Yesterday I arrived at Mayo for a procedure my interventional pulmonologist and I had been discussing this winter. As you may have been bored to death by my many posts on my situation (on LLS discussion board) I will keep the review as short as possible. Nothing new in the review, if you know my history feel free to skip to YESTERDAY.
In October 2009 I was switched to 100mg dasatinib due to severe liver toxicity from 400mg imatinib. In February 2011 I started experiencing dyspnea and pain with deep inhalation. An x-ray showed a very small effusion. I was not taken off dasatinib at that time and within two weeks I had a grade III PE. Dasatinib was then withheld and I had my first of two thoracenteses. Within 9-10 weeks my effusion resolved and dastinib was reduced to 50mg.
All was well until October 2018, 6.5 years later, when I again experienced dyspnea. I immediately withheld dasatinib until I could return home (camping at Custer State Park in SD) for an x-ray. Again grade III PE. At this point, my oncologist at Mayo got Pulmonology involved and the Myeloproliferative group and after much discussion, it was determined that since I was doing so well on dasatinib that every effort should be made to keep me on it and see how I do at a much lower dose and to insert an in-dwelling catheter (PleurX) that would allow me to drain at home and hopefully introduce spontaneous pleurodesis. PleurX catheter was placed in mid-December 2018 and dasatinib was lowered to 20mg daily.
No go on the spontaneous pleurodesis. (I was/am resistant to talc pleurodesis being allergic to pain and I couldn't find much long-term success for non-malignant PEs) My drainage amounts were slowly going down and I was able to retain -4.5/-5 logs on 20mg so my dosage was again reduced to 25mg every other day - I wanted to use up my remaining 50mg tabs and then would go to 20 mg every other day. Stayed at transcript level above.
Did I say this would be short? Sorry!
End of September 2020 I finally tossed in the towel on dasatinib. Very hard to do because as much as I hated it at the beginning I grew to appreciate how relatively well I felt on it and the PleurX has improved my quality of life immensely.
October 2020 started 150mg nilotinib twice daily. Maintaining CMR. No side effects worth mentioning. This brings me to yesterday!
YESTERDAY
Dr. Kern is doing case studies on situations of chronic pleural effusion that he is treating with this procedure. He has written up the seven or so he had done by 2021 and thought of me. All of his cases are different - different cancers - pleural, breast, lung, liver, ovarian, one with chronic pleural effusion of an unknown origin and I am the only person with a drug-induced pleural effusion. Success has been on different levels, too. All have had successes of varying degrees of a few months to no recurrence in one, the PE of unknown origin. I intend to be the second so please keep your fingers crossed and keep me in your thoughts!
My procedure consisted of draining fluid, then having 10ml of the corticosteroid injected into PleurX port followed by 30ml of sterile saline. I didn't have to do handstands or somersaults , the process of breathing is enough to move the solution throughout my pleural cavity. I did develop some discomfort with deep breaths on the way home that persisted through the night. It appears to be better this morning. I will send daily updates on my drainage through the Mayo portal.
If this works I could have my catheter removed within the next week or two. I also made him promise that if the PE returns I could get another catheter. I like to hedge my bets!
As I've said in the past we are all guinea pigs on this TKI bus, but I hope somewhere down the line my experience can help someone else.
I've included the only two papers on this steroid infusion procedure that I could find. The Japanese study helped Dr. Kern in determining the amount of triamcinolone to use. The other is about one man with eosinophilic exudate effusion. That type of exudate is more responsive to steroids - mine is a lymphatic exudate.
https://www.cancerjournal.net/article.asp?issn=0973-1482;year=2017;volum...