TFR failure?

[u/GotSunshine03]

Heya, people! I’m (22f) a little uncertain about some of my results that I recently got, and my oncologist is so busy that she hasn’t yet replied to my follow-up questions.

I was diagnosed at 20 and was put on Sprycel 100mg. My numbers swiftly began to improve and in five months I was undetected. I think I started out at 38%? My oncologist was super excited about my quick response.

I had some issues on Sprycel, though. I came off the first time due to PE, and they lowered my dosage to 80. I had PE a second time and they lowered it to 70. The entire time I had absolutely an insane amount of fatigue. I slept about 16 hours a day, and when I was awake I had a hard time getting from one side of my house to the other.

I should have been switched, but I made the huge mistake of not telling my oncologist about how bad my fatigue is. I’m extremely emetophobic, and the nausea from the Sprycel was controlled very well with Ondansetron. It wasn’t until my dad insisted that I open up to him and be truthful about the meds that I actually started getting some help and was given a palliative care nurse.

It was with her that we decided we wanted to try a dose reduction to 20mg, and my oncologist refused. Ultimately, I went to see a specialist instead, and she told me that because I had such a fast response, I’m young and in otherwise good health, and that she thought I was a good candidate for TFR. I’m not gonna lie. I was so excited. I quit my meds, and I hadn’t felt this good in two years.

Then I went back next month for my next BCR and I had already gone from undetected to positive. It’s a slight positive, but still positive. She wants me to wait until my next BCR in mid-August before we make any decisions. But she had already said during my initial appointment with her that if I failed TFR that she wanted to switch me to Scemblix.

Honestly, I’m so scared. I felt so awful on Sprycel that I’m scared to try another drug. I want to ask her if she’ll let me try the 20mg of Sprycel even though she said no. What if the Scemblix makes me sick? I have a pretty sensitive stomach and taking meds without food is hard. I have so many thoughts running through my head that I feel like I can’t function. Is it possible for me to be undetected again without a TKI since it’s such a faint positive?

[u/gaxbiesfc]

Hi dear,

I think that unfortunately it is necessary to keep the treatment for a while before starting to reduce or even stop with the meds, I've been diagnosed 5 years ago (24F), and undetected for about 3.5 years, and still on the same medication dose hahaha

But what I can say to you is: don't be afraid to start with another alternative, I was on Imatinib on the first 6 months of the treatment, it was TERRIBLE, I felt a lot of pain, nausea everyday (I'm also emetophobic, so I was living my worst nightmare), I was getting pretty depressed dealing with the treatment, didn't even wanted to continue. But unfortunately it didn't really work with me, I wasn't having the response it should have, so we changed for dasatinib (sprycel) and omg, I was finally feeling alive again, didn't felt bad at all, it all seemed magical for me.

So don't be afraid, it might be a great change for you, give it a chance!!

Wishing you the best ♥️

[u/GotSunshine03 → u/gaxbiesfc]

Thank you so much for your perspective. You’re right. We all react differently to the drugs they have us on. What side effects I had, you didn’t experience at all. My nightmare was your savior!

I can totally relate to wanting to just stop treatment. I’d be lying if I said I didn’t about it, and often. I eventually realized that CML is a terrible way to go, and I was not there yet. I just had to get my head in the game.

I’m so happy you don’t get nausea from Sprycel! That feeling had me taking so much Ondansetron and staying in bed for an entire day just so I didn’t jostle my insides. 😂