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.
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?
I was diagnosed 1 1/2 years ago. I been on Sprycel 50mg which seems to control the CML. The radiation I was exposed to happened over a period of time, several years ago. Just wondering if that was the cause.
Hi @jagnorth. How you got CML may remain a mystery. Exposure to radiation can certainly be a culprit but so can myriad other exposures we pick up in our lifetime as well as completely random mutations which can happen to set the chain of events rolling. Chronic myelogenous leukemia happens when something causes changes to the bone marrow cells. There's no way to prevent chronic myelogenous leukemia. If you get it, there's nothing you could have done to prevent it.
So you start from your diagnosis and now, move forward. Welcome to Mayo Connect. You popped into the perfect discussion to meet up with other members who have been diagnosed with CML. I had AML, CML’s ugly step-sister, almost 6 years ago. From experience I know what a gut punch it is to get a diagnosis of leukemia. But fortunately there are treatments which may help you enjoy a future.
When were you diagnosed? Has a treatment plan been suggested for you?
Hello
I have been on Sprycel since late 2018. Started at 100mg, I also had a roller coaster of BCR results which is fairly common from what I understand. Eventually reduced to 50mg, some side effects subsided and dealing with others. Edema and swelling would be one of them. I have had some significant swelling in my face and eye lids. I have been able to keep it under control after seeing other specialist. ENT, ophthalmology, and infectious disease. I have chosen to continue with the Sprycel simple because the benefits out way the alternative.
Hopefully you can find some way to manage side effects and keep working towards positive labs.
Hello all! I’m Laura & I’m a fairly active 63 year old. I was diagnosed in June 2022. Started with Imatinib, which failed, & I’ve been on Sprycel since Sept 2022. I started on 100mg, then went to 50mg within a week because of fluid retention. In the past few months, the fluid retention has started again, especially around my eyes & around my ankles. My doctor suggested stopping Sprycel for a week to see if that’s the culprit. The swelling is reduced, but I’m not sure if I should be happy about it, since I don’t know what the next step will be. My BCR-ABL has never gotten below .02 & has been a bit of a roller coaster.
Has anyone has a similar experience?
Thanks!
Hello
I have been on Sprycel since late 2018. Started at 100mg, I also had a roller coaster of BCR results which is fairly common from what I understand. Eventually reduced to 50mg, some side effects subsided and dealing with others. Edema and swelling would be one of them. I have had some significant swelling in my face and eye lids. I have been able to keep it under control after seeing other specialist. ENT, ophthalmology, and infectious disease. I have chosen to continue with the Sprycel simple because the benefits out way the alternative.
Hopefully you can find some way to manage side effects and keep working towards positive labs.
Hello all! I’m Laura & I’m a fairly active 63 year old. I was diagnosed in June 2022. Started with Imatinib, which failed, & I’ve been on Sprycel since Sept 2022. I started on 100mg, then went to 50mg within a week because of fluid retention. In the past few months, the fluid retention has started again, especially around my eyes & around my ankles. My doctor suggested stopping Sprycel for a week to see if that’s the culprit. The swelling is reduced, but I’m not sure if I should be happy about it, since I don’t know what the next step will be. My BCR-ABL has never gotten below .02 & has been a bit of a roller coaster.
Has anyone has a similar experience?
Thanks!
I would really appreciate you providing me some information. I was recently diagnosed a few months ago and was told there are no meds to stop the progression of MGUS. You are on some right? Is it for the reason of hoping to stop the progression. Thank you. I would greatly appreciate how you got on these meds and what their purpose is.
Thank you so much.
Hello all! I’m Laura & I’m a fairly active 63 year old. I was diagnosed in June 2022. Started with Imatinib, which failed, & I’ve been on Sprycel since Sept 2022. I started on 100mg, then went to 50mg within a week because of fluid retention. In the past few months, the fluid retention has started again, especially around my eyes & around my ankles. My doctor suggested stopping Sprycel for a week to see if that’s the culprit. The swelling is reduced, but I’m not sure if I should be happy about it, since I don’t know what the next step will be. My BCR-ABL has never gotten below .02 & has been a bit of a roller coaster.
Has anyone has a similar experience?
Thanks!
