1. < Blood Cancers & Disorders

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

Posted by suzie71 @suzie71, Feb 17, 2019

I have had CML for 20 years. Would love to encourage anyone struggling with it or new to it.

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Mentor
Lori, Volunteer Mentor | @loribmt | Nov 19, 2024
In reply to @dgordillo "He finally saw a pain management doctor. She sent him for blood work and told him..." + (show)
@dgordillo

He finally saw a pain management doctor. She sent him for blood work and told him he had to see the oncologist. He finally did that. The first blood work he has had done since he was in the hospital in December. His WBC was 78 and all of the wbc counts were out of range. The oncologist told him he was at high risk for a stroke and asked him if he wanted treatment or not. He said he wanted time to think. In the meantime he gave him HydroxyUrea to help get his WBC count down. He had labs repeated and he is still in the critical high level at 68.2. The lab was unable to perform a UA test because he had too much fat in the sample. The medicine has made him sick, bleeding gums, threw up blood, fatigue, back pain, headaches just to name a few symptoms. He said he would try the new medicine Scemblix and see what it does. He is only doing it because he is afraid of having a stroke. His blood sugar has been running high 300-400. He wont let me test him and said he isnt taking any meds to control it. Its an uphill battle!

Thank you for checking in with me. Its been helpful just knowing people care.

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Good morning, @dgordillo You’ve been on my mind quite a bit lately. I haven’t heard any updates about your husband’s condition and his refusing treatments for CML. Has there been any changes? I know you’re at odds with him over this and it’s been stressful for you. How are you holding up?

REPLY
ortina2023 | @ortina2023 | Dec 16, 2024

I’m now over one year since my confirmed diagnosis of CML in Nov. 2023. I’m responding well to Tasigna (nilotinib) and am in a clinical trial with a great doctor and medical team. I have low iron and potassium but otherwise pretty normal lab results now.
Lately I have been dealing with a lack of energy. It’s hard to make myself do much of anything. Is this normal? Should I be concerned? I see the hematologist/oncologist in a few weeks for new labs and a possible iron infusion if my lab results indicate the need. I am 77 years old, and had a bout of bronchitis a few months ago and am still coughing and have some persistent cold-like symptoms .
Just wondering if anyone else has experienced this in their CML journey.

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Mentor
Lori, Volunteer Mentor | @loribmt | Mar 20 8:59am
In reply to @dgordillo "He finally saw a pain management doctor. She sent him for blood work and told him..." + (show)
@dgordillo

He finally saw a pain management doctor. She sent him for blood work and told him he had to see the oncologist. He finally did that. The first blood work he has had done since he was in the hospital in December. His WBC was 78 and all of the wbc counts were out of range. The oncologist told him he was at high risk for a stroke and asked him if he wanted treatment or not. He said he wanted time to think. In the meantime he gave him HydroxyUrea to help get his WBC count down. He had labs repeated and he is still in the critical high level at 68.2. The lab was unable to perform a UA test because he had too much fat in the sample. The medicine has made him sick, bleeding gums, threw up blood, fatigue, back pain, headaches just to name a few symptoms. He said he would try the new medicine Scemblix and see what it does. He is only doing it because he is afraid of having a stroke. His blood sugar has been running high 300-400. He wont let me test him and said he isnt taking any meds to control it. Its an uphill battle!

Thank you for checking in with me. Its been helpful just knowing people care.

Jump to this post

Hi @dgordillo. It’s been a very long time since I’ve seen an update from you. I remember last summer was a very stressful time for you with trying get your husband on board for pain meds, monitoring his blood sugar and possibly encouraging him to take his other medications. I hope, for both your sakes, that he was able to balance things out for his health and your peace of mind. Have there been any positive changes in his health?

