T-Cell LGL treatment

Jim 49
Jim 49 Member Posts: 3 Member
edited October 2022 in Leukemia #1

In 2012 I was diagnosed with MDS, but later on they diagnosed T-Cell LGL.

At one point, I needed a blood transfusion every three weeks. I was put on methotrexaat for 7 months without any effect. After a consult with Professor Schouten in Maastricht, the Netherlands, I was put on neoral ciclosporine and, to my surprise, it actually turned out to be very effective. I started using it about 15 weeks ago and haven't had a single blood transfusion since. My HB has been steadily increasing and where it was once around 4, it is now 7.5.

I share this here in the hope that it can and will be of help to others.

One thing in closing, I am glad I didn't give up hope. I hope you won't either.

Good luck everyone!

«1

Comments

  • bendanyh
    bendanyh Member Posts: 12
    #2
    Good to know

    Hi Jim,

    Good to know what you've shared. Wondering whether you had any transfusion bewteen HB 4 and 7.5? Thanks.

  • bendanyh
    bendanyh Member Posts: 12
    #3
    Good to know

    Hi Jim,

    Good to know what you've shared. Wondering whether you had any transfusion bewteen HB 4 and 7.5? Thanks.

  • Jim 49
    Jim 49 Member Posts: 3 Member
    #4
    bendanyh said:

    Good to know

    Hi Jim,

    Good to know what you've shared. Wondering whether you had any transfusion bewteen HB 4 and 7.5? Thanks.

    Hi Ben,
    No, not a single

    Hi Ben,

    No, not a single transfusion.

  • bendanyh
    bendanyh Member Posts: 12
    #5
    Jim 49 said:

    Hi Ben,
    No, not a single

    Hi Ben,

    No, not a single transfusion.

    Thanks for sharing

    Jim,

    Amazing that you did't have any tranfusion at 4. I'm going into week 7 taking methotrexate. It really takes time. I'll need another transfusion this week. My doctor normally orders a transfusion if my HB is below 8. Thanks again for sharing. Best wishes!

  • Jim 49
    Jim 49 Member Posts: 3 Member
    #6
    bendanyh said:

    Thanks for sharing

    Jim,

    Amazing that you did't have any tranfusion at 4. I'm going into week 7 taking methotrexate. It really takes time. I'll need another transfusion this week. My doctor normally orders a transfusion if my HB is below 8. Thanks again for sharing. Best wishes!

    Hi Ben, for good order: I

    Hi Ben, for good order: I normally did get transfusions when the HB was below 5, althought I once didn't get a transfusion until it was at 3.9, but after being put on neoral ciclosporine, and my HB was at 4 at the time, the HB went up so fast that I haven't needed a transfusion since. The reason why my doctor waited so long for transfusions is because it isn't particularly good for the body, e.g. the build up of iron. Good luck!

  • bendanyh
    bendanyh Member Posts: 12
    #7
    Jim 49 said:

    Hi Ben, for good order: I

    Hi Ben, for good order: I normally did get transfusions when the HB was below 5, althought I once didn't get a transfusion until it was at 3.9, but after being put on neoral ciclosporine, and my HB was at 4 at the time, the HB went up so fast that I haven't needed a transfusion since. The reason why my doctor waited so long for transfusions is because it isn't particularly good for the body, e.g. the build up of iron. Good luck!

    Update

    Hi Jim, It's been a while. In bewteen unexpected things happened to me. Mainly some kind of medication allergy/infection/side effects, two times, that caused me some troubles. We've learnt that I can't touch Bectrim and/or Exjade. Anyway, I want to reoprt a little good news today, I'll put that aside for now. As I mentioned I've tried methotrexate as my first treatment early in the year and it didn't work (on it for 11 weeks). Then I switched to cycrosporine for a while until I got first severe side effect and I stopped it. I then started taking cytoxan (cyclophosphamide) in August. My hemoglobin went from two weeks ago's 8.8 (it was 9.0 three weeks ago after the transfusion) to today's 9.2! This is the first time it went up after the transfution. It also happens to be that this is my 9th week on cytoxan. I am glad that I won't need a tranfusion now (It was about a month ago when I last had a transfution). So how have you been? Has your HB improved further? Take care!      

    Update 12/21/14:

    My doctor reduced my Cytoxan dosage hoping to bring up the WBC and it did. My hemoglonin has been going up. It was 12.1 two week ago. The last trnasfusion was on mid september this year. This is a huge improvement. Looks Cytoxan is working for me. I was told that Cytoxan is NOT a long-term solution, so I am hoping the dosage will be reduced again soon.   

  • IVAA_Cures_LGL
    IVAA_Cures_LGL Member Posts: 4
    #8
    Intravenous Ascorbic Acid Cured Me

    After 16 years of sufffering from T-LGL Luekemia, I cured it with IV Ascorbic Acid (IVAA). I have had normal blood counts since the first day I began infusions June 2006. It's the least harmful treatment you can take and I know of one other person who tried it and reported a remission.

