Lisa Lucier, Moderator | @lisalucier | Feb 17, 2019
Hi, @suzie71 - thanks for sharing that you've had Chronic Myelogenous Leukemia (CML) for 20 years and are available for anyone who is new to it or struggling with it. I'm sure other patients could use your support.
Wondering if you could share a briefly about what symptoms you were having prior to your diagnosis and what treatment you've gone through over the years?
Hi, @suzie71 - thanks for sharing that you've had Chronic Myelogenous Leukemia (CML) for 20 years and are available for anyone who is new to it or struggling with it. I'm sure other patients could use your support.
Wondering if you could share a briefly about what symptoms you were having prior to your diagnosis and what treatment you've gone through over the years?
HI: I had no symptoms. That is why its so important to do regular blood tests. I had a elevated WBC, and I worked for the Oncologist who found my Leukemia. He did not waste time to do a bone marrow biopsy on me. I started with Heavy Duty Interferon shots daily, and then Ara-C shots on alternating weeks. It became too much and was effecting my liver. I had to stop treatment. Just then I saw a Clinical Trial going on in NY at NY Presbyterian Hospital. I went to NY, and was accepted into the trial for at that time was STI-571. After approval it became Gleevec. I took Gleevec for 18 years, until I filled up with fluid that was giving me heart problems. I went off my Gleevec in Feb. of 2018, and to this day I am still not on any TKI drug. I am being monitored so that if my Leukemia should start to surface again that I will be put on a new TKI drug. I have been undetected since July of 2001. I have so many other health issues to deal with, therefore, I Thank God Everyday for what he does to keep me going
@lisalucier thanks for linking to the patient education program about CML. I found it helpful and wish I had known about it when I was first diagnosed.
Jake, in the meantime, can you tell us a bit more about you? I assume that you diagnosis date was a typo since it's not quite yet June 2022 😉 When were you diagnosed? What treatment(s) have you had? How are you doing today?
I had CML since 1998, and went through Interferon and Ara-C which did nothing for me. I started Gleevec in Oct of 2000, and continued to take it all the way up to 2018. I have been off all treatment since Feb of 2018, and have been PCRU since 2002. My doctor told me in January that I am declared cured after all these years. I just want those who have CML that it is not a death sentence. Newer and Better treatments will get you through this disease without a BMT. I just wanted to encourage anyone, especially newly diagnosed patients that they can beat this disease.
I had CML since 1998, and went through Interferon and Ara-C which did nothing for me. I started Gleevec in Oct of 2000, and continued to take it all the way up to 2018. I have been off all treatment since Feb of 2018, and have been PCRU since 2002. My doctor told me in January that I am declared cured after all these years. I just want those who have CML that it is not a death sentence. Newer and Better treatments will get you through this disease without a BMT. I just wanted to encourage anyone, especially newly diagnosed patients that they can beat this disease.
OMG! SUZIE71! That's wonderful news! Congratulations! I'm so happy to hear of your cure. I myself am getting ready to come off of Dasatinib for 2 years to see if I'm cured. My last BCR showed undetected. If in the next 3 months it shows undetected, then fingers crossed, I might be cured.
*I was diagnosed in 1995. Hydroxeria, then interferon, I was on the study for Gleevec (STI571 was it clinical trial name here in London) then Dasatinib.*
Jake, there are many many people that have been cured and many are still living with CML. IF you want to talk, I'm just a window screen away, sweetie. I'm sending you healing thoughts and gentle hugs.
Thanks everyone! I was diagnosed a year ago and have been on gleevec since July 2021. I hope that eventually I will get to the point where I can try coming off medication but I know that is far in the future for me. My BCR-ABL went up slightly at my last blood draw so I may need to switch to on of the other TKI medications.
I was diagnosed this past June with CML. Currently on Sprycel which seems to be working. My bcr-abl has come down when I just got my first results since being diagnosed. However I experience a lot of body pain in my muscles and joints especially my knees and toes and elbows. I am on a lot of pain meds currently but wondering if anyone else has had this issue and if it will go away??? Still very new to all of this so looking for some people that have CML as well….
