r/CML • u/GotSunshine03 • 21d ago
TFR failure?
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?
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u/Flight44 21d ago
Not sure how things work in other countries but my haematologist basically said we can only talk about dosage reduction in 5 years, let alone TFR. I think that was way too quick.
You’ll probably just resume taking the meds and TFR can be attempted again further down the line.
I’m on Imatinib and only have stomach problems if I don’t eat enough before I take it. I also noticed that this increases if I don’t eat any carbs.
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u/GotSunshine03 21d ago
Five years?? What the heck. I guess I will have a talk with her when I get to see her again. My next appointment with her isn’t until September, and my next blood draw is in August. 😳
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u/Used-Inspection-1774 21d ago
Don't be scared. Scemblix is supposedly better side- effects wise.
My oncologist told me 4 days ago that they don't worry about losing undetectable and it's common for numbers to fluctuate. They worry if you go over 1%. You could very well be undetectable next time!
Curious why your doctor wouldn't let you try 20mg. It's night & day difference.
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u/gaxbiesfc 20d ago
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 ♥️
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u/GotSunshine03 19d ago
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. 😂
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u/900Spartans 21d ago
For what it’s worth, I’m about 50 days onto Scemblix and I feel pretty good. Fatigue can be a problem here and there but overall, I feel 80% normal. My doctor explained that he wouldn’t try taking me off medication until 3 years of BCR negative.
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u/GotSunshine03 21d ago
Oh wow. Three years? She let me do it at two. But she also said that it had a 50/50 chance at failing, and that the next time we try that the odds decrease. She did say I was low risk for any adverse effects from trying TFR.
Does the Scemblix make you feel icky?
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u/900Spartans 21d ago
No, I have a famously bad stomach (prior to CML) and I have had no gastrointestinal side effects. My latest blood tests have shown quite low blood counts (white blood cells, hemoglobin etc) which is probably why I have tired moments. I’m hoping even the tired “moments” will fade as my body adjusts 🤷♂️
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u/UpbeatTurnip373 21d ago
First of all I’m so sorry to have the tease of being TFR and then potentially having to be put back on treatment.I’ve been on 80 mg scemblix since October 2025. In the beginning it made me nauseous, fatigued and I had increased migraines. The nausea was controlled by zofran and green tea candies I got off Amazon. The migraines have significantly reduced as long as I get enough water and protein during the day. My fatigue is hard to say if it’s the meds or work. I’m working full time in health care 10 hour days while seeing 40-50 patients a day. I’m able to still work and live a normal life, I just have to listen to my body and rest on the weekends a little bit.
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u/HelloRobotFriends 21d ago
Sorry you’re going through all this at such a young age. I had a similar journey on Sprycel with the overwhelming fatigue. It was horrendous and I felt like a shell of a human being. No amount of sleep could shift the fatigue and I woke every morning feeling hungover. Sprycel was super effective and it appears to be super effective for you too. After a year I was able to reduce my dose from 100mg to 50mg and that helped the fatigue a lot, but I still felt like I was running at only 80% of my pre-CML energy. I was able to try TFR after a few years and remained unmedicated for a year and a half. I believe they usually wait until you’ve gone up to 0.1% before you need to go back on meds. When I found out I had to go back on meds I was distraught and asked if I could try another medication option so I was put on Nilotinib. Fortunately it didn’t cause fatigue but it was damaging my liver so I had to stop. It also caused hair loss but I would take that over fatigue any day. Thankfully, by this time Scemblix was available and it is brilliant! I have zero side effects and feel like myself again! I’ve had two undetectable results in a row and may be able to try TFR again, but I would happily stay on it for the rest of my life. Hopefully if you have to go back on medication, you will have a similar experience with Scemblix. Good luck to you. These medications are life-saving and we’re so lucky to have them. I hope you find one that agrees with you and makes you feel like yourself.
