G' Morning!
I am being driven up a UK motorway and the wife of a friend has just rung me...
My friend aged 73 with CLL currently in a UK Hospital. He was told the CLL caused a pleural effusion.
How would CLL do that, if indeed it does?
By way of treatment he has been offered a chest drain or pleural glue. Any thoughts?
What should he do?
This is a real live problem?
Any shared wisdom? Any similar experiences?
Thank you!
Jig
Any helpful advice on the related posts there Jig (if you can access them). I know this has been discussed in the past week.
Newdawn
Ta I'll do it at home Newdawn, on my phone just now, on the move. Birding! 😅
Jig
One key trick is to differentiate between pleural effusion and pulmonary embolism (PE) .. The latter can lead to some effusion.. Treatment differs;
You drain one, you blood thin for the other.
I had a PE classified as submassive bilateral PE treated last December - fortunately, the team settled for blood thinning regime; after a pleural drain (huge) needle has been inserted, blood thinning becomes a risky option..
How did it get to happen?
Malformed gamma-globulins (I think) caused nephrotic syndrome (large sizes getting stuck in kidney nephrons - structure of fine blood vessels that do all the filtering, eg. of protein from the blood)
Result: frothy urine - loss of blood proteins in to urine - proteinuria
Problem caused: thicker blood - risk of clotting (also likely fluid retention - oedema)
--
And this is how my SLL treatment became urgent; blood thinners resolved my PE / helped prevent further clots..
SLL treatment put a stop to the bad gamma-globulins
and very gradually my kidneys are improving.. with any luck..
I still have proteinuria and blood thinning medicine 9 months later..
So I still have follow up appointments with renal doctors and with thrombosis doctors.. The latter are looking for complications of the PE event; possible pulmonary hypertension..
I hope your friend gets the correct diagnosis.. A history of oedema; a history of frothy urine without UTI; a history of finding hot weather very trying.. All these might suggest proteinuria..
Doctors need to quiz for history of DVT - does the patient remember symptoms that could have been a DVT that could have resulted in PE?
Good luck.
Thank you! It's a worry, and real and present issue. Jig
Just to add.. Chest X-ray is inconclusive -- it shows areas of lung filled with 'fluid'; could be efflusion or PE clots with efflusion.
CT scan gives answers.. (In my case, the type of answers that give the medics pause for raised-eyebrows and a few OMGs.. whilst this patient would sooner have been less special)
They started blood thinning treatment before sending me for CT scan, so I presume the diagnostic leap was not so great, but PE can present differently -- all of it presenting real dangers to life.
Doctors tend to presume patients report all symptoms, but with the best will in the world, some symptoms just appear to be more of the same .. 'a bad day' -- presuming there was no DVT on the basis the patient would have reported it.. danger zone right there.
---
Birding..
What bird are/were you pursuing today?
Anything really! Here in the UK its quiet for birds, winter will see more.
I did see 20 Cattle Egrets though. Only ever seen 3 before.
I was hoping for some Bearded Tits.
On a good day, 60 species can be seen.
Starling murmerstions begin next month! There are something to behold.
Jig
Hi.
I was diagnosed with a pleural effusion (PE) in Sept 2017.
I was diagnosed with CLL in Sept 2014 but, at the time of my PE diagnosis, I had been on Ibrutinib for just 3 months. I had been through one session of FCR in April 2017 but the FCR worked a little too well for me and caused me to become severely anaemic, hence the quick change to Ibrutinib!
(I've given you this short, boring "timetable" in case any parts of my CLL journey show any similarities to your friend's.)
Anyway, as I said, I was diagnosed with the PE in Sept 2017 after visiting my GP with an annoying cough that wouldn't go away. I was due to go on holiday the following month - husband and I were going to Florida for some sun and fun - so I wasn't happy about the timing of the PE at all!
The fab medics at my local hospital quickly arranged for a partial drain of my lung - quite a simple procedure where I sat on the edge of a bed whilst the doc inserted a needle, attached to a tube. The procedure took around 30mins and quite a lot of fluid was removed. This enabled me to breathe a little easier and I duly packed my bags and flew off to Florida, with an appointment to go back to the hospital for a "proper job" on my lung upon my return.
I was fine on my holiday - occasionally a little breathless but, given a minute or two recovery time, I was able to function as normal...just maybe a little slower than usual!
Following a chat/consultation with the docs, I went back to the hospital, in Dec 2017, for the "glueing" procedure you mentioned your friend has been offered - I think my procedure was called a "pleurodesis". (I guess this may be the same procedure that your friend has been offered, but obviously I can only tell you about my experience.)
I was in the hospital for a couple of days following the procedure whilst I had a drain in my lung to get rid of the excess fluid lying around. The pleurodedis procedure itself was performed under a local anaesthetic (along with some other drugs!) and, whilst I'd describe it as an uncomfortable experience, it wasn't particularly painful. The procedure involves inserting some talc (not quite like the stuff in your bathroom, I suspect!) between the lung and chest wall (which is the space where fluid gathers in a pleural effusion). The two surfaces are then "glued" together, meaning there's no space for any fluid to gather in future.
The fluid taken from my lung was tested, but contained nothing sinister, other than those blasted CLL cells...no surprise there, I guess!
I had a few regular follow up appointments at the hospital, including x-rays, but the procedure has been wonderfully successful and my lungs remain free of fluid...hooray! I was fully discharged from the hospital 12 months after my procedure and have had no problems since (fingers crossed!).
I've been fortunate enough to have had several holidays since my lung "adventure" - Spain, Finland, Abu Dhabi, Costa Rica, Florida (again!) - I have worked full-time, been to concerts, sporting events, restaurants, pubs(lots!). I do the housework, some gardening, weekly "big shop" at the supermarket, etc., etc....in other words, normal life.
I've been fine since the pleurodedis and feel lucky to have been offered it as treatment.
To this day, neither me, nor the medical experts, know why I experienced the PE. It doesn't appear to be a common side effect related to CLL or any particular medication - perhaps your friend and I are just unlucky!
Please pass on my good wishes to your friend - I hope my story might help him make a decision on the best treatment for him and his PE.
Debs 🙂
Thank you!
Gosh! You have had a lot going on!
So pleased a normality has resumed.
My friends situation has eased. The chest Drs given care over to the Haematologists. He is getting a drain!
Best wishes
Jig
That's very good news - I'm sure your friend is in the best of hands and will be back on form very soon!😀
Onward and upward!
Have a great day.
Debs 🙂
JigFettler,
The Pleural Effusion can be an influence of CLL or treatment as the result of a compromised immune system. In any case it is serious and requires the oversight of a pulmonary specialist who is informed CLL literate. The sooner that the issue is addressed the better the outcome.
JM
Thanks. I am still searching for the mechanism underlying the pl effusion formation. My concern is heart failure, given age, lack of fitness, Hb 85 and AFib.
I'll chase up a progress report.
J
Yes, I am not sure that it can be defined precisely.
Good luck and post if you find a resolve.
JM
CLL and the NHS in the UK
CLL and Surgery (not CLL treatment )
CLL and Dizzy spells
CLL and Cold Blood
Depression and CLL
