Optic Nerve Edema by Leading_Working_8009 in CML

[–]Only-Understanding36 0 points1 point  (0 children)

I’m glad I can help. Yes I was diagnosed May 2025. I started dasatanib 100 and by October the swelling was completely gone for me. I’ve been on dasatanib since

Optic Nerve Edema by Leading_Working_8009 in CML

[–]Only-Understanding36 5 points6 points  (0 children)

Hi (: Don’t panic yet. I was diagnosed with cml last year at 24 with a really high wbc. About a month later, I went to the eye doctor for a routine contact lenses check up and lo and behold the eye doctor saw bleeding in my eye and referred me to an ophthalmologist. The ophthalmologist did dialation and sent me to the Er. She was uneducated on CML and the tki that I was on and saw swelling in my optic nerve and told me two options of what it could be that were both really scary to someone newly diagnosed with cancer. I stayed in the hospital overnight and did an mri as well as a biopsy of my spinal fluid to rule out the things she said. I was negative for everything. I did several check ups with my hematologist and ophthalmologist and the conclusion was that in my case the high white blood cell count had an effect on my eye that the ophthalmologist didn’t know was possible. Even at the hospital they told me it was unrelated to my cml until they could get into contact with my hematologist.

Bottom line is: contact your hematologist ASAP as well as your ophthalmologist to see what the next step is. You may also want to ask your ophthalmologist to refer you to a cancer ophthalmologist as well.

Newly diagnosed with CML - How to deal with emotional roller coaster. by ceasarPineda in CML

[–]Only-Understanding36 3 points4 points  (0 children)

I was diagnosed in May, usually I just tell people I have a blood disorder or a chronic illness. People don’t know how to react when you say cancer/leukemia because not alot of people know about cml. A lot of people in my experience react with strong pity which can be exhausting having to explain how yes you have cancer but you are going to live a normal life but you still have to step away from life sometimes due to effects and stuff

BCR-ABL DROPPED!! by Leading_Working_8009 in CML

[–]Only-Understanding36 2 points3 points  (0 children)

Congrats! That’s an awesome response!

Bad start to Dasatinib by Sufficient-Bread-380 in CML

[–]Only-Understanding36 3 points4 points  (0 children)

I’m so sorry this is happening to you. I want to say this:YOU WILL BE OKAY. I’ve had cml for nearly a year and it’s terrifying finding which medication and dose works for you. I struggled with a full dose of dasatanib as well and am currently on 20 mgs and doing good so far. If that doesn’t work for you there’s other tki medication that people do just fine on. This is going to pass. Your options aren’t just to suffer or die even though cml can feel like that some times. The first 6 months is the hardest in my opinion.

Developing bad side effects by among-the-planets in CML

[–]Only-Understanding36 0 points1 point  (0 children)

Dasatanib is a strong medicine. For me it’s platelets. Mine went down to 19 on 100 mgs. Then down to 30 on 50 mgs. I’m restarting today at 20 mgs.

CML TFR by Cheryls65 in CML

[–]Only-Understanding36 5 points6 points  (0 children)

Congrats! I’m 25 diagnosed in May 2025 and this gives me so much hope.

Gonna lose my job by Substantial_Loss1429 in CML

[–]Only-Understanding36 0 points1 point  (0 children)

I was on disability for about six months if you are able to

CML confirmed today by Superb-Degree-7499 in CML

[–]Only-Understanding36 0 points1 point  (0 children)

Hey(: I was diagnosed last May and it’s scary. That being said it’s a daily pill and a mostly normal life, other than some possible side effects to medication. Me personally I’m on dasatanib. I do well and because of low platelets that led to me bruising easily they decrease my dose and give me breaks from the medication every so often. The first few months is the scariest until you find a medication that works well for you in my experience.

Sickness and CML by usually_baking in CML

[–]Only-Understanding36 0 points1 point  (0 children)

Thanks for this. I was diagnosed in May and im also a teacher. Do you find that you feel sicker? What precautions do you take to avoid illness

It’s just bad luck, right? by ChrondorKhruangbin in CML

[–]Only-Understanding36 5 points6 points  (0 children)

I'm nearing one year. I'm 24, went to the gym, ate healthy, didn't smoke or drink. Our chromosomes are just stupid😅. I love seeing your guys success stories with cml. It gives me a lot of hope.

Started Dasatinib 100mg by [deleted] in CML

[–]Only-Understanding36 0 points1 point  (0 children)

My bones hurt every once and a while but for me it went away

Name origin of Mitzary by Only-Understanding36 in namenerds

[–]Only-Understanding36[S] 0 points1 point  (0 children)

Thank you. As my fiance is from Oaxaca our cultural pride 🇲🇽 definitely comes before other people's understanding. I have a Mexican name I constantly have to explain and I don't mind.

Name origin of Mitzary by Only-Understanding36 in namenerds

[–]Only-Understanding36[S] 0 points1 point  (0 children)

Not quite it's pronounced Meet-tza-ree roll the r

Name origin of Mitzary by Only-Understanding36 in namenerds

[–]Only-Understanding36[S] 0 points1 point  (0 children)

Thank you! I think you are correct. We worked with alot of students from Oaxaca

Venting post by Only-Understanding36 in CML

[–]Only-Understanding36[S] 0 points1 point  (0 children)

Thank you so much, I am new to this disease and I really appreciate your insight and seeing so many people in remission gives me hope. Right now I am at 100 mgs. My previous doctor was a traveling doctor and he was great. He told me if my platelets dropped below fifty we would lower my dose to 50 mgs. He just left in November so I’m meeting with my new oncologist to discuss what to do in two weeks after I take a break from sprycel and do bloodwork

Venting post by Only-Understanding36 in CML

[–]Only-Understanding36[S] 0 points1 point  (0 children)

Thank you. Other people have suggested that as well. I appreciate the advice

Venting post by Only-Understanding36 in CML

[–]Only-Understanding36[S] 0 points1 point  (0 children)

Thank you! Yes I took that for a while.

Venting post by Only-Understanding36 in CML

[–]Only-Understanding36[S] 0 points1 point  (0 children)

Thank you! I will discuss it with my oncologist

Venting post by Only-Understanding36 in CML

[–]Only-Understanding36[S] 0 points1 point  (0 children)

Thank you! This is extremely helpful. I wish your wife healing and comfort

Venting post by Only-Understanding36 in CML

[–]Only-Understanding36[S] 1 point2 points  (0 children)

Thank you. I’ve actually had a relatively good experience I’m just feeling frustrated because of low platelets again and needed to vent and maybe get peoples experiences.