Does anyone have chronic myeloid leukemia (CML)?
Hi I am Rameez, 28 years old. I was diagnosed with chronic myeloid leukemia about 14 months ago. I take dasatinib tablets for the treatment. Almost an year went alright, lately I am feeling continues problems physically and emotionally. I am planning to take another opinion again. I would like to hear from someone who has the same condition and to know what medications or treatment they have done!?
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Hi Suzie, it's great to know how well your doing. I'm so happy for you. I appreciate the information you shared, especially about the biopsy. Would you happen to know if they would allow my husband in the room? I would just feel so much better if he was there. Yeah it sucks for all this to be happening and right around the holidays. Well I will keep you in my prayers and have a blessed Thanksgiving because we have a lot to be thankful for.
Hi, I'm so sorry that you had to experience that. They already told me I have the Philadelphia chromosome. I also have some been told recently that they have found some blast which puts me in the intermediate phase to Acute Leukemia so they have given me the Sprycel. My thought was, so why do I have to get this bone biopsy sill if you already know the treatment? But I get it, at lease I think I do. this is all so new and unexpected. Thank for sharing your I appreciate you and everyone who has shared. Have a blessed Thanksgiving, we do have a lot to be thankful for.
Hi, wow that's what I was called and told that they have found some blast which means it could be going into the acute stage. So they have started me on spycel. Thanks for the link I'm gonna read up on it. I have 7 children and my one grandson. my oldest is 33 and my youngest is 18. I appreciate you sharing your story it means a lot to hear form others who share the same situation. Have a wonderful Thanksgiving, we all have so much to be thankful for!
Hi: They probably will not allow your husband in with you if it is in Same Day Surgery at a hospital, but you have nothing to worry about. Your so sedated that you do not even know who is in the room. Its done so quick, and then your awake and ready to go home. You will feel very sore, but it gets better. I live in New Jersey, and I have no idea how they do things where you are. Just trust God, and have a great Thanksgiving. We always have something to be thankful for. Post so everyone knows how you did with the biopsy. All our information helps others.
Thank you and you are appreciated!!
Actually I’ve had 3 over the past several years. Really not as bad as you anticipate. Just remember to relax.
I had one just recently. Was pretty nervous. I was awake for it and even though it hurt it was more pressure than sharp pain. Wasn’t as bad as I thought it would be. The best thing is to relax like someone said. It goes much easier.
Hope that helps!
I had one about three years ago and had no problem. It was uncomfortable and had some pain in the area for a few days after but during the procedure there was no pain. I chatted with the doctor and staff that was in the room to break the silence and take my mind off of what was happening.
i was diagnosed with CML in 8/23 at 80 years old when i was at dr for a pre-op for my back surgery. They said my blood was not right sent me to an oncologist and diagnosed with CML. I was given Glevec which caused water retention which was out of control i am now on Sprlcel and am tolerating well
I was so shocked with my diagnosis and am still bewildered as to why it happened since i’ve been pretty healthy all my life
Good luck and be grateful they are giving you sedation for the biopsy mine was done without sedation and it was pretty painful i’ll pray for you
Hi, my name is Tina and I am newly diagnosed with CML, November 2023. This is all so new and kind of frightening. I'm glad to have found this group. It's good to hear how so many of you are successfully dealing with this disease. I currently have been taking 500 mg of hydroxyurea twice a day 7 days a week. Yes, I am often tired, and worried, and unsure what will happen. I am 76 years old, live with my husband of 50 years, and have no other family nearby. Our only son lives six hours away in California. We do, however, have some good friends here in the same town who are very supportive. I go for a bone marrow biopsy and bone exam this coming week. Though I am unsure about the procedure itself (no sedation at this clinic), I know I'll get through it, and I welcome any additional information the biopsy will reveal about my particular cancer. My next appointment with my oncologist is next Friday. I'll be joining a clinical trial and will be put on a TKI, as I understand. Thank you all for being here. It's a comfort.