It's been awhile since I last posted but received news from my doctor a few days ago. Not good news but not bad news. I've been on Sprycel for not quite three years. I've always hoped that one of these appointments he would say that my BCR-ABL would be all zeroes and that one day I would be able to go off medication. While my numbers stay low he said they fluctuate enough that more than likely I would be on medication for the rest of my life. Taking the Sprycel has not been horrible by any means compared to going through intravenous chemotherapy or radiation like my sister did with breast cancer but being able to say I'm in remission would have been wonderful. I can't complain because I'm here seeing my grandkids grow up and she never got to meet her last grandson. Thank you to this group for sharing and listening.
Hi Pam, thank you for sharing the update! I know you were hoping for a magic disappearing act of the CML diagnosis. Dang. But it’s really positive news that the Sprycel is doing its job! Look at it like having high blood pressure or high cholesterol…chronic health conditions where we take meds with annual renewals for life. ☺️
I am sorry for the loss of your sister. Events such as those really do help us put life into perspective. So enjoy your grandkids. Do they live nearby?
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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?
I was diagnosed 1 1/2 years ago. I been on Sprycel 50mg which seems to control the CML. The radiation I was exposed to happened over a period of time, several years ago. Just wondering if that was the cause.
Hi @jagnorth. How you got CML may remain a mystery. Exposure to radiation can certainly be a culprit but so can myriad other exposures we pick up in our lifetime as well as completely random mutations which can happen to set the chain of events rolling. Chronic myelogenous leukemia happens when something causes changes to the bone marrow cells. There's no way to prevent chronic myelogenous leukemia. If you get it, there's nothing you could have done to prevent it.
So you start from your diagnosis and now, move forward. Welcome to Mayo Connect. You popped into the perfect discussion to meet up with other members who have been diagnosed with CML. I had AML, CML’s ugly step-sister, almost 6 years ago. From experience I know what a gut punch it is to get a diagnosis of leukemia. But fortunately there are treatments which may help you enjoy a future.
When were you diagnosed? Has a treatment plan been suggested for you?
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2 ReactionsI’m trying to find out how I got CML. I have had a exposure to radiation many years ago, could that be the cause?
Thank you! I see my oncologist soon & now I have some other possibilities for coping.
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1 ReactionHello
I have been on Sprycel since late 2018. Started at 100mg, I also had a roller coaster of BCR results which is fairly common from what I understand. Eventually reduced to 50mg, some side effects subsided and dealing with others. Edema and swelling would be one of them. I have had some significant swelling in my face and eye lids. I have been able to keep it under control after seeing other specialist. ENT, ophthalmology, and infectious disease. I have chosen to continue with the Sprycel simple because the benefits out way the alternative.
Hopefully you can find some way to manage side effects and keep working towards positive labs.
-
Like -
Helpful -
Hug
2 ReactionsI would really appreciate you providing me some information. I was recently diagnosed a few months ago and was told there are no meds to stop the progression of MGUS. You are on some right? Is it for the reason of hoping to stop the progression. Thank you. I would greatly appreciate how you got on these meds and what their purpose is.
Thank you so much.
Hello all! I’m Laura & I’m a fairly active 63 year old. I was diagnosed in June 2022. Started with Imatinib, which failed, & I’ve been on Sprycel since Sept 2022. I started on 100mg, then went to 50mg within a week because of fluid retention. In the past few months, the fluid retention has started again, especially around my eyes & around my ankles. My doctor suggested stopping Sprycel for a week to see if that’s the culprit. The swelling is reduced, but I’m not sure if I should be happy about it, since I don’t know what the next step will be. My BCR-ABL has never gotten below .02 & has been a bit of a roller coaster.
Has anyone has a similar experience?
Thanks!
Yes, all five of them. Celebrating the youngest (2) tomorrow. 🙂
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1 ReactionHi Pam, thank you for sharing the update! I know you were hoping for a magic disappearing act of the CML diagnosis. Dang. But it’s really positive news that the Sprycel is doing its job! Look at it like having high blood pressure or high cholesterol…chronic health conditions where we take meds with annual renewals for life. ☺️
I am sorry for the loss of your sister. Events such as those really do help us put life into perspective. So enjoy your grandkids. Do they live nearby?