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Water Retention in Lungs

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Hi Scuba, Alex, David, 

We got an X-Ray and Ultrasound done for my wife and it shows water retention of up to 200 ml in each lung. The doctor has advised pausing the medication (dasatinib 50 mg) for a while.

She was on dasatinib 100 mg since December 2020 but due to severe skin rashes, we requested the doctor to reduce the dosage to Dasatinib 50 mg post reading posts of Scuba. Since August 2021 she is on 50 mg. 

While I understand this is an expected side effect of the medicine is 200 ml water retention normal or is this on the higher side? Are there any precautions/ medication to get away from this water retention?

I am slightly worried and confused about what to do next. Please guide.

Also, she isn't taking any health supplements fearing drug interaction and is usually low on energy and hence no physical exercise. As such please guide me on what should be added to diet and health supplements. 

Thanks

Hi there,

Sorry to hear about your wife’s pleural effusion. It’s a fairly common side effect of Sprycel. And some other TKis for that matter.

As I understand it pausing treatment usually resolves the issue but it can return. Maybe reducing to 20mg might fix that problem from returning. Scuba/David are a bit of an expert when it comes to Sprycel and I think he will be best to respond.

Your doc is taking the right step for the time being. It could well mean if the fluid on the lungs keeps returning then a change of drug may be on the cards. You’ve got a handful to try so no immediate risks for your wife. I am sure she’s in good hands.

Out of curiosity what is her latest BCR IS reading? If she is stable remission lower end of MMR 3 or MMR 4 I’d push for another dosage reduction to see if she holds the line and no return of the fluid on the lungs. My consultant once had a gentleman who kept getting these and eventually stopped treatment and is tfr. You can read about this here https://www.kentonline.co.uk/folkestone/news/amp/dad-cured-of-cancer-fol...

All the best.

Alex

Hi Alex,

Thank you so much for your response. Yours, Scuba, David's replies are always awaited and built so much of confidence. 

I am waiting to hear from Scuba & David as well. 

Her brief history  - She was diagnosed in Dec 2020 and her reading was undetected in October 2021. Since then she is undetected ( BCR ABL is done every 3 months). She started on 100 mg Dasatinib in December 2020 and in September 2021 she got skin rashes all over. We were consulting 2 hematologists and one wanted to change the drug to imatinib while we were able to convice the other hematologist to reduce the dose to 50 mg (based on Scuba's inputs).

Since October 2021, she is on 50 mg and undetected. I will go to the heamtologist with the refrences from Scuba's posts and the link you have shared. I am not sure if the hematologist will be convinced to bring it down to 20 mg but we will try our best. 

Scuba - What would be the ideal time when we can look for a TFR.

Thanks 

 

SS86, I'm sorry to hear about your wife's pleural effusion. I have had a long history with pleural effusions starting back in 2012. She should remain off Sprycel until her effusions resolve.

Since she is already on a lower dose it may be that dasatinib may not be for her. However, I would try to convince your doc to allow her to try 20-25mg. I would bet that would keep her at undetectable, but whether it helps with the effusions remains to be seen. If necessary, I would recommend a switch to nilotinib rather than imatinib unless there is some other health reason not to.

From earlier papers I've read, rash can be a harbinger of effusions.

50 mg. worked quite well for me for 6.5 years until I once again developed a pleural effusion. My dose was reduced to 25mg 1x/day (to use up my 50mg tablets), then to 20mg 1x/day and then to 20mg every other day. I remained undetectable but I could never get the effusion to resolve. Mine was in one lung only. After trying a Pleurx catheter for almost 2 years which allowed me to drain the fluid myself, I switched to nilotinib. That seems to be working well for me at 150mg 1x/day. Many of us have done well by just reducing the dasatinib dosage, I hope that works for your wife. Good luck!

One of the ironies with patients who develop pleural effusions is they usually have fantastic response to the drug overall before they had to stop treatment. The fact your wife is "undetected" affords you an opportunity to test which drug dose is best. It is likely to be very very low. How does 20 mg every other day sound? I eventually had to lower my dose to 20 mg and my response to sprycel went UP. Eventually I went to 20 mg every other day before stopping completely.

It is important for her pleural effusion to resolve first. And during this time, monitor bcr-abl monthly to test for relapse. There is a chance her "undetected" status may very well hold, but that is unlikely given the short time involved, but it will give you and she a sense of how quickly her CML returns. It could be a month or much longer (or never). Once she becomes detected, then restarting low dose sprycel is an option at 20 mg every day or even every other day. A follow up PCR test a month at a time will confirm if that dose is working. If it is working, then monitoring for a pleural effusion return is key. If pleural effusion does return, then sprycel, unfortunately, is not for her. But many patients who find the right low sprycel dose escape pleural effusion coming back. Switching drugs at that point is likely to work very well as in Hannibellemo's case.

After 3 years of "undetected" status, testing for TFR is a definite possibility.

I hope this is useful.

Thank you for the reply, Hannibellemo. I will try my best to convince the doc to 20 mg dose.

She was on 100 MG before ( for almost 8 months) before the skin rash hit her twice. The first time we controlled it through steroids as we were not aware of the rash as an outcome of dasatinib. The second time the skin rash came we stopped the medicine for 2 weeks and then continued on a lower 50 mg dose ( basis guidance of Scuba). While the doctor was not convinced but somehow agreed.

Thereafter no significant side effects came ( some were like severe redness of eyes, pain in bones at times etc) and then this pleural effusion came in the picture. 

Scuba, Thanks for your reply. Your replies are always useful to all of us. 

I have an appointment with the doctor but I am not sure if he will be convinced to a 20 mg dose on an alternate day. Last time we had a tough time bringing it down to 50 a day ( post your guidance). Since she has had a good result on Dasatinib, I am a bit inclined to continue to try Dasatinib on a lower dose before switching to another drug considering at 100 mg she had a severe skin rash within 7-8 months but thereafter at 50, there were no significant side effects till now (12 months). Also, with just a few drugs available the mind says to have reserves for the future. 

However, I am not sure if the doctor will be convinced that a lower dose can reduce pleural effusion. I tried to download some reference documents for my doctor but wasn't able to find any. If you can share any links which may help convince the doctor to a lower dose it will be really helpful. 

Also, in case the doctor switches to another drug should that be a full dose (as it will be a new drug) or will that be a reduced dose since she has had an undetected status for an year now. 

Also, can you gide on some supplements which you have found to be useful and the dosage for the same and some links which I can show to the doctor to get these supplments prescribed 

THANK YOU SO MUCH, Scuba. 

Since your wife is "undetected" dose interruption to allow PE to resolve followed by low dose re-start is what research is showing can be effective.

As mentioned before, patients who develop PE's are often very responsive to dasatinib and do not need high dose dasatinib in order to achieve excellent response. The risk of low dose leading to CML progression is very very low (I know of no case). If low dose doesn't work, she can switch to nilotinib.

I take the following:

Curcumin C3 complex (2 grams now, but 4-8 grams early in my diagnosis)

Vitamin D3 (7500 IU's in winter, 5,000 in summer) - goal is to maintain ~70 ng/ml (60 - 100 range)

Vitamin K2 (200 mcg minimum)

Magnesium (taurate or citrate) 400 mg split in two doses

selenium (200 mcg per day OR 2-3 Brazil nuts)

vitamin C (500 mg twice a day)

None of the above requires prescription.

 

 

Thank you so much, Scuba.