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32 yrs old diagnosed with LGLL. anyone else out there?

Liski84
Posts: 1
Joined: Feb 2017

Just found out a few days ago I have LGLL. It's devastating for me because I just turned 32.  I was feeling extremely healthy other then some on and off anxiety issues...now more then ever I'm feeling super anxious..apparently it's very rare and a chronic form. Anyone else been  diagnosed? Feeling very overwhelmed but trying to stay positive. Reading peoples posts about being able to live with LGL for many years with no issues is extremely uplifting for me. if anyone with this form would like to reach out that would be Wonderful 

angel0110
Posts: 3
Joined: Feb 2011

my mom has lgl how are you doing she was told 6 years ago 

 

bros
Posts: 4
Joined: Jun 2015

You are going to be okay. Yes, LGLL is rare, but it is a very survivable cancer - the 10 year survival rate is 89%. I recommend you join the facebook group for LGLL - it is great, just look for "LGL Leukemia Support Group" and join.

sheela
Posts: 1
Joined: Feb 2017

My husband was diagonsed in 2015. Low neutrophil and Platelet count was always below 30. Doctors put him on Methotextrate and after 6 months his blood sugar went up. There is no family history of diabetes and the doctor took him out of Methotrexate and monitored him for 4-6 weeks and his sugar went back to normal. They then switched him to Cytoxin and after 5 months same problem, his blood sugar is high. We are devastated. The doctor says he does not have any choice but to take Diabetes medicine. I am deseparately looking for advise.

thanks

 

srbt3
Posts: 1
Joined: May 2017

I just joined this group looking for other LGLL members.  I was diagnosed 3 years ago and have been on and off treatment since.  Yes, it is a rare form of leukemia but the good thing is that its chronic, which essentially means we simply have to manage it.  I too was both devistated and scared when I was first diagnosed, but after 3 years of educating myself, its much easier to deal with.  I went to see Dr. Loughran who discovered LGLL and would recommend this to everyone.  It was the best decision I made.  There is no one who knows more about this disease then him.  I hope since your diagnosis in February, you are feeling better, both physically and emotionally.  I would love to share experiences with anyone who is going through this.  Good Health to everyone.

Samiegirlsmom
Posts: 1
Joined: May 2017

I was diagnosed last year and they have just been watching my levels.  Doctor wants me to come in next week to look at starting treatment because my counts have dropped.  I am 50 years old having a hard time dealing with this because my daughter lost her dad just 2 1/2 years ago of a massive heart attack.  She's going to be 19 but I just hate that she has already lost her dad and now this.  I am not affraid to die at all but the thought of leaving her without a mom or dad just devistates me.  I'm not willing to go out without a major fight !!

sherrylee27
Posts: 1
Joined: Jun 2017

hi im new at this......not sure what  symptoms to expect as things progress,everything seems frightning.can anyone tell me the different stages of what to expect as the cancer progresses?

 

EValo5's picture
EValo5
Posts: 3
Joined: Jul 2017

I just found out in January that I, too, have LGLL.  It is ok, because I take only One Day at a time! Everyone reacts differently to treatments.  I was on Cytoxin for 3 months, and it just lowered my already low counts further!  The Oncologist put me on Methotrexate, and my last blood work had my counts slowly coming up. I was on Methotrexate years ago for Rheumatoid Arthritis, and it may be the cause for the LGLL, however, I'm all up for fighting fire with fire! I have two friends who had Leukemia (different forms), who are now in Remission, so I remain hopeful!  I have 5 Grandchildren I'm determined to see grow up!  My Son has Huntington's Disease, (a Neurological Disease for which there is no cure), and he is fighting too every day, so I will fight alongside, until the Lord calls me home! Don't be frightened, be strong, stand firm, fight each day, one day at a time to carry on!

 

EValo5's picture
EValo5
Posts: 3
Joined: Jul 2017

Stand Strong, Keep the Faith, Run the Race! I've been fighting a year now.  My Son, with Huntington's Disease (no cure), fights alongside, and he has 3 kids!  My husband passed in 2003 from Huntington's.  Take one Day at a Time, and Cherish every moment as you are able.  Take lots of pictures! Fight on Samiegirlsmom!!

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