LGL Leukemia - Living from transfusion to transfusion

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LGL Leukemia - Living from transfusion to transfusion

by IOWAGIRL on Tue Apr 08, 2008 12:00 AM

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Hi there... My friend Beth is 35 and has been battling LGL Leukemia for several years.  It went away for abotu two years after a year of oral chemo, and then it came back about three months ago.  They put her back on the oral chemo but she can't keep her hemoglobin up.  A normal person is a 16... her oncologist tries to keep her around a 9 through weekly transfusions.  On Friday she had to get three bags b/c she was down to a 7.  Anyone else going through this?  Do you have any words of wisdom for us?  She is literally living from one blood transfusion to the next... she doesn't even need the weekly checks... she can tell her hemoglobin is really low when she can hear her heart beating in her ears.  It SUCKS! 

RE: LGL Leukemia - Living from transfusion to transfusion

by longbow on Wed Apr 16, 2008 12:00 AM

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Please search the message board, I had that stuff for years and started taking olive leaf extract with wonderful results. I get it from Swanson Health Products and I started to feel better within a few weeks. I take 1500 mg a day. Longbow 

RE: LGL Leukemia - Living from transfusion to transfusion

by Annette_H_3 on Tue Jan 13, 2009 12:00 AM

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On 4/16/2008 longbow wrote:

Please search the message board, I had that stuff for years and started taking olive leaf extract with wonderful results. I get it from Swanson Health Products and I started to feel better within a few weeks. I take 1500 mg a day. Longbow 

I want to thank you for your comments to this website.  I was diagnosed with T-cell LGL in Oct, 2007.  I went on the cyclophosphomide (sp?) and prednisone for 6 months.  While I was on it, I read on this website that you had taken turmeric (or curcummin) and I tried it.  I have been on the turmeric everyday since and the LGL has been in remission for about 9 months.  I still have to be careful around sick people, though.  I still fight infections, but I am not taking anything for the LGL.  I do take shots for Rheumatoid Arthritis (Humira shots).  Just want you to know that we are listening.

 Annette

RE: LGL Leukemia - Living from transfusion to transfusion

by longbow on Sun Mar 15, 2009 12:00 AM

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Hi, the biggest thing for me was olive leaf extract 1500 mg, C 3000 MG, and COQ10 200 mg. every day, and my joint pain is gone too. I have been benign for four years. God Bless, Longbow  

RE: LGL Leukemia - Living from transfusion to transfusion

by Wladyslaw on Thu Jan 21, 2010 05:22 PM

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I put tumeric on almost everything and have combined exercise, macrobiotic diet, with stress reduction and reducing sleep deprivation.  The end result is halving my white cell count three months.  I believe I am assisting my body to destroy/eliminate the malignant white cells.  I am awaiting results of more extensive blood tests.

Wlad

RE: LGL Leukemia - Living from transfusion to transfusion

by Annette_H_3 on Thu Jan 21, 2010 06:02 PM

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On Jan 21, 2010 5:22 PM Wladyslaw wrote:

I put tumeric on almost everything and have combined exercise, macrobiotic diet, with stress reduction and reducing sleep deprivation.  The end result is halving my white cell count three months.  I believe I am assisting my body to destroy/eliminate the malignant white cells.  I am awaiting results of more extensive blood tests.

Wlad

How do you reduce sleep deprivation? I am having trouble sleeping.  If anything wakes me up in the middle of the night, I cannot go back to sleep.  I went for 2 years with my counts being normal.  Now I am back on cyclophosphamide and prednisone, but after taking it for 1 week my counts started coming back to normal so I will only be on this regimen for 3 months total.  I believe the supplements absolutely help level the counts back out.

RE: LGL Leukemia - Living from transfusion to transfusion

by Annette_H_3 on Thu Jan 21, 2010 06:05 PM

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On Apr 08, 2008 12:00 AM IOWAGIRL wrote:

Hi there... My friend Beth is 35 and has been battling LGL Leukemia for several years.  It went away for abotu two years after a year of oral chemo, and then it came back about three months ago.  They put her back on the oral chemo but she can't keep her hemoglobin up.  A normal person is a 16... her oncologist tries to keep her around a 9 through weekly transfusions.  On Friday she had to get three bags b/c she was down to a 7.  Anyone else going through this?  Do you have any words of wisdom for us?  She is literally living from one blood transfusion to the next... she doesn't even need the weekly checks... she can tell her hemoglobin is really low when she can hear her heart beating in her ears.  It SUCKS! 

How is your friend, Beth, doing now?  Just wondering if she had tried any supplements to help keep her counts normal?