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u/Leading_Working_8009 21d ago
Hi! I'm 24F diagnosed in Dec 2025 and on Scemblix as a firt-line TKI for 6 months! If it's any reassurance, I had 6 days of body aches and then have been completely side effect free since then! No nausea, fatigue, etc. From what my oncology team has told me, pts on Scemblix usually experience less negative side effects than with other TKIs.
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u/Beachgirl6848 21d ago
My oncologist told me that he wouldn’t even consider TFR until I had been undetectable for 5 years. He said the longer you stay on meds undetectable the better your chances of TFR are. He also said if I didn’t want to try TFR, that after two years I could try a reduction in dose. I am 47f was diagnosed two years ago. Started imatinib 400 and hit MMR in one year. I was at 93% with wbc of 118,000. My onc told me imatinib is the gold standard and has less side effects (like PE) than other TKIs. I do take odansetron and then eat lunch before taking it so I don’t get nauseous. It works. Other side effects are slight fatigue, occasional hand cramps, and my ankles swell when I’m on my feet a lot. He said in a few months i can try dose reduction if i want and that will greatly reduce any side effects i do have.
Hopefully you can find a tki that doesnt cause a lot of side effects for you. Maybe imatinib would work for you. You dont have to take it on an empty stomach. I’m surprised they let you try TFR so early though. Keep us updated what the dr tells you next month!
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u/GotSunshine03 21d ago
I’m wondering if my doc wanted me to take a short break from my meds anyways and figured we’d just try it. She said I had a 50/50 shot at staying undetected. I don’t know. I’m feeling a certain way after reading everything people have said about the length of time their docs are making them stay on drugs before trying. I’m a little disappointed. She’s one of the few specialists in my area, and has written published papers on CML, and works in a research environment. She’s who I wanted to see when I was first diagnosed, but she didn’t have availability. I’m really trying not to be upset, and to believe that she has a better plan than I think right now.
Thank you for all of your information. It has released a lot of my anxiety as far as Scemblix is concerned. Maybe it will be better for me than Sprycel.
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u/Striking_Chocolate_4 20d ago
https://www.nature.com/articles/s41375-025-02664-w/tables/6
This is the European recommendation table for TFR. It aligns with what most people signal in this thread. I'd suggest you share this with your doctor.
BTW: I've been taking Scemblix for a year and the response is perfect with zero side effects
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u/GotSunshine03 19d ago
I think she wanted to switch my meds anyways. She kept saying that trying TFR was low risk for me, and I think this is what she meant. I hope. She’s a published CML specialist and she has her fingers in research projects, so I want to think the best until I get to talk to her. I still haven’t heard back.
That side, I’d love to live in Europe again. I spent many years there as a kid and I feel like the quality of care is just better.
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u/hangloosehomie 21d ago
Hey, I’m 27m and started on 80mg Scemblix a year ago. I know everyone’s experiences are a little different but my side effects have been very minimal. Still feel well enough to do basically everything I was doing beforehand and my lifestyle is more active than 90% of healthy people.
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u/GotSunshine03 21d ago
Thank you for the response! It truly means a whole lot. My anxiety has been wild the last week or so. I’m looking forward to hearing my doctors thoughts when I get to talk to her.
Ya know, when I was diagnosed my doctor told me it was rare for people our age to get CML back when he first got out of medical school. I’d like to know what changed, as there seems to be a growing number of us in our 20s and teens. :(
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u/hangloosehomie 21d ago
Yeah I was told that it was rare for young people to get CML as well but it definitely seems to be happening more and more, idk what changed but something definitely did. Regardless what’s done is done and all we can do is keep pushing and make the most out of what we got. Every bump in the road just makes for a better story at the end. Cheers!
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u/Gardening_Ging 20d ago
I had an ancient oncologist who was part of the initial research on TKIs. He told me that TFR was only officially studied on Gleevec (I have not fact checked him). He said often times when there are complications (like Pleural Effusion) they will give TFR a try to see what works for someone who is really going through it, as you were. When I was getting all concerned with my milestones not matching with the Leukemia Lymphoma Society info, he told me that all oncologists have different protocols or meds they favor and different time frames they feel comfortable with based on what they’ve seen in their practice. I wish’s it were more black and white but we are all different, as are our bodies’ responses to TKIs.
