mean a thoracic aortic aneurysm repair, perhaps you should be reassessed.

vascular.org/patients-and-r...

[tedrog]

thank you both I did not know that. All my research shows that is because of my medication. The reason I asked in this form is because this is the absolute best form on the Internet and because I have CLL and CML. another reason I asked from this form is because the doctor at Moffat Cancer Center who originally prescribed me Dasatinib So that it showed some efficacy on CLL as well so he chose that one — All just to say I figured it was OK to post here because the CML forum just doesn’t work well.

I never knew that the cancers could cause the effusion I thought specifically this is absolutely caused by the medication.

My cancer doctor doesn’t seem to care whether I have a pleural effusion or not.

I had a CT scan several years ago that indicated some pleural effusion and I ran that by as office and left a copy and never heard anything about it. I see them every three months. For the last five or six years maybe longer. I got an MRI for my back and the guy immediately took me to the doctors office as he saw a large pleural effusion. He told me to contact my doctors immediately.

I contacted my cancer doctor and they told me and this is very strange I think: “ we haven’t seen the MRI and we wouldn’t do anything anyway.“

So I called Moffitt Cancer Center which I don’t have really anything to do with anymore and I told them that exact quote and I asked them what I should do I was seeking information on the situation. The nurse that returned my car from Moffitt said “stand your ground“. Well I don’t have any ground to stand on because my doctor at my last appointment I told them I pretty much to do so nobody’s gonna do anything and I should just go to the emergency room if I have a problem and then maybe somebody will do something is that the ticket? They said yes.

now I find out that from you guys just now that it may indeed be the cancer and not just the medication. I think it’s the medication but nevertheless I did not know that.

I’m strongly considering trying to get back to Moffitt but I have to have a driver to drive me 200 miles to get there as I have problems driving over long bridges with water under them.

Thank you all very much

[SofiaDeo in reply to tedrog]

Do you have a patient advocate at the VA you can ask for help in dealing with this situation?

[BeckyLUSA in reply to tedrog]

I can sympathize. I too have trouble with high bridges. I had to drive from San Diego over the Coronado bridge to get to the Del Coronado. I almost had to pry my fingers off the steering wheel when I got off that thing! There are a couple in Florida that I just can’t drive over. Thank goodness my husband does most of the driving! I can close my eyes til we are across. Good luck finding the true cause of the Pleural Effusions. I know from experience with my brother that the VA, while it can do great work, can also be a real pill to deal with.

BeckyL USA

[Ptown]

Good morning Tedrog, I read your posts carefully and while I cannot add much to the pleural effusions conversation, I did have an idea about how to manage the lengthy car ride. I live just south of the 5miles long Mackinac Bridge and know of many people who just aren’t comfortable driving across it. Our bridge authority has staff to help drive people across. Not sure if the bridges you need to traverse offer those services. If not, perhaps you can explore contacting the Veterans of Foreign wars posts or the American Legion posts near the bridges, to ask for volunteers to help you get across the bridges. I am certain they would be happy to help out.

Please let us know how you are doing as you seek answers for your health.

Best, Carolyn

[studebaker]

I did have bilateral pleural effusion and I had trouble with breathing and laying down. I was admitted for Venetoclax rump up when my doctor came to see me and prescribed diuretics and referred me to pulmonogist who was going to do drainage after I had an X-Ray to see how the diuretic works.

It did work and cleared the effusion so no drainage. I still take diuretics now, but that is because of my heart trouble.

I think you should insist on getting referral. Good luck.

Dana

[mnmnewtons]

My CLL specialist insisted I had pneumonia and for 2 months gave me antibiotics. I insisted that I had pneumonia before and this was not pneumonia. I had trouble breathing and a modest cough. Finally he took another look at a CT scan I had earlier and got the message. He quickly ordered a thorocentesis. About 2 litres later my symptoms were gone and the effusion minimal. I read that Pleural effusion is common in CLL. Go figure that my expert oncologist missed that one.

[mnmnewtons]

*thoracentesis

[skinkade]

I had pleural effusion prior to starting treatments, I ended up having my lungs drained several times. My oncologist sent me to the pulmonary doctor.

[tedrog in reply to skinkade]

How did/do you know when you need to drain?maybe it’s a: oh, you’ll know, thing. ?

then again I’ve read that people can live fine on one lung.

do you know if any permanent damage can be done by letting it go or go too long?

Thank you, skinkade