REPLY
1 reply
dgordillo | @dgordillo | Mar 20 1:42pm
In reply to @loribmt "Hi @dgordillo. It’s been a very long time since I’ve seen an update from you. I..." + (show)
@loribmt

Hi @dgordillo. It’s been a very long time since I’ve seen an update from you. I remember last summer was a very stressful time for you with trying get your husband on board for pain meds, monitoring his blood sugar and possibly encouraging him to take his other medications. I hope, for both your sakes, that he was able to balance things out for his health and your peace of mind. Have there been any positive changes in his health?

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Hi Lori,

My husband went on hospice in September. They have been very good to him. He doesnt listen to me but will do what they tell him. He is in a lot of pain daily but still suffers because her doesnt want to take pain meds all the time. He still hasnt accepted he has little time left. He wont do blood work so we dont know how much his cancer has progressed. He still thinks he is going to get better.

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1 reply
nasr | @nasr | Mar 21 8:20am

I have cml since 27 month l take gleevec 400 once daily
But i am suffer from my eyes are you stooping imatinib or stiil taking it

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Mar 21 10:23am
In reply to @nasr "I have cml since 27 month l take gleevec 400 once daily But i am suffer..." + (show)
@nasr

I have cml since 27 month l take gleevec 400 once daily
But i am suffer from my eyes are you stooping imatinib or stiil taking it

Jump to this post

Welcome to Connect, @nasr. I’m sorry to read that you’re having a difficult time with your eyes. What type of symptoms are you having?
Do you feel this is from the medication you’re taking for CML? What does your doctor say about the possibility?

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Mar 21 11:23am
In reply to @dgordillo "Hi Lori, My husband went on hospice in September. They have been very good to him...." + (show)
@dgordillo

Hi Lori,

My husband went on hospice in September. They have been very good to him. He doesnt listen to me but will do what they tell him. He is in a lot of pain daily but still suffers because her doesnt want to take pain meds all the time. He still hasnt accepted he has little time left. He wont do blood work so we dont know how much his cancer has progressed. He still thinks he is going to get better.

Jump to this post

I’m relieved for both of you that your husband is in hospice. This takes the onus off of you for trying to get him to comply with taking his medications, bp, glucose checks, etc.. I know you want only the best for him and golly, he is doing his best to remain stubborn. ☺️ I guess if he’s in denial about how much his cancer has progressed, it keeps him hopeful for positive outcome and that’s admirable. Sending a hug for both of you.

REPLY
nasr | @nasr | Mar 21 2:32pm
In reply to @loribmt "Welcome to Connect, @nasr. I’m sorry to read that you’re having a difficult time with your..." + (show)
@loribmt

Welcome to Connect, @nasr. I’m sorry to read that you’re having a difficult time with your eyes. What type of symptoms are you having?
Do you feel this is from the medication you’re taking for CML? What does your doctor say about the possibility?

Jump to this post

I am suffer from blurry vision and white water and eye red my doctor treatment me with eye drops

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Mar 21 9:18pm
In reply to @nasr "I am suffer from blurry vision and white water and eye red my doctor treatment me..." + (show)
@nasr

I am suffer from blurry vision and white water and eye red my doctor treatment me with eye drops

Jump to this post

Reading through the potential side effects of Gleevec there is a low percentage of patients who have had eye issues such as watering and blurry vision. It’s unfortunate you’re in that minority of patients having the symptoms.
Has the Gleevec been working well to treat your CML? Would you be able to ask your doctor if there’s another medication for the CML that you could try instead of Gleevec?

REPLY
1 reply
nasr | @nasr | Mar 22 5:59am
In reply to @loribmt "Reading through the potential side effects of Gleevec there is a low percentage of patients who..." + (show)
@loribmt

Reading through the potential side effects of Gleevec there is a low percentage of patients who have had eye issues such as watering and blurry vision. It’s unfortunate you’re in that minority of patients having the symptoms.
Has the Gleevec been working well to treat your CML? Would you be able to ask your doctor if there’s another medication for the CML that you could try instead of Gleevec?

Jump to this post

Gleevec working well and the percent below of limit detection for 12 month when can i stooping gleevec doctor

REPLY
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