I've had CML for 20 years and want to encourage others

Hi: CML is very treatable. I was diagnosed in 1998, and there were no TKI drugs to treat it. I was told 6 months to a year without a bone marrow transplant. I was 52, and I am now 76 going on 77. I have been undetectable after taking Gleevec (Imatinib) for 18 years. I did the clinical trial for the Gleevec back in 2000. Prior to getting into the trial, all they could offer me was some heavy duty treatment that did not work for me. I am in a deep remission, and been off all treatment for 6 years. I do have to be checked constantly to be sure I am holding the remission. I am sure that your brother is or will be put on a what we call a TKI drug. There are various drugs and they just have to find which one will work for him Please keep us updated as to his progress. Tell him to stay positive, because he can beat this.

Grandson should be here next 12 hours .. start target treatment this week. Insurance went threw ..

Good news all around with the insurance approval for your son’s treatment and the arrival of your new little grandson any moment now! I hope everything goes smoothly with a ‘speedy delivery’ ☺️. This little bundle will bring a level of much needed happiness to your family. 💕

Made me cry , cause we all need some sunshine back .. and the baby bringing some joy back to us all

Hi Cortney! I didn’t want to let another day go by without checking on you and your family…which hopefully has grown by one since we last chatted. How is life with a little grand baby? I can imagine the joy this little guy has brought to your family. How is your son doing with his 2nd round of medication?

I have just been diagnosed with CML. I am 76yrs old. They are going to put me on hydroxeria. I am afraid I won’t be able to tolerate it. Any suggestions.

Is hydroxeria hard to take. I am 76 yrs old and have been diagnosed with CML. I am
Afraid I won’t be able to tolerate the drugs they put me on.

Welcome to Connect @jacklyn. It looks like you were recently diagnosed with a slowly developing, chronic form of leukemia called CML. The good news is that this type of leukemia generally responds well to treatment so you can continue to enjoy life!

As for tolerating the hydroxy, I’d encourage you to try it. Because to do nothing would be to allow the disease to proliferate out of control. With CML, there are more targeted medications to take to treat the disease specifically. So your hematologist oncologist may be starting you out on Hydroxy to lower the white blood count and then make a switch. I found a good article for you from the Leukemia & Lymphoma Society that explains the medications for CML.
https://www.lls.org/leukemia/chronic-myeloid-leukemia/treatment/lowering-high-white-blood-cell-counts
There are many members in our forum who are also taking Hydroxy because it’s a pretty common drug used to treat different blood conditions. I’ll post the link below for you to check out. Hopefully the conversations with experienced members will help ease your fears about the drug.

The first discussion is about taking Hydroxy.
~What are most common side effects when starting HU (Hydroxyurea)?
https://connect.mayoclinic.org/discussion/hu-side-effects/
Were you having symptoms that led to your diagnosis? How was your CML diagnosed?

Thank you so much for all the information. I feel better already. I was diagnosed with low risk MDS 8 yrs ago. A wait and see. Low platelets were my problem. I was put in steroids for pneumonia and my platelets came back to normal. I had a total hip replacement last year which went very well but ended up with fractures in my thoracic spine which led to a diagnosis of osteopenia. Taking injections for that. I have had problems with shortness of breath and sweating at night for a few years. Then my white cell count suddenly rose to 43. My hematologist did 2 bone marrow biopsies because the first one the biopsy wasn’t enough
She thinks snd came back negative. The second one she eas pleased with and sent the biopsy to the Jewish General hospital and The Glen. Two top hospitals in Montreal. Two weeks later she called me with my diagnosis. It was over the phone and I took in what I could. She said the hematology board of doctors would be meeting Thursday to discuss my case. She wanted to start me on hydroxy but it is a long weekend here so I guess I will start Tuesday. She also
Talked about Chemo treatments but not like the chemo I took 17 yrs ago for Breast cancer. It is an injection under the skin for 7 days I think. I will know more this week. Also the fatigue I have off and on. It just comes on usually at the end of the day. I lay down for about 15 min and then I get up and I am ok again. Have to take breaks when doing housework. lol.

Hi @jacklyn, I had to chuckle a little with your comment about taking breaks from house work. I still do and I’ve been in a durable remission for 5 years and rarely tired. But my husband doesn’t need to know that! 😂 Shhhhh!
I had CML’s ugly step sister, AML which is an aggressive form of leukemia. With treatment that’s all behind me now but I still enjoy a ‘weak moment’ of needing to read or watch a movie for a while during the day. 😉

I know from experience that it’s scary starting new drugs. But they are a means to getting our lives back in order. Your doctor will talk to you about your medications and treatment plan. Don’t hesitate to ask the questions you need to help you feel comfortable and confident about the meds. My doctor and NPs were so helpful in alleviating concerns I had about the many drugs I had to take. All of my fears were unfounded because side effects were minimal and the benefits definitely outweighed any of the risks.

I’m so glad you joined Connect and that I could help calm your fears a bit. I truly understand what it feels like to get a diagnosis that comes out of the blue and I’m here for you anytime….as long as I’m not watching a movie! LOL.
You’ll learn much more with your next appointment. Will you check back in to let me know what you found out?