1. < Blood Cancers & Disorders

Husband is about to clock up three years with CML

Posted by anita178 @anita178, 23 hours ago

My husband was diagnosed simply from a routine blood test. Please tell anyone you know that you must have a blood test every year! He is on Dasatinib 100mg a day. His percentage of bad blood cells have been going down gradually, but have taken a bit of a jump upward lately. He says that if the drug stops working then there is no other option. I read on one of the comments that the readings do go up and down a bit. I hope this is true, because I think he expects not to live over five years from diagnosis, even though my aunt has made it through and I know others who have.

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Mentor
Lori, Volunteer Mentor | @loribmt | 7 hours ago

Welcome to Connect, @anita178. It is interesting how many blood cancers are found incidentally from a routine blood test for a physical. And you’re right, many doctors no longer order these basic tests along with the annual exams. CML (chronic myeloid leukemia) is one of those types of leukemia that are slow to develop and symptoms come on gradually. So unless there are issues, it isn’t discovered until there is blood work.

CML happens when something causes changes to the bone marrow cells allowing for an overproduction of white blood cells. These are immature, defective cells that, if not controlled, will eventually crowd out healthy blood cells. There are targeted meds to help control this particular overproduction in CML called kinase inhibitors such as Imatinib (Gleevec®), Dasatinib (Sprycel®), Nilotinib, Bosutinib, Ponatinib and Asciminib

If there are changes in your husband’s blast numbers and his doctor is noticing an upward trend, they may consider an alternative treatment plan to get things back under control. There are other options than just the Dasatinib.
Also, if. needed, chemotherapy may be added to his current treatment to knock down the level of blast cells. For many patients, this can help put them into remission and hold the CML at the same level. The only potential cure is a bone marrow transplant. I had one 5+ years ago for AML and that gave me a second chance at life. There are options for hope!

I always think it helps to find out all the information you can about a health issue so here are links to several good articles on CML. Also for more conversations in the forum, simply type in CML in the top search bar! You’ll get a ton of discussion links.
~From Mayo: https://www.mayoclinic.org/diseases-conditions/chronic-myelogenous-leukemia/symptoms-causes/syc-20352417

From Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/21845-chronic-myelogenous-leukemia-cml

From verywellhealth.com: https://www.verywellhealth.com/overview-of-chronic-myeloid-leukemia-4153807

It sounds a little like your husband has it in his head that he’s going to be pushing up daisies from the underside soon. You’ve seen first hand with your aunt and other people who have had CML that this is quite treatable with the advancements in treatments over the years. Being the cheerleader isn’t easy, is it?! I’m glad you’ve joined Connect. I hope with reading through some of the conversations here, you can help your husband see it’s not time to throw in the towel!

When was the last time your husband had a consult with his hematologist oncologist to discuss his blood results and the potential change in his CML?

REPLY
1 reply
living | @living | 4 hours ago
In reply to @loribmt "Welcome to Connect, @anita178. It is interesting how many blood cancers are found incidentally from a..." + (show)
@loribmt

Welcome to Connect, @anita178. It is interesting how many blood cancers are found incidentally from a routine blood test for a physical. And you’re right, many doctors no longer order these basic tests along with the annual exams. CML (chronic myeloid leukemia) is one of those types of leukemia that are slow to develop and symptoms come on gradually. So unless there are issues, it isn’t discovered until there is blood work.

CML happens when something causes changes to the bone marrow cells allowing for an overproduction of white blood cells. These are immature, defective cells that, if not controlled, will eventually crowd out healthy blood cells. There are targeted meds to help control this particular overproduction in CML called kinase inhibitors such as Imatinib (Gleevec®), Dasatinib (Sprycel®), Nilotinib, Bosutinib, Ponatinib and Asciminib

If there are changes in your husband’s blast numbers and his doctor is noticing an upward trend, they may consider an alternative treatment plan to get things back under control. There are other options than just the Dasatinib.
Also, if. needed, chemotherapy may be added to his current treatment to knock down the level of blast cells. For many patients, this can help put them into remission and hold the CML at the same level. The only potential cure is a bone marrow transplant. I had one 5+ years ago for AML and that gave me a second chance at life. There are options for hope!

I always think it helps to find out all the information you can about a health issue so here are links to several good articles on CML. Also for more conversations in the forum, simply type in CML in the top search bar! You’ll get a ton of discussion links.
~From Mayo: https://www.mayoclinic.org/diseases-conditions/chronic-myelogenous-leukemia/symptoms-causes/syc-20352417

From Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/21845-chronic-myelogenous-leukemia-cml

From verywellhealth.com: https://www.verywellhealth.com/overview-of-chronic-myeloid-leukemia-4153807

It sounds a little like your husband has it in his head that he’s going to be pushing up daisies from the underside soon. You’ve seen first hand with your aunt and other people who have had CML that this is quite treatable with the advancements in treatments over the years. Being the cheerleader isn’t easy, is it?! I’m glad you’ve joined Connect. I hope with reading through some of the conversations here, you can help your husband see it’s not time to throw in the towel!

When was the last time your husband had a consult with his hematologist oncologist to discuss his blood results and the potential change in his CML?

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Hello
I was diagnosed in 2018. From my experience having spikes up and down with labs were normal. The better my knowledge and understanding of CML the more I was able to find my new normal.
It can be hard especially early on to stay optimistic of the future, I was all but planning my own funeral. One needs to focus on living the best life you can regardless of what challenges you may encounter.
Wish you and your husband the best.

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