It’s very encouraging that the Gleevec is working well for you. So for that reason I’m sure your doctor will have you continue with that medication. Whether or not it’s responsible for your current eye symptoms, that is something you may have to discuss with your doctor. You’d hate to interfere with the success of the Gleevec.
Only your own doctor can make the determination of changing dosages or stopping the Gleevec. I wish you continued success with your CML journey. Have you talked to your doctor about possibly changing dosages to see if it may help clear your vision symptoms?
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?
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?
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?
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.
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.
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?
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?
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.
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.
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?
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.
Connect
Connect
Like
Helpful
Hug
It’s very encouraging that the Gleevec is working well for you. So for that reason I’m sure your doctor will have you continue with that medication. Whether or not it’s responsible for your current eye symptoms, that is something you may have to discuss with your doctor. You’d hate to interfere with the success of the Gleevec.
There have been studies done which apparently indicate that some patients who remain in remission for 3 years or more may actually benefit from stopping the Gleevec. Here is a link to one of those articles from Cancer.gov: https://www.cancer.gov/news-events/cancer-currents-blog/2020/cml-stopping-tki-treatment-improves-quality-of-life
Only your own doctor can make the determination of changing dosages or stopping the Gleevec. I wish you continued success with your CML journey. Have you talked to your doctor about possibly changing dosages to see if it may help clear your vision symptoms?
Gleevec working well and the percent below of limit detection for 12 month when can i stooping gleevec doctor
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?
-
Like -
Helpful -
Hug
1 ReactionI am suffer from blurry vision and white water and eye red my doctor treatment me with eye drops
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.
-
Like -
Helpful -
Hug
1 ReactionWelcome 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?
-
Like -
Helpful -
Hug
1 ReactionI 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
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.
-
Like -
Helpful -
Hug
2 ReactionsHi @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?
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.