RE: LGL Leukemia - Living from transfusion to transfusion

by Wladyslaw on Fri Jan 22, 2010 06:23 PM

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On Jan 21, 2010 6:02 PM Annette_H_3 wrote:

On Jan 21, 2010 5:22 PM Wladyslaw wrote:

I put tumeric on almost everything and have combined exercise, macrobiotic diet, with stress reduction and reducing sleep deprivation.  The end result is halving my white cell count three months.  I believe I am assisting my body to destroy/eliminate the malignant white cells.  I am awaiting results of more extensive blood tests.

Wlad

How do you reduce sleep deprivation? I am having trouble sleeping.  If anything wakes me up in the middle of the night, I cannot go back to sleep.  I went for 2 years with my counts being normal.  Now I am back on cyclophosphamide and prednisone, but after taking it for 1 week my counts started coming back to normal so I will only be on this regimen for 3 months total.  I believe the supplements absolutely help level the counts back out.

Dear Annette,

Exercise helps me.  I am a morning person, so my day starts best if I am up and at em early.  There is a stage of pleasant fatigue that helps at bed time, total darkness, quiet, and warmth are also important to me.  Limited TV news helps also. 

RE: LGL Leukemia - Living from transfusion to transfusion

by Annette_H_3 on Fri Jan 22, 2010 09:20 PM

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On Jan 22, 2010 6:23 PM Wladyslaw wrote:

On Jan 21, 2010 6:02 PM Annette_H_3 wrote:

On Jan 21, 2010 5:22 PM Wladyslaw wrote:

I put tumeric on almost everything and have combined exercise, macrobiotic diet, with stress reduction and reducing sleep deprivation.  The end result is halving my white cell count three months.  I believe I am assisting my body to destroy/eliminate the malignant white cells.  I am awaiting results of more extensive blood tests.

Wlad

How do you reduce sleep deprivation? I am having trouble sleeping.  If anything wakes me up in the middle of the night, I cannot go back to sleep.  I went for 2 years with my counts being normal.  Now I am back on cyclophosphamide and prednisone, but after taking it for 1 week my counts started coming back to normal so I will only be on this regimen for 3 months total.  I believe the supplements absolutely help level the counts back out.

Dear Annette,

Exercise helps me.  I am a morning person, so my day starts best if I am up and at em early.  There is a stage of pleasant fatigue that helps at bed time, total darkness, quiet, and warmth are also important to me.  Limited TV news helps also. 

Thanks for the tips!  I believe it is the prednisone keeping me awake.  I just hope I don't crash once I quit taking it.  I am doing most everything that you have suggested, though.  Take care!

RE: LGL Leukemia - Living from transfusion to transfusion

by SamanthaLGL on Sun Feb 14, 2010 06:22 AM

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I have probably had LGL leukemia for 30 years but just diagnosed with it. Although it was just looking at the T-cells - not thru any bone marrow. I say this because when I was 21, the doc told my parents I had leukemia, then siad I didn't.

I have had low white blood cel count that has lowered a bit lately.

I have night time overheating - I wouldn't really say sweats.

I have started the tumeric regimen and will do a blood test in a few months.

I'm afraid of prednisone - my housemate 15 years ago  was on it and got pretty paranoid, violent, and wacky.

I get tired and uninterested in exercise but that could just be normal from working hard.

No other symptoms really. If I feel a cold coming on, I make sure I get some rest.

And I drink cranberry juice to not get any UTIs.

The 10 year diagnosis is so eroneous - they don't know so shouldn't say.

Good luck to all of you!

I wanted to find out if anyone has any commonality - for instance:

1. I had allergies a lot as a kid. I had sinusitis fairly often - till I had an operation to open up my nasal passages.

2. My mother had breast cancer the first time 3-5 years after I was born - 6 years after my brother was born. They say by the time they discover it (hers was a fist size), it's been there at least ten years.

My brother has hairy cel leukemia.

My other two brothers born within 8 years and 9 years have no symptoms that I know of.

My mother beat it then but died of it 25 years later.

3. My mother smoked a LOT and while I was in utero till I was 9.

4. My eating habits throughout my life - the only vice (I don't drink alcohol - allergic to it) is artificial sweetners - starting with TAB, then the pink one, then the blue one, now the yellow one - sucralose, and sometimes xylitol or stevia.

5. I played sports fairly regularly until I was 40 - just got too dangerous then. And since then get in shape on and off. I can get as high as 10 lbs overweight - but that is just when I travel some times. At home my weight is where it should be.

6. I have controlled blood pressure.

The doc says we should just monitor it until I'm symptomatic.

However I forgot when I was with the doc (so didn't tell her) that I had been having cortisone shots 1-2 times a year for 2 years about every 6 - 12 mos when I was getting run down (couldn't get over a cold was the first time - but lots of people were having the same problem two years ago). That helped a lot. I may stick with that regimen - since I have manageable side effects and am afraid of prednisone or a cancer pill - which is what the doc said would be the next step.

Anyone else have similar experiences - background - or a different background that is different from the norm?

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