Does anyone have chronic myeloid leukemia (CML)?

Good morning, @ortina2023. I’m so glad you found our group too! It helps to know you’re not alone when you get a new diagnosis, especially when it contains works like leukemia. I’ve been there so I can relate to that wave of emotions.
A whole ‘new’ world just opened up in front of you with learning new terminology, new blood tests, diagnositcs and a new specialist. You’re going to get through this one day at a time. ☺️. I had CML’s ugly stepsister, AML (Acute myeloid leukemia), which is a more aggressive version of Chronic Myeloid leukemia making it a little more of a challenge in treatment. However, I’m here, almost 5 years, later to offer patients hope for a positive future.

Your next step is the bone marrow biopsy. Even without sedation there will be anesthetic injected in the site to minimize discomfort. It’s not so much a sharp pain but more of an intense tugging feeling in the little ridge of bone near one of the dimples above your bum. Remember Lamaze breathing? That helped me through the few minutes that it takes for the biopsy. Try to relax and picture things that bring you joy. ☺️

It sounds as though there has already been some analysis as to potential acquired genetic mutations. You’re going to be in a clinical trial for a Tyrosine Kinase Inhibitor which will target that mutation.

I’m sure you have a ton of questions so I’ve found a couple of information articles for you that I feel are quite helpful.
This from Healthline.com on CML
https://www.healthline.com/health/chronic-myelogenous-leukemia-cml
From the Leukemia & Lymphoma Society (LLS) https://www.lls.org/leukemia/chronic-myeloid-leukemia

The LLS has a great deal of information on their site. This article explains about your TKI therapy.
https://www.lls.org/leukemia/chronic-myeloid-leukemia/treatment/tyrosine-kinase-inhibitor-tki-therapy
Was this discovered with a routine physical or did you have symptoms that had you looking for answers?

It was a routine CBC prior to my regular 6 month checkup with my primary care doctor. Platelets were 800+ so he ordered a second test days later and they were over 900. Referral to hematologist, first diagnosis was thrombocythemia, more tests, platelets rose to over 2000, test for Philadelphia chromosome was positive, new diagnosis CML, and I was put on hydroxyurea. I’m very glad you’re doing well almost five years past your own diagnosis! And thanks for those links. Information is so helpful at this stage.

I’m a firm believer in ‘Knowledge is power” but there are so many unhelpful sites with Dr Google that it’s important to stick with credible, reliable sources. It also is helpful talking with others who have been on the same journey.

So please don’t hesitate to be a daily visitor here! Sharing our experiences and having a lifeline gives a certain comfort level when treading in unfamiliar territory.

Wishing you all the best with your upcoming tests and visit with the oncologist. Will you let me know what you find out, please?

Yes, I will.

im now on Sprycel since Glevec caused me severe edema.
However, i’m noticing I have difficuty breathing and after my chest x-ray a small plueral effusion which maybe causing my shortness of breath. My Dr has decreased my Sprycel from 50 mg/day to 40mg/day (20 mg in am and 20 mg in pm) has anyone else experienced this and if they were taken off Sprycel what medicine is next
thank you for any information

Hello, thanks for the message I appreciate it. I pray you had a wonderful Thanksgiving, I believe we all have a lot to be thankful for. I am shocked as well never had any health problem and then this out of the blue. I did get my biopsy done on Dec 1st and it was really scary for me. They were very nice at the hospital and I don't even remember the procedure once they gave me the medicine. I was able to hear them if they called my name though. I am sorry that you had to get that done without sedation. I'm better now, but still just a little clouded about the whole situation. I want to thank you for the prayers cause well all need prayer. Stay blessed and thanks for the message again.

Hello, wow 3 that's a lot but I know you have to do what's needed to take care of yourself. Thanks for the reply I appreciate it. I did get the biopsy don on Dec 1, it was not bad but scary. I really don't remember much after the medication though. Thank you and I will keep you in my prayers.

Hello
Been a long time since I have posted anything, diagnosed 11/2018. Spent Thanksgiving in the hospital that year. Since then I have been on Sprycel, started at 100mg and am now down to 50mg. I have been very diligently with my dosing schedule, I think I’ve only missed 6-7 doses since I started. Managing side effects has been a struggle at times, still better than the alternative. My labs have been much like a rollercoaster, which is normal as I’ve been told.
From everything I’ve read on Sprycel taking it on a schedule consistently and managing the side effects are important. I started with labs every week and now down to 3 times a year. Last two labs have been undetectable which is great.
This journey has been full of so many different emotions anxiety, stress, anger, acceptance. Do the best you can to take care of your self, follow your treatment program, and try not to get hung up on things you can’t control.
Best wishes to all on this same journey.
One last thing in case anyone wasn’t aware. Sprycel has a co-pay assistance program. For me it has covered all the co-pays after insurance.

Hello
Can i ask what are the side affects you’ve experienced while in Sprycel?
thank you
Dana

Initially had had quite a few, as my body adapted it got better and low dosage helped also.
Fatigue, weakness, joint pain mostly in my legs, muscle aches ,headache, body temp fluctuations, rashes, dry skin.
Currently fatigue and dry skin rashes seem to be what I notice the most.
Steve