LGL Leukemia

dadoftwins

My husband was diagnosed with LGL Leukemia 14 months ago (Jan, 2012). We had just lost his Dad to Multiple Myeloma four months previous. It's all been overwhelming. I would like to reach out to any LGL patients, caregivers, spouses etc. It's been very difficult. We thought we were on the right track with Methotrexate and prednisone, but were told yesterday (march 13, 2013) that his hemoglobin took a dive and the LDH spiked - more than doubled from normal range just this past December.

We are still in a bit of shock and down in the dumps. But we have twin 3 1/2 yr old girls who need us.  We did not find each other until we were 35 so we had a bit of a late start. He is now 41 and is quite young to come down with LGLL. Our doctors at OSU James Cancer Clinic are great. But we are left feeling that this damn cancer will always with be with us. The doctors keep trying to reassure us that this is a cancer you live with, and not die from. Right now it's hard to believe that.

If you would like to share your experience with treatment for LGL I'd appreciate it. I'm feeling quite alone and I don't want to show my husband just how terrified I am.

thanks!

Amy

JanellK

Newly Diagnosed

Hi Amy - I am completely brand new to this board.

I was just diagnosed with lgl leukemia on April 8, 2013.  I just reached the bottom marker for diagnosis having been fine in December, 2012 so they believe they caught this extremely early.

Going for an ultrasound of my spleen and bloodwork next Saturday with bone marrow biopsy to follow on May 3rd.

I am 51 years old but showing signs of RA as well - in my finger joints and hands.

I - like you - am completely terrified of what is in store for me although I am told I will be fine.  I also don't like having the feeling of having something that I'm told you can live with and can be managed.

No kids although I do have a sister and brother-in-law very close to me and I babysit my 2-1/2 year old niece every other weekend - so I know how much energy she takes to keep up with so I can only imagine twins.

Maybe we can stay in contact with what is going on - and we can both calm each other?

Janell

 

bjleah

hi i,m new to the board as

hi i,m new to the board as well.

 

from my own perspective  i was diagnosed with lgll in the summer of my 30th birthday and went through hell all the usual mental lows, depression, anger and then denial. it was so hard to get any information. i live in australia and there was no support what so ever  i am now happt to say im 53 and although i am still living with lgll treatments consisting of cyclosporins ad hock. it is in my oppinion it's the leukemia to have when you dont want leukemia

Ennlisa

Hello Amy LGL Husbands

My husband as well  has just been diagnosed with lgl jan 30th 2013 after years of constant head aches every winter getting sick every other week and allergys and feeling drained and tired and just not his usual self about 6 years ago he got pnemonia and his white blood count was really really super low they said it was due to him being sick they kept in hospital for a week and still low but sent home he got after almost 9 years of weakness and headaches told alll along he has had the lgl he went to a different doctor and different state to another doctor and was called back after the results of blood work to come back that he had severe enemia and needed blood asap! he did  not have enough oxegon in his blood for his heart to function properly so after waiting for all the biaopsy results and blood work and heart and bone test done which was a month later they prescribed him 9 methotrexates once a week along with folic acid and a multivitamin and after every other two weeks of getting 2 pints of blood for the first 2 months of taking medicine on his 9th week dose we get the results of his blood work gone up almost 2.4 points in the right direction it seems like its not gonna change and everything is standing still but so far everything is going forward as doctor stated it is taking a while but he has had it for almost 9 years and managed to be ok weak and sick but he is a very strong man i understand what you mean that you feel alone we are in a state all alone we moved a year ago away for work and 6 months after being here we find this out i also have a 3 year old and a teen ager we have been together 21 years he is 41 and i am 40 ... its hard and i honestly thought i could not go thru this alone but i had to my family knows and to be honest dont care... i think there thought is ignore the situation and it will or we will go away its sad but true i only focus on our family and make every moment count.... feeling alone and not even a phone call to get an update feels even more depressing but we are women and have to be strong my oldest doesnt know exactly what is going on but she knows dads sick and needs blood sometimes it was hard enough for her to move to a different state ....im sure in time i will explain in more detail what is actually going on with dad ... but as for my little one well we just appreciate what we have and move forward but believe me when i say i was not always feeling this way i wanted to know WHY??? US?? we are always the first two to help and lend a hand to any one in need especially my husband he will never say no to anyone that needs help or a job...he will hire u if you are willing to work....if you need someone to talk to or compare notes please email me or text 209-321-8884 i dont check this board often but i will from now on try to ihope this helps you are not alone...Also there is a dr in PA that discovered LGL his notes and advice online explain alot of what is going on and options there is out there as far as medication...

dadoftwins

JanellK said:

Newly Diagnosed

Hi Amy - I am completely brand new to this board.