    Read this research article published in the canadian Medical Association Journal: http://www.cmaj.ca/content/174/7/937.full

  • bendanyh
    bendanyh Member Posts: 12
    #9
    Update 2015-10-31 T-Cell Leukemia treated

    October 2014 Cytoxan dosage reduced to 75mg/Day (100/50 alternate). January 2015 Reduced again to 50mg/Day. May 2015 My doctor said that I can stop the treatment and I did. My hemoglobin is about 14 now. Just need to check every 3 months. Good luck everyone!

  • bendanyh
    bendanyh Member Posts: 12
    edited June 2016 #10
    Status Update 2016-06-22 T-Cell Leukemia treated

    I stopped the Cytoxan in May, 2015. It's been over a year and I feel good. Hemoglobin has been maintaining at 14 level lately. It is treatible. To those who are still fighting this desease: Be positive! Best wishes! 

  • bendanyh
    bendanyh Member Posts: 12
    #11
    Jim 49 said:

    Hi Ben, for good order: I

    Hi Ben, for good order: I normally did get transfusions when the HB was below 5, althought I once didn't get a transfusion until it was at 3.9, but after being put on neoral ciclosporine, and my HB was at 4 at the time, the HB went up so fast that I haven't needed a transfusion since. The reason why my doctor waited so long for transfusions is because it isn't particularly good for the body, e.g. the build up of iron. Good luck!

    How are you?

    Hope all is well with you.

  • lloyd2
    lloyd2 Member Posts: 4
    edited June 2016 #12
    Jim 49 said:

    Hi Ben, for good order: I

    Hi Ben, for good order: I normally did get transfusions when the HB was below 5, althought I once didn't get a transfusion until it was at 3.9, but after being put on neoral ciclosporine, and my HB was at 4 at the time, the HB went up so fast that I haven't needed a transfusion since. The reason why my doctor waited so long for transfusions is because it isn't particularly good for the body, e.g. the build up of iron. Good luck!

    jim

    how does one afford transfusions? I have to pay $734 after insurance...Florida Blue

  • Bozo58
    Bozo58 Member Posts: 1
    edited January 2017 #13
    T cell LGL

    I am 58 years old been dx with T cell LGl. Slow growing. Lots of fatigue and nausea when I eat. what sysmtoms have others had? 

  • angel0110
    angel0110 Member Posts: 3
    edited February 2017 #14
    Bozo58 said:

    T cell LGL

    I am 58 years old been dx with T cell LGl. Slow growing. Lots of fatigue and nausea when I eat. what sysmtoms have others had? 

    My mom has this too Dx 6 yrs

    My mom has this too Dx 6 yrs ago she was fine till last few months sweatnig bad and really tired but blood wrk was good on tuesday  hate this  for you both

  • Miguel1965
    Miguel1965 Member Posts: 1 Member
    #15
    T-Cell LGL

    I was just recently diganose with this rare form of LGL Leukeimia how long can a person live with 

    form of 

    leukeimia

     

  • Marsha_B
    Marsha_B Member Posts: 2
    #16
    bendanyh said:

    Update

    Hi Jim, It's been a while. In bewteen unexpected things happened to me. Mainly some kind of medication allergy/infection/side effects, two times, that caused me some troubles. We've learnt that I can't touch Bectrim and/or Exjade. Anyway, I want to reoprt a little good news today, I'll put that aside for now. As I mentioned I've tried methotrexate as my first treatment early in the year and it didn't work (on it for 11 weeks). Then I switched to cycrosporine for a while until I got first severe side effect and I stopped it. I then started taking cytoxan (cyclophosphamide) in August. My hemoglobin went from two weeks ago's 8.8 (it was 9.0 three weeks ago after the transfusion) to today's 9.2! This is the first time it went up after the transfution. It also happens to be that this is my 9th week on cytoxan. I am glad that I won't need a tranfusion now (It was about a month ago when I last had a transfution). So how have you been? Has your HB improved further? Take care!      

    Update 12/21/14:

    My doctor reduced my Cytoxan dosage hoping to bring up the WBC and it did. My hemoglonin has been going up. It was 12.1 two week ago. The last trnasfusion was on mid september this year. This is a huge improvement. Looks Cytoxan is working for me. I was told that Cytoxan is NOT a long-term solution, so I am hoping the dosage will be reduced again soon.   

    Dosage of Cytoxan?

    Hi bendanyh.  What was your original dosage of Cytoxan and what did they reduce the dosage to.  Thank you!

