Does anyone have chronic myeloid leukemia (CML)?

I've not had any severe side effects. My hair is thinner but nowhere near losing all of it. I get tired easier and catch pretty much every cold or flu that my grandkids have. I try to avoid when they're sick but I think I get infected before they even know they are. If you don't mind, I'd like to know your experience with Sprycel progresses

i will keep you informed i was on gleevac but the edema was so severe my dr put me on sprycel. I haven’t started it yet since i’m waiting for the swelling to diminish

Hello my name is Kim,
I have recently been diagnosed with CML on 11/14/2023. I went to the doctor for my routine physical/bloodwork at the end of October. I was told my WBC were elevated and I need to retest. The next call I received was different nurses and doctors from my primary care and Hematology. I’m currently taking Hydroxyurea, and waiting to receive Sprycel. I’m 52 never had any health problems my entire life. This is so shocking to me. I have to get a bone biopsy on Dec 1 and they’re doing it at the hospital under moderate sedation. I’m so terrified of the unknown. Could someone please tell me if this procedure is painful as it sounds. I appreciate this form I just found it. I will be praying for you all.

@kimmy5. Oh my gosh, Kim, so much has just been tossed at you out of the blue. It’s very normal to feel terrified of the unknown. You came to the perfect place to find information to help grasp what’s going on and what you might expect from your new diagnosis.

We have several members in our forum who have CML
(chronic myelogenous leukemia). You may already have read some of the replies by @suzie71 @pam62 @bobmon @pam62 @dmmurph in this discussion. I know that they’re very willing to speak with you about their experiences and give you some hope so that you’re not feeling alone.

I can shed some light on your bone marrow biopsy. It sounds worse than it is in reality, especially since you’ll be having it done with sedation. This makes it super easy and it’s over in 10 minutes from the time you drift off.
The biopsy is an important tool for your doctor. It takes samples from heart of your blood manufacturing site, the marrow. It will give your doctor vital information about your marrow’s ability to supply you with healthy blood products, define your diagnosis and help create an appropriate treatment plan.

The sedation is given through a little IV that’s in your hand or arm. Very small needle and you barely know it’s there.
The sedation is light but you won’t feel or remember a thing about the biopsy. You wake up quickly and are able to walk out of the out patient area within 20 minutes.

There’s no open wound. This is just a needle that is inserted into your hip bone, near the area where you feel the big dimples above your bum. The doctor or NP will take sample of the marrow and also of the peripheral blood that is in the marrow. You’ll have a compression bandaid over the site with a large wad of cotton under to keep pressure. You only need to keep that on 24 hours. After that the bandaid can be removed and you’re free to shower and resume all activities. You can choose to put ice there if you’d like. You’ll be given instructions before you leave and usually you’re offered some crackers or cookies and a beverage. There’s really nothing to fear.
It takes about a week for the doctor to receive all the elements of the report.
That will be a long week of waiting for the results. From experience, the best thing is keep distracted. What are some of your favorite activities?

Hi, thank you for such an informative reply, it’s appreciated. I am so overwhelmed and haven’t even told my children. My husband only knew because I kept getting phone calls and blood draws. But he’s very supportive. I really do physical feel alone. Mentally I’m just trying to hold it all together for my family. My favorite thing to do is spend time with my 5 year old grandson and read the Bible. I’m a firm believer in Jesus Christ and know that nothing happens without Him allowing it. I just still can’t believe it though. I’m still in shock I guess. Lately when I’m not at work or around my family I just cry. I will continue to lean on the Lord and not my own understanding about this diagnosis. My oldest daughter knows about this and she is also supportive. She lives in another state, but we talk everyday. Thanks you so much for listening. I pray you are doing well I’m this situation as well.

I’ve had the bone marrow biopsy without sedation. It was extremely painful and caused my muscles to constrict and after about two hours the lidacain wore off and my muscles seized causing more pain. Sedation is a must and i’ll never do it again without it
This procedure is necessary for your dr to properly diagnose you with CML and identify the Philadelphia chromosome BCR/ABL good luck in your journey

Hi Dana: Ask your doctor about the swelling. I had bad Orbital Edema through my whole time of taking Imatinib. My eyes always looked swollen, but I did not care because it was working to get me to a remission. I was never given anything for it, but later on I was experiencing fluid throughout my body and had to stop taking it. I stopped but it was 18 years of taking my pill everyday. Maybe you can take a water pill, but like I said check with your doctor. Hope this helps.

Hi Kim: I was diagnosed at 52 years old also, and I am now 76. I am off my treatment now for almost 6 years. CML is very treatable. When I used to have BMB, I was given Lidocaine injection, and then sedation My doctor used to put Demerol into my IV, and I had no pain at all. I could feel the pressure of him going into get the sample, but it was not painful. After the BMB you feel sore for awhile. Sometimes a few weeks. I shared my diagnosis with all my family, and got tremendous support from everybody. My husband was with me through everything. IT is so shocking. You just have to trust God. Nothing is impossible with God. He has gotten me through this and much more through the years. You will be fine. My first biopsy was also in Dec right before the holidays, and I did not know what to expect. It all worked out well. Enjoy your holidays and your family, as you enjoy a long life.

my dr has taken me off imitanib i just couldn’t stand it any more. I tried lasix but that only hurt my kidneys so she has ordered dasatanib to try 50 mg daily so we’ll see how that goes

Hi Kim, I am doing very well, thank you. That’s the reason I’m here to offer other people with leukemia the gift of hope. Almost 5 years ago I was diagnosed with CML’s ugly and aggressive stepsister, AML. Much like you, I was seldom ever ill, had a super healthy and physically active lifestyle.

Because it’s termed Acute, the AML came on like a speeding freight train. Months of chemo and a bone marrow transplant got me in a durable remission. Now I’m fit, healthy and feel as though nothing ever happened. Occasionally I have a ‘hiccup’ related to the transplant but the cancer is gone and life is pretty normal.

Sometimes life just throws us a curveball over which we have no control! In my case, I acquired 3 DNA mutations which caused certain cells to proliferate out of control. My doctors have said there is no way to know what caused it. There can be stray gamma rays shooting through the earth, or whatever…that can just cause a random mutation. Your doctor will be checking your biopsy for mutations as well.

You have been diagnosed with CML. It tends to develop slowly. After your biopsy results are back your doctor will be able to develop a comprehensive treatment option plan for you. I think you’ll feel better knowing there’s a plan of action. Right now you feel helpless and overwhelmed.

I’m giving you a link for an article that gives you some good information on CML without overloading you. Knowledge is power but when you’re first diagnosed it’s an overload to get too much information at one time. There’s only so much you an absorb when you’re feeling shocked by the news. Truly, I know how you feel. https://my.clevelandclinic.org/health/diseases/21845-chronic-myelogenous-leukemia-cml

I’m happy you’ve told your daughter and you’ll know when it’s right to tell your other children. The support of your husband and your deep and abiding faith will all serve to get you through this. As a mom, you know the super powers you already possess. Your brain will wrap around this and you’ll realize you’ve already had this for some time and not much as changed. Your grandson will have his granny around a long time. ☺️

How many children do you have?