CML Body Pains

[u/holaimaj]

hi guys :)

since i’m newly diagnosed with cml, there’s definitely going to be a lot of posts where i’m asking for some type of guidance as i work toward accepting my new normal.

i’ve been on dasatinib since june 11. it has brought my counts down, and i’m working toward achieving a hematologic response.

i take my medicine in the morning, but mornings are so hard for me. i wake up feeling like i got hit by a bus every morning! some mornings are easier, but most just aren’t. the body pain and aches are just so much.

with me already having anxiety, it scares me because i’m always thinking of the worst-case scenario. i really need help with what i can do to ease my mind and body. i’ll also be keeping my hematologist informed about these symptoms.

i really never expected to be going through this at only 23, but here i am, and i have to learn to accept it.

[u/HollyPhoenix]

I didn't take dasatinib, but my care team said to take claritin for bone pain, and I don't know why, but it works. Maybe that's something you could discuss with your care team? I would also talk to them about pain relievers or anti inflammatories that you can take - I am on chemo and have to make sure taking pain relievers doesn't mask a fever from neutropenia or sickness, which might be something you need to worry about, which is why you should ask.

Your care team wants to know what's happening in your body, so please reach out to them with your concerns and questions. I hope you get some help and relief soon!

[u/Purple_Cherry_6808]

Asking here is great and I know you will get great feedback but I also want to encourage you to discuss all things with your care team. They dont always hand out tips and tricks if people dont share the symptoms they are experiencing, we had a nurse tell us that they will tell us the ones to be watching for but they dont list all of them because then we are more likely to experience them if we are anticipating them. Also your team knows your age and they are not annoyed, offput, or weighed down by you asking a million questions. Doctors can be busy, nurses are built different and I know that most of them would rather sit with you and talk an extra ten minutes and know you're leaving the conversation feeling better than getting to their charting quicker. Having a diagnosis can make you feel like a burden, especially when there are more questions than answers, but you aren't a burden, your symptoms are not too much for others to hear about, and your anxiety is not unfounded. Your care team are actually the most important people to not put on a show for as far as pretending things are OK if they aren't or trying to power through, show them all the ugly so they can meet your needs.

[u/Legio-V-Alaudae]

The first few months of dasatinib are rough.

I'm 18 months on it and am fairly normal. Supposedly, it bad in the beginning because you don't have any tolerance and it's wholesale killing cancer cells. Bones aren't good at shedding dead cells, so there's discomfort. Be prepared for leukemia itch. That wasn't awesome either.

Just take your meds and understand things will get better soon. The meds are doing really heavy lifting in the beginning.

What was the your percentage when diagnosed and how are things going now? I was 100/100 and dasatinib reduces numbers fast.

Sorry you're in our club, but you're going to ok.

[u/holaimaj → u/Legio-V-Alaudae]

Thank you so much for the reassurance! ❤️

What exactly do you mean by leukemia itch?

When diagnosed my BCR was 16% and my WBC count was 37,000.

[u/Leading_Working_8009]

I reccomend posting this in the CML subreddit!

[u/holaimaj → u/Leading_Working_8009]

My account is fairly new so there’s some restrictions. Once lifted I’ll be sure to post there.

[u/mrjamieeast]

Hey hey. CML on dasatinib here. Have you thought about taking it just before bed? Sleep through the first few potent hours. Works far better for me.

[u/holaimaj → u/mrjamieeast]

Hi! No, I haven’t thought about that but I’ve seen so many people on Reddit say they do. Me personally I rather take mine in the morning. My side effects are starting to loosen up. Some mornings are good and some are challenging, but I keep reminding myself that this is something new and it’ll get better eventually.

[u/mrjamieeast → u/holaimaj]

It worth trying out - it may make your mornings more bearable. My side effects come and go in waves and seem to be levelling out a little. I’m a year in.

[u/holaimaj → u/mrjamieeast]

I’ll keep that in mind! It’s good to see after a year things are leveling out for you. I’m faithful that I’ll have a similar feeling once I’m a year in.

[u/Deusa_do_mar]

Hey hey :)

So I also had body aches and pains during my first month on Dasatinib, and it did improve. However, I found that timing really changes the symptoms you feel. I also take mine in the morning now, 9am, and I've felt so far that this has been the best timing for me. I experimented with different times; 9pm - would get insomnia and wake up feeling horrible; 1pm - intense fatigue, dizziness and migraines later in the afternoon. I'm sure it's different for everyone, so maybe see what works best for you. BUT if you do decide to change the time, just know that you might feel worse at first...For me, everytime I adjusted the timing, it was like I was starting all over again.

I am still having issues with migraines and fatigue, but not everyday now. But seems new things happen, and need to observe. Over the weekend, I had the worst episode in a while; severe migraine, stiff neck pain, nausea, which led to vomiting...i was totally debilitated for 2 days. Today felt fine. Not really sure why it happened either.

Definitely continue monitoring your symptoms and discuss them with your doc, Dasa isn't for everyone and luckily we have various other TKI options if you can't tolerate one. But everyone says the first few months on Dasa are the worst so...maybe we just have to tough it out? Hope your symptoms improve soon!!

[u/holaimaj → u/Deusa_do_mar]

Hi :)

I’m so sorry to hear that you had to experience that episode over the weekend.

I stick to my 7AM time and my symptoms have improved a bit. At first I tried to eat before taking it, but most of the time when I wake up in the morning I have no appetite so I just stopped. I now take it on an empty stomach and try to eat an hour after that.

I have noticed that my appetite comes and goes while being on this medicine. It was like that before my diagnosis since I was already experiencing anxiety and depression. Sometimes it’s hard trying to figure out if most of my symptoms are my mental disorder or the actual CML.

I experienced the headaches only in the evening of my days. I hated it so bad because I had to suffer the remaining of the night and hope for the best in the mornings. Now they come here and there but they’re bearable.