  • Marsha_B
    Marsha_B Member Posts: 2
    edited January 2018 #17
    bendanyh said:

    Status Update 2016-06-22 T-Cell Leukemia treated

    I stopped the Cytoxan in May, 2015. It's been over a year and I feel good. Hemoglobin has been maintaining at 14 level lately. It is treatible. To those who are still fighting this desease: Be positive! Best wishes! 

    Side effects of Cytoxan?

    Did you have any side effects when you were on Cytoxan?  Or has anyone else on Cytroxan had side effects?  Thanks.

  • Tapioca
    Tapioca Member Posts: 2
    edited February 2018 #18
    t-cell LGL leukemia... or not?

    Hallo, I'm a 43 y.o. male and I've been diagnosed of t-cell LGL leukemia... or maybe not! I can't still understand the mechanism of this illness, and doctors can't give exact answers, maybe someone of you can help me. I write "maybe not" because actually I do not have any kind of cytopenia, neutrophils are higher than 2000, lymphocites low then 3000, hemoglobin is 13. But I have 22% lymphocites with LGL caratheristics and t-cell receptor analysis defined a monoclonal T-cell proliferation. Parameters of immunogram blood tests are now the same than 12 years ago (even better). In 2006 I tried to understand with an hematologist why I had always in the analys an higher % of lymphocites compared to neutrophils, a low CD4/CD8, very low B lymphocites and moderate high t-killers. Last year in september, after recurrent infections I tried again to understand what was the deal, and only now after several months and doctors, looks like that someone understood what is the problem. Since my clinical picture is good and I do not have any cytopenia, she said I don't need any treatment, I should just be under observation. I guess this process is going on not less then 12 years (probably more), just earlier noone gave a name to it. I read on the net that medium life of people with this kind of desease is 10 years... but from when? From the moment the disorder begin (in this case I should be really lucky since I have it since 12+ years) or from the moment of a cytopenia conditions that justify a treatment? With CBC analysis parameter that I have now, can I call myself a leukemic or I have just a chronic disorder?

  • ladybug63
    ladybug63 Member Posts: 3
    #19
    Tapioca said:

    t-cell LGL leukemia... or not?

    Hallo, I'm a 43 y.o. male and I've been diagnosed of t-cell LGL leukemia... or maybe not! I can't still understand the mechanism of this illness, and doctors can't give exact answers, maybe someone of you can help me. I write "maybe not" because actually I do not have any kind of cytopenia, neutrophils are higher than 2000, lymphocites low then 3000, hemoglobin is 13. But I have 22% lymphocites with LGL caratheristics and t-cell receptor analysis defined a monoclonal T-cell proliferation. Parameters of immunogram blood tests are now the same than 12 years ago (even better). In 2006 I tried to understand with an hematologist why I had always in the analys an higher % of lymphocites compared to neutrophils, a low CD4/CD8, very low B lymphocites and moderate high t-killers. Last year in september, after recurrent infections I tried again to understand what was the deal, and only now after several months and doctors, looks like that someone understood what is the problem. Since my clinical picture is good and I do not have any cytopenia, she said I don't need any treatment, I should just be under observation. I guess this process is going on not less then 12 years (probably more), just earlier noone gave a name to it. I read on the net that medium life of people with this kind of desease is 10 years... but from when? From the moment the disorder begin (in this case I should be really lucky since I have it since 12+ years) or from the moment of a cytopenia conditions that justify a treatment? With CBC analysis parameter that I have now, can I call myself a leukemic or I have just a chronic disorder?

    You can live a long time with

    You can live a long time with T cell. My doctor assures me It won't be the leukemia that kills me but a germ. I've been on Cytoxin (generic) and predisone since 10/15. I keep my appts. for blood work and careful about where I go and what I touch. If I feel bad, I don't go out. I started with 0, yes zero netrophils. Now I'm able to keep them above 2000. I have seen the 10 year prognosis but my doctor doesn't agree. If you eat right. get some exercise and take your meds.

  • ladybug63
    ladybug63 Member Posts: 3
    #20
    Marsha_B said:

    Side effects of Cytoxan?

    Did you have any side effects when you were on Cytoxan?  Or has anyone else on Cytroxan had side effects?  Thanks.

    Cytoxin side effects

    Yes. Nausea and vomiting from the beginning. Diarrhea came soon after.  I took zofran with little help. Promethazine seems to be better but not always. The nausea comes and goes now.

  • bendanyh
    bendanyh Member Posts: 12
    edited March 2020 #21
    Marsha_B said:

    Dosage of Cytoxan?

    Hi bendanyh.  What was your original dosage of Cytoxan and what did they reduce the dosage to.  Thank you!

    Cytoxan Dosage

    Hi Marsha,

    I am so sorry for the late reply. I don't know why I didn't get a notice when you posted your question.

    My original dosage was 50mg x2 = 100mg. It was reduced to 50mg when we saw improvement. 

    My hematologist gave me "remisson" two months ago! 

    Best wishes

     

Discussion Boards