Does anyone know anything about T-cell LGL Leukemia?

Jim,

Thanks for your response. I will likely be receiving my first transfusion this week. Any tips on what to expect?

thanks,
Ed

Ed, I will get a transfusion of 2 units of blood tomorrow. (Wednesday). They will give me 50mg of Benadryl IV and a 650mg Tylenol pill. Both before they start the transfusion. Some Docs only give 25mg of Benadryl and in pill form. I've found that the IV is more effective and that the 50mg tends to put me to sleep. The transfusion of two units takes about 4 or 5 hours depending on the speed they set the pump to. The "OPIS" center I go to is first class and brand new with huge recliner chairs, each station with TV and VCR. But after 5 hours in a chair I'm ready to be done. I've been having to go every two to three weeks since April. With the LGL I've got Pure Red-cell Aplasia. My body is not making any new blood, so I'm really transfusion dependent.

I'm usually quite tired the day after the transfusion and somewhat better the second day after. By the thrid day I'm usually pumped up and ready!!! Good luck!!! If you have any questions let me know and let me know how it goes for you.

Jim

Jim,

Thanks again! I appreciate all the info. you have provided about the transfusions. Good luck to you tomorrow!

It looks like I have a blood draw on Wednesday and a transfusion on Friday. We'll see. You have definitely given me some things to consider. No one else had mentioned the Benadryl/Tylenol. I will definitely ask the doctor about that.

By the way, I found another message group in Yahoo Groups on this topic that is pretty active with postings almost daily. Not sure if you have already seen it or not:

http://health.groups.yahoo.com/group/Large_Granular_Lymphocy

Thanks again,
Ed

Ed, thank you for the help site address. It was news to me and I joined. By the way, the OPIS center I go to is part of a large major community hosital and I'm told the tylenol and Benadryl are just "normal" protocol.

Ed, my 2 unit transfusion seemed to come off without any problems. It took about 4.5 hours. My hgb has gone up to 11.2 from 8.8 and I should be good to go for 2 or 3 weeks. I'm pretty tired tonight but that's normal for me after a transfusion. Good luck to you on your first this Friday.

Jim

Hi Jim,

Well, received two pints last Friday. Felt great for two days then sore throat, fever, cough/cold set in. Wednesday blood level was 8.7 - wish it could have been a bit higher - still no energy, hopefully due to cold. Still taking the Methotrexate orally every Thursday. Definitely will not let level go below 8 next time, will get transfusions then. Any info you can give would be most appreciated - thanks Ed.

Ed, I wrote you a note on Yahoo - The one you recommended. I'd start the transfusions at 8.9 - no lower. Much higher energy levels and not nearly as tired. I've had 16 units of blood since mid April this year. Only one time did I have symptoms like the ones you had. The Dr said it could be a reaction the that batch of blood. If you have questions after reading the other web site let me know.

Jim

Anyone has a problem with low platelates and high white cells with low Neutrophils?

Jim,

Thanks so much for kind words. I did check and write on other website - very informative. Need to get two more units soon - hate the thought of being transfusion dependent but if that's what it takes, then that's the treatment necessary to get energy and old self back. Ed.

Hi Barry.

I was diagnosed in Jan 07 with LGL Leukemia. Doctor has said to just monitor it for now by having a blood test every two months. We talked about using Neupogen to bring up the neutrophils if things get worse.  I was wondering how you are doing and if you are still having success with curcumin.  I started to see a Naturopath Doctor and am following her program on strengthening the immune system.  This includes vitamin supplements, botanicals such as astralagus, shiitake mushrooms.  And eating a healthy diet with lots of fruits and vegetables (such as berries, green leafy vegetables, garlic, onions, protein foods). She is also giving acupuncture once a week.  I go back in a month for blood count

thanks

Dan S.