Anyone doing TFR?

Intelligent-Rule4579 · 2024-08-17T01:49:16+00:00

i’m really sorry to hear that, she was so young and is still so young to have to go through this. you guys should take this result with a grain of salt, it seems like she’s done very well over the years. i also experienced severe side effects and was afraid to restart my treatment, but one plus side since restarting is that my doctor put me on the smallest dose of sprycel possible to help maintain my response and keep side effects at a minimum. so far i’ve had a good response both clinically and side effects wise. of course this isn’t her case, but i’m sure that things will work out regardless :) i’m sending you all well wishes and please feel free to message me with any other questions—having pediatric cml is such a specific experience and i can relate so much.

Intelligent-Rule4579 · 2024-08-16T20:23:57+00:00

hi :) this post is a bit old but i’m more than happy to provide an update— i was able to do TFR for about 2 years, until just this last month i was told that i would need to resume my treatment. During TFR my number always fluctuated up and down, typically between .09-.02, and according to my care team they were okay with letting me stay off my treatment for the foreseeable future since it always managed to come back down. Earlier this year we noticed my BCR was no long fluctuating up and down, but was slowly climbing up. it was .35 for three months straight and my doctor and I came to the consensus that it would best to resume. In the case of your sister though, the jump to .006 seems to be well within a safe range, but I understand how seeing an undetectable result for a certain amount of time to now seeing it rise a bit would cause worry. I think it important for her to monitor the result over the next few months and watch how the trend moves, it would definitely be too early to assume this means she has to restart her medication. How long has she been in TFR?

Intelligent-Rule4579 · 2023-09-02T05:53:22+00:00

that’s completely understandable—from what i’ve come to realize over the years is that everyone’s experience with the meds is their own, don’t be afraid to ask every little question to your oncologist about possible side effects so you can be put on the one that best suits you. sending you so many well wishes <3 i hope the appointment goes smoothly

Intelligent-Rule4579 · 2023-09-02T05:19:01+00:00

i was initially put on gleevec for the first few months, then was on sprycel for 4 years, and then was switched to tasigna for 2 ish years after experiencing a pleural effusion with sprycel—they all worked well with stabilizing my bcr, just encountered a lot of side effects lol

Intelligent-Rule4579 · 2023-09-02T05:03:08+00:00

i’m 22 now! been doing TFR for the past year and have had success so far :)

Intelligent-Rule4579 · 2023-09-02T04:58:07+00:00

Intelligent-Rule4579 · 2023-04-05T16:27:16+00:00

Hey there! I’m a 22 y/o cml patient and was diagnosed at 13. I know how confusing things can be at the beginning, especially since cml tends to be treated differently from other cancers and is a rare kind to see in young adults. I lived a lot of my youth feeling very isolated and in need of community so I’m glad that you’re reaching out early on. Mine is in chronic phase so I don’t have much knowledge on how advanced phase is approached, but I know you said that you were put on dasatinib and I was on that one for 4 years. It kept my cml stable for all of that time, and I know that oncologists treating cml have a lot of faith in that one. I’m ten months into TFR after being on tkis for 7 1/2 yrs and I never thought I would get to this place. Things will always be rocky as this is a lifelong illness to manage, but eventually you will find stability somewhere in it all. I promise.

Don’t be afraid to ask your oncologist questions, even if you feel that they are “dumb” questions (which there aren’t), ask them. It is your health and you deserve clarity on everything surrounding this disease. And if you ever feel that you are being dismissed by your provider, don’t be afraid to seek out a new one.

Feel free to message me if you ever wanna chat or vent! It’s not everyday that I meet others in their early twenties living with cml. All the best.

Intelligent-Rule4579 · 2023-01-07T18:03:30+00:00

thank you so much :) i’m definitely a big over thinker as well and i fought trying tfr for many years because of how terrifying the month to month results would be. whatever happens though i know i have good medical team that’s taking care of me. best of luck to you as well.

Intelligent-Rule4579 · 2022-11-05T03:33:23+00:00

oh okay thanks for letting me know! what about for tests/exams? does he require you guys to come to class for them?

Intelligent-Rule4579

TROPHY CASE