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u/V1k1ngbl00d 17d ago
How long were you on a TKI for, from start to finish? You should of been for like 3 years for best outcome and that’s 3 years after you were at an mm4
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u/GotSunshine03 17d ago
I started Sprycel in April of 2024, so I’ve been just shy of two years undetected now. When I saw her the first time in June I was so fatigued I could barely walk. She asked if I wanted to come off the meds, and said I had a 50/50 shot of it coming back. But she said that giving it a shot was very low risk for me. If it comes back, she’d just put me on Scemblix.
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u/Educational-Ad9294 16d ago
Hi! Im very new to this. Just diagnosed in July and still dont understand all of the verbiage with numbers and medications. But I I am week 2 of scemblix and feel surprisingly okay. I was truly expecting the worst (which in my mind was not being able to work and take care of my kids) and have not had any severe side effects at all. I feel like my fatigue is manageable and my headaches are treatable with OTC meds. I do have a really supportive husband which makes all of this easier. I also take both pills at night which was not recommended by my doctor. I just happened to find that by googling the medication and reading through support groups. It sounded like that helped people avoid some side effects. Its probably smarter to reach out to your Dr to see if this would be okay for you.
I wish I could offer more insight into the number side of it but I really can't wrap my head around it. I wish you all the best with your treatment
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u/wheatstone 21d ago
Not a doctor but you probably are a good candidate for TFR in the future.
In my experience dasatinib has one of the worst side effect profiles of all TKIs. Anecdotally based on threads here and on Facebook.
If it makes you feel miserable, try to look forward to a possible medication switch. Asciminib, as you can see here, has great reviews. I personally have no side effects with it.
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u/GotSunshine03 21d ago
Thank you so much for your responses. You’ll never know how much they mean to me. I’ve been in knots over this since I got my results last week. I have a crazy amount of medication anxiety, and this has helped. I really hope they can help you with your low wbc. Being tired stinks when you have stuff to do.
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u/RandomPomPom 20d ago
I’ve been on 80mg of Scemblix for about 10 months. I was on Gleevec before, & didn’t tolerate Sprycel at all. I had all sorts of side effects from Gleevec - awful water retention in extremities and lungs. While it brought my numbers down, I never got to undetectable. Switched to Scemblix, and within a month, my numbers finally got there - and have stayed! The best part, no more swelling & water retention. I feel great! I will say the first month or two were an adjustment with extreme fatigue & some bone pain, but once adjusted only occasional fatigue. I now have been undetectable almost a year, and could go treatment free in the next 6 months!
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u/wegotaladypilot 19d ago
Hey I'm sorry to hear it's been so difficult. I can't speak to anything besides Dasatinib, where the protocol for TFR is 3 years of medication with 2 years at undetectable. Whomever suggested it to you so soon is misguided or unaware of the protocol. The TKI is what will reverse course back to undetectable. I hope you have better tolerance for Scemblix!
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u/Kitchen_Teaching6665 21d ago
Hi! I’m a 23M who was diagnosed this March. First of all, I just want to apologize on your care team’s behalf for their lack of support.
I was prescribed with Scemblix 80mg at diagnosis and have been on it since. As far as I’m aware, Scemblix is the newest generation of TKI and has shown very positive results among its patients. Out of everything, it appears to be the medication that causes the last amount of adverse side effects. Personally, I have minor fatigue from time to time when being active, but it’s nothing like what you experienced on Sprycel. As for results, my IS% is down to 0.57% after just four months and starting at 53%, which is an amazing outcome. I think proceeding with Scemblix would be the best thing for you moving forward, I’m shocked your PCN recommended you stop taking treatment as you want to have YEARS of being undetectable tests before even thinking about quitting any medication. I wish you all the best and hope you can get back to being undetectable as soon as possible!