My wife is on 50 MG Dasatinib and has got again Pleural Effusion in a span of 4-5 months since Pleural effusion first came into being. While it is evident Dasatinib is showing its side effects we want to know if it will be OK to shift to imatinib. If yes, in what dose.
She was first diagnosed in December 2020 and was on 100 MG Dasatinib till in June /July 2021 when she first got rashes.
We were consulting 2 Haematologists till that point, and we were suggested to be on steroids for a while. After a while, in September 2021 the rashes appeared again. This time they were intense. One of the haematologists recommended we change the drug to imatinib. As we had achieved the undetected status in July 2021, we were a little reluctant to change the drug despite her body/face swelling up due to edema.
We also had read posts of Scuba and others on how 50 mg was working fine for them, and we were able to convince one of the doctors to try a lower dose. Since October 2021 we were on Dasatinib and were able to maintain the undetected status.
In October 2022, Pleural Effusion was first detected, and each lung had a litre of water in it. The doctor advised us to be on off drug. We took some steroids, diuretics and were able to address the pleural effusion in 20 - 25 days.
Considering we had a fair result from Dasatinib 50 mg for a over a year and we were off drug to address Pleural Effusion we asked doctor if we could extend being off drug for some more time as we wanted to store embryos.
As we are almost 37 with no kids , we knew the chances were getting less for us hence we took a chance to extend being off drug and undergo IVF process to store embryos for later. The process lasted for 30-35 days but it wasn’t successful. Before starting this IVF process to only store embroy, we had tested undetected in the BCR ABL Test. In January, after being off medication for 2 months , we started the 50 mg dosage again in January 2023 and after in March 2023 ie 2 months on being on medicine we redeveloped Pleural effusion. This time it was only in one lung at 500 ml approx. Again, we have been asked to be on steroids and diuretics till this goes away.
In our previous meeting with our doctor, he suggested we change the drug to either Imatinib or Nilotinib. Also, doctor said that since the CML has come back in a short span of time it it unlikely we can ever go on TFR.
We are confused now on what to do next. Which drug to choose. A little disheartened with the CML resurfacing and anxious if being off drug for a while and undergoing IVF to store embryos for later has spiked CML %
Should we continue to be on Dasatinib and monitor pleural effusion since the drug has worked well for us OR should be change the drug once the pleaural effusion settles.
Hence seeking guidance.
Scuba, David, Alex – Seek your inputs.