Connect
Connect
Like
Helpful
Hug
Hi, @suzie71 - thanks for sharing that you've had Chronic Myelogenous Leukemia (CML) for 20 years and are available for anyone who is new to it or struggling with it. I'm sure other patients could use your support.
In case you've not seen it in your journey with this illness, here is Mayo Clinic's information on CML https://www.mayoclinic.org/diseases-conditions/chronic-myelogenous-leukemia/symptoms-causes/syc-20352417.
Wondering if you could share a briefly about what symptoms you were having prior to your diagnosis and what treatment you've gone through over the years?
HI: I had no symptoms. That is why its so important to do regular blood tests. I had a elevated WBC, and I worked for the Oncologist who found my Leukemia. He did not waste time to do a bone marrow biopsy on me. I started with Heavy Duty Interferon shots daily, and then Ara-C shots on alternating weeks. It became too much and was effecting my liver. I had to stop treatment. Just then I saw a Clinical Trial going on in NY at NY Presbyterian Hospital. I went to NY, and was accepted into the trial for at that time was STI-571. After approval it became Gleevec. I took Gleevec for 18 years, until I filled up with fluid that was giving me heart problems. I went off my Gleevec in Feb. of 2018, and to this day I am still not on any TKI drug. I am being monitored so that if my Leukemia should start to surface again that I will be put on a new TKI drug. I have been undetected since July of 2001. I have so many other health issues to deal with, therefore, I Thank God Everyday for what he does to keep me going
-
Like -
Helpful -
Hug
6 ReactionsHi @suzie71
If you are still here, I would love to connect. I was diagnosed during June 2022.
@lisalucier thanks for linking to the patient education program about CML. I found it helpful and wish I had known about it when I was first diagnosed.
-
Like -
Helpful -
Hug
1 ReactionHi Jake, welcome to the CML discussion group. You may also be interested in this related discussion where you'll meet fellow CML-ers like @living @anglis @craighatescancer as well as @suzie71
- Chronic Myeloid Leukemia (CML) https://connect.mayoclinic.org/discussion/chronic-myeloid-leukemia-1/
Jake, in the meantime, can you tell us a bit more about you? I assume that you diagnosis date was a typo since it's not quite yet June 2022 😉 When were you diagnosed? What treatment(s) have you had? How are you doing today?
I had CML since 1998, and went through Interferon and Ara-C which did nothing for me. I started Gleevec in Oct of 2000, and continued to take it all the way up to 2018. I have been off all treatment since Feb of 2018, and have been PCRU since 2002. My doctor told me in January that I am declared cured after all these years. I just want those who have CML that it is not a death sentence. Newer and Better treatments will get you through this disease without a BMT. I just wanted to encourage anyone, especially newly diagnosed patients that they can beat this disease.
-
Like -
Helpful -
Hug
6 ReactionsOMG! SUZIE71! That's wonderful news! Congratulations! I'm so happy to hear of your cure. I myself am getting ready to come off of Dasatinib for 2 years to see if I'm cured. My last BCR showed undetected. If in the next 3 months it shows undetected, then fingers crossed, I might be cured.
*I was diagnosed in 1995. Hydroxeria, then interferon, I was on the study for Gleevec (STI571 was it clinical trial name here in London) then Dasatinib.*
-
Like -
Helpful -
Hug
1 ReactionJake, there are many many people that have been cured and many are still living with CML. IF you want to talk, I'm just a window screen away, sweetie. I'm sending you healing thoughts and gentle hugs.
-
Like -
Helpful -
Hug
1 ReactionThanks everyone! I was diagnosed a year ago and have been on gleevec since July 2021. I hope that eventually I will get to the point where I can try coming off medication but I know that is far in the future for me. My BCR-ABL went up slightly at my last blood draw so I may need to switch to on of the other TKI medications.
-
Like -
Helpful -
Hug
1 ReactionI was diagnosed this past June with CML. Currently on Sprycel which seems to be working. My bcr-abl has come down when I just got my first results since being diagnosed. However I experience a lot of body pain in my muscles and joints especially my knees and toes and elbows. I am on a lot of pain meds currently but wondering if anyone else has had this issue and if it will go away??? Still very new to all of this so looking for some people that have CML as well….