LGL Leukemia

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 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