I was just diagnosed with lgl leukemia on April 8, 2013.  I just reached the bottom marker for diagnosis having been fine in December, 2012 so they believe they caught this extremely early.

Going for an ultrasound of my spleen and bloodwork next Saturday with bone marrow biopsy to follow on May 3rd.

I am 51 years old but showing signs of RA as well - in my finger joints and hands.

I - like you - am completely terrified of what is in store for me although I am told I will be fine.  I also don't like having the feeling of having something that I'm told you can live with and can be managed.

No kids although I do have a sister and brother-in-law very close to me and I babysit my 2-1/2 year old niece every other weekend - so I know how much energy she takes to keep up with so I can only imagine twins.

Maybe we can stay in contact with what is going on - and we can both calm each other?

Janell

 

hi

HI Janell, Just read your reply to my post. How did your bone marrow biopsy go?  I hope you are doing well. 

Where are you being treated?

We are in Columbus OH at Ohio State Med center - the James Cancer Institute.

But we are getting a second opinion from Cleveland Clinic next week.

 

I'd love to stay in touch.  Be strong. 

amy

dadoftwins

Ennlisa said:

Hello Amy LGL Husbands

My husband as well  has just been diagnosed with lgl jan 30th 2013 after years of constant head aches every winter getting sick every other week and allergys and feeling drained and tired and just not his usual self about 6 years ago he got pnemonia and his white blood count was really really super low they said it was due to him being sick they kept in hospital for a week and still low but sent home he got after almost 9 years of weakness and headaches told alll along he has had the lgl he went to a different doctor and different state to another doctor and was called back after the results of blood work to come back that he had severe enemia and needed blood asap! he did  not have enough oxegon in his blood for his heart to function properly so after waiting for all the biaopsy results and blood work and heart and bone test done which was a month later they prescribed him 9 methotrexates once a week along with folic acid and a multivitamin and after every other two weeks of getting 2 pints of blood for the first 2 months of taking medicine on his 9th week dose we get the results of his blood work gone up almost 2.4 points in the right direction it seems like its not gonna change and everything is standing still but so far everything is going forward as doctor stated it is taking a while but he has had it for almost 9 years and managed to be ok weak and sick but he is a very strong man i understand what you mean that you feel alone we are in a state all alone we moved a year ago away for work and 6 months after being here we find this out i also have a 3 year old and a teen ager we have been together 21 years he is 41 and i am 40 ... its hard and i honestly thought i could not go thru this alone but i had to my family knows and to be honest dont care... i think there thought is ignore the situation and it will or we will go away its sad but true i only focus on our family and make every moment count.... feeling alone and not even a phone call to get an update feels even more depressing but we are women and have to be strong my oldest doesnt know exactly what is going on but she knows dads sick and needs blood sometimes it was hard enough for her to move to a different state ....im sure in time i will explain in more detail what is actually going on with dad ... but as for my little one well we just appreciate what we have and move forward but believe me when i say i was not always feeling this way i wanted to know WHY??? US?? we are always the first two to help and lend a hand to any one in need especially my husband he will never say no to anyone that needs help or a job...he will hire u if you are willing to work....if you need someone to talk to or compare notes please email me or text 209-321-8884 i dont check this board often but i will from now on try to ihope this helps you are not alone...Also there is a dr in PA that discovered LGL his notes and advice online explain alot of what is going on and options there is out there as far as medication...

hi

Hi Ennlisa,

 

thanks for your reply.  Hearing from another wife has helped.  Just knowing you're there.  thank you.   How is DH (dear husband) feeling?  Are you going to see Dr. Loughran at Penn State?  I've read everything he's published, every journal article, every interview, everything. 

 

I've also read a lot about vitamin C and cancer -see. Dr. Linus Pauling.  But of course when I brought it up to the oncologist a couple weeks ago they sluff it off b/c there's no money for doctors in natural therapies - only big Pharm.   I'm not a health nut.  I'm just a wife trying to help her husband and I don't take NO for an answer.  EVER!  I have my DH on 5000 mg of Vitamin C a day...but I know that is not enough. 

 

It's just so frustrating.  I too don't check this site very often.  but I will be around. 

 

Please let me know if I can help you at all.  Our journeys so far sound pretty similar (minus the teenager...I'm not looking forward to that with twins.  LOL)  but just to insert my opionion:  don't leaver her in the dark.  not knowing can spark even more stress on a teenager. and goodness knows that have a lot of stress - real or perceived.  Give her more credit that she can handle the news.  You just might be surprised.  Of course, I'd leave out the part about  no cure etc....but she's probably wired in and will google it herself.  so better to hear it from you and her Dad.  that's my two cents.  :>)

 

amy in Columbus

Italiangirl87

Hello everyone, I'm an Italian girl who is looking for information for my dad's LGLL. Is there anyone who can support me?