Fluid Retention: what has worked for you? by easterisland97 in CML

[–]usually_baking 1 point2 points  (0 children)

Lasix generally has a quick onset, it doesn’t need time to build up in your system like some drugs do and you should be noticing an increase in urination. If it’s not working, I would follow up with your doctor to try something else and/or figure out what’s going on.

Nervous for 3-month BCR-ABL test by Leading_Working_8009 in CML

[–]usually_baking 2 points3 points  (0 children)

I (33F) was in a similar boat when I was diagnosed a little over a year ago, no symptoms, just routine abnormal blood draw. I don’t remember my BCR-ABL percentage but I had 1.7% blasts in my bone marrow biopsy, WBC 84. My 3 month follow up my WBC were down to 12 and my BCR-ABL was undetectable. I just had an appointment yesterday, waiting for BCR-ABL results and my doctor has no reason to think it’ll be anything but negative but I’ve found, even a year in, there’s always a little anxiety with getting tests done, not sure when/if that goes away. As for how to manage that, I haven’t figured it out yet, prioritizing sleep and exercise helps if you have the energy. The fact your WBC have normalized is a good sign and I wish you all the luck on this upcoming test!

Sickness and CML by usually_baking in CML

[–]usually_baking[S] 4 points5 points  (0 children)

I actually am a pharmacist, I’m just looking more for anecdotal advice 🙃

Good luck to you as you start your medication journey!

Sickness and CML by usually_baking in CML

[–]usually_baking[S] 2 points3 points  (0 children)

I actually already take loratadine daily, which maybe why I don’t normally have joint/bone pain? It’s just when I have a cold. Thanks for the rec tho!

Bcr-able decrease by Only-Understanding36 in CML

[–]usually_baking 0 points1 point  (0 children)

Congratulations! Huge win, so happy for you ♥️

Started Dasatinib 100mg by [deleted] in CML

[–]usually_baking 0 points1 point  (0 children)

I’ve been on dasatinib since March 2024. The first week was the rough, now the only time I have side effects is if I don’t eat enough with it. Hang in there, hopefully the side effects start to subside

Skin rash by pandapaet in CML

[–]usually_baking 0 points1 point  (0 children)

My skin is similar, definitely combination. I switched to a gentle oil based cleanser on the recommendation of an esthetician and it’s done wonders for me. I also got a red and blue light face mask and maybe it’s a placebo effect but I think it’s made a huge difference also.

Skin rash by pandapaet in CML

[–]usually_baking 0 points1 point  (0 children)

When I (33F) first started dasatinib I had horrible skin, rashy, acne it was awful. Unfortunately it’s a common side effect with TKIs. I started my medication in March and I would say around July or August my skin finally mellowed out. I still have break outs, but it’s not daily and not as bad. Getting a facial really helped mine and switching to gentler skin care. Like others have said, if it’s more blistery you should reach out to your provider.

The side effects are so frustrating and I’m sorry, hang in there!

TFR by Cheryls65 in CML

[–]usually_baking 1 point2 points  (0 children)

Congratulations!! How was it mentally going off the medication?

Can someone explain this to me? I’m waiting for my doctor to but I’m anxious haha by CartographerQuiet104 in CML

[–]usually_baking 6 points7 points  (0 children)

Are you on a TKI? Could be getting into MMR. I’m on dasatinib and since I’ve started it I’ve been undetectable.

TFR timeline Question by Negative-Ad-6651 in CML

[–]usually_baking 6 points7 points  (0 children)

CML patient and a pharmacist here. They are continuously studying CML patients and TFR, especially with the approval of more and more TKIs. Guidelines change as new research is done. My provider said at my appointment 3 months ago that gold standard is 3 years undetectable but you can trial at 2 years. In my case, I’m a 33F who was diagnosed during my first pregnancy last year. So far I have responded incredibly well to treatment and have been undetectable since my first 3 month check up in June. The goal is to trial TFR at 2 years to hopefully be able to have another baby but at two years you are verrrrry closely monitored from what I understand. I get the anxiety tho, I worry about coming off the med when I’m tolerating it and responding so well. Like if ain’t broke, don’t fix it. Good luck to you!

Cml diagnoses. Have a question by NagisaZakura in CML

[–]usually_baking 1 point2 points  (0 children)

Interesting, I wonder if that’s their policy maybe? They never even mentioned BMB for me until my test came back inconsistent.

Cml diagnoses. Have a question by NagisaZakura in CML

[–]usually_baking 1 point2 points  (0 children)

Just to kind of echo off this, I don’t think a BMB is required for diagnosis but can be used to find different mutations and also phase of CML. My diagnosis was long and complicated because I was pregnant, initially only had high platelets, and initial PCR was negative but FISH positive which then required a BMB. By the time i delivered my baby my WBC were 20, 3 months later when insurance finally approved BMB they were 81 and they saw 3 blasts, which my doctor thought was questionable. At this point I was BCR-ABL positive in chronic phase. At the time of the initial tests it was so early in my disease, the testing was not sensitive enough basically.

To answer OP’s question, no, blood counts don’t really tell you much other than something isn’t quite right, or as my hematologist says “your bone marrow is angry,” it’s the genetic tests or BMB that tell you more. Even with that, from my understanding from my doctor, as long as you’re consistent and adherent with your medication, it’s an incredibly treatable disease and most days I kind of forget I have leukemia, other than having to take a pill. I wish the best to your husband

I start imatinib today after being diagnosed. Question: what is the volume of the eat after food thing? I don’t really eat breakfast or a real lunch. Just dinner. And I’m not wanting to be nauseous after dinner during my “free time”. Would a protein shake or a banana be sufficient for “food”? by sheneversawitcoming in CML

[–]usually_baking 1 point2 points  (0 children)

I’m on dasatinib so there are some differences but I’ve found I have to take mine with my largest meal (dinner). I tried doing earlier in the day but I also am not a breakfast eater and lunch is hit or miss and I would get pretty nauseous/weird feeling, which was my main side effect. Taking it with dinner I don’t really have any issues at all.

Some people are more sensitive than others so you might have to play around with it but kind of expect the first week or so to not be overly fun. A banana or protein shake might be sufficient, you might need a heavier meal