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T-Cell LGL treatment

Jim 49
Posts: 3
Joined: Mar 2014

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!

bendanyh
Posts: 11
Joined: Mar 2014

Hi Jim,

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

bendanyh
Posts: 11
Joined: Mar 2014

Hi Jim,

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

Jim 49
Posts: 3
Joined: Mar 2014

Hi Ben,

No, not a single transfusion.

bendanyh
Posts: 11
Joined: Mar 2014

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
Posts: 3
Joined: Mar 2014

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
Posts: 11
Joined: Mar 2014

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.   

bendanyh
Posts: 11
Joined: Mar 2014

Hope all is well with you.

lloyd2's picture
lloyd2
Posts: 4
Joined: Jun 2016

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

IVAA_Cures_LGL
Posts: 4
Joined: Sep 2015

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
Posts: 11
Joined: Mar 2014

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
Posts: 11
Joined: Mar 2014

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! 

Bozo58
Posts: 1
Joined: Jan 2017

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
Posts: 3
Joined: Feb 2011

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

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