1. < Blood Cancers & Disorders

I am the oldest acute lymphoblastic leukemia patient, alive.

Posted by genechick @genechick, Jul 9, 2012

I am the oldest acute lymphoblastic leukemia patient, alive. Everyday is a new day.

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Víctor Hugo | @vhyp | Jun 30, 2016

Hi, My name is Vícto Hugo. I´m from Equator, My grandma has been diagnosticed LLA, I want to know how is your life with it. She is 86 years old.

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Alyse Brunella | @alysebrunella | Jul 1, 2016

Hi @vhyp, and welcome to Connect. Thanks for reaching out to this group. I'd like to invite @katemn, @69holding, @robbysingh, @ikampel2 and @reflections to this discussion as these members have previously shared their experiences with Leukemia.

Is this a recent diagnosis for your grandma?

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3 replies
Víctor Hugo | @vhyp | Jul 1, 2016
In reply to @alysebrunella "Hi @vhyp, and welcome to Connect. Thanks for reaching out to this group. I'd like to..." + (show)
@alysebrunella

Hi @vhyp, and welcome to Connect. Thanks for reaching out to this group. I'd like to invite @katemn, @69holding, @robbysingh, @ikampel2 and @reflections to this discussion as these members have previously shared their experiences with Leukemia.

Is this a recent diagnosis for your grandma?

Jump to this post

Hi @alysebrunella, thaks for your request. My grandma has been diagnosticed since november 2015. Now she is being treatment with dasanid. But she has not good reactions to this medicine. She is 86 years old and I want to know experiences or other treatments.

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Katherine, Alumni Mentor | @katemn | Jul 1, 2016
In reply to @alysebrunella "Hi @vhyp, and welcome to Connect. Thanks for reaching out to this group. I'd like to..." + (show)
@alysebrunella

Hi @vhyp, and welcome to Connect. Thanks for reaching out to this group. I'd like to invite @katemn, @69holding, @robbysingh, @ikampel2 and @reflections to this discussion as these members have previously shared their experiences with Leukemia.

Is this a recent diagnosis for your grandma?

Jump to this post

.. do you think I should reply?? <br><br><br>Hugs,<br> Katherine

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Víctor Hugo | @vhyp | Jul 1, 2016
In reply to @alysebrunella "Hi @vhyp, and welcome to Connect. Thanks for reaching out to this group. I'd like to..." + (show)
@alysebrunella

Hi @vhyp, and welcome to Connect. Thanks for reaching out to this group. I'd like to invite @katemn, @69holding, @robbysingh, @ikampel2 and @reflections to this discussion as these members have previously shared their experiences with Leukemia.

Is this a recent diagnosis for your grandma?

Jump to this post

Please

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Katherine, Alumni Mentor | @katemn | Jul 1, 2016

Sorry Victor, truthfully that email regarding "should I" was meant for my husband! I accidentally did not change the email address! The reason I questioned whether I should reply or not was because of the difference in the type of leukemia. My husband has CLL .. the chronic type. He was diagnosed in 1995 and was diagnosed as Stage 3 at the time .. sold his company and made a lot of changes in his life at the time to reduce the stress and went down to Stage 1 for a LOT of years until 2 years ago when he was told he was at Stage 4. He was put on a newly approved by the FDA chemotherapy: Imbruvica 140mg 3 capsules 1x day. He has been doing extraordinarily well on this new chemotherapy. Yes he bruised very easily BUT he has gone from needing 10 to 11 hours of sleep a night to now really only needing about an average of 9 hours. He is age 75 and I think doing awfully well since going on Imbruvica November of 2014. I have no idea if that drug would even be advised for your beloved grandmother .. only her doctor could make that decision. I can only speak from our experience.

I can only say your grandmother is very blessed to have you as a grandson seeking answers and acting as her advocate. We have 10 grandchildren of our own and I would love to think each of our 10 would do what you are doing if the need arose. I applaud you .. she must be VERY proud of you!

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2 replies
Víctor Hugo | @vhyp | Jul 1, 2016
In reply to @katemn "Sorry Victor, truthfully that email regarding "should I" was meant for my husband! I accidentally did..." + (show)
@katemn

Sorry Victor, truthfully that email regarding "should I" was meant for my husband! I accidentally did not change the email address! The reason I questioned whether I should reply or not was because of the difference in the type of leukemia. My husband has CLL .. the chronic type. He was diagnosed in 1995 and was diagnosed as Stage 3 at the time .. sold his company and made a lot of changes in his life at the time to reduce the stress and went down to Stage 1 for a LOT of years until 2 years ago when he was told he was at Stage 4. He was put on a newly approved by the FDA chemotherapy: Imbruvica 140mg 3 capsules 1x day. He has been doing extraordinarily well on this new chemotherapy. Yes he bruised very easily BUT he has gone from needing 10 to 11 hours of sleep a night to now really only needing about an average of 9 hours. He is age 75 and I think doing awfully well since going on Imbruvica November of 2014. I have no idea if that drug would even be advised for your beloved grandmother .. only her doctor could make that decision. I can only speak from our experience.

I can only say your grandmother is very blessed to have you as a grandson seeking answers and acting as her advocate. We have 10 grandchildren of our own and I would love to think each of our 10 would do what you are doing if the need arose. I applaud you .. she must be VERY proud of you!

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Dear @katemn, thank you for your words. Really my grandma is very important for me and she is my guide. I love her. I'm really pleased to know your case. Although is not the same sickness, it's good to meet pleople with similar situations. It gives me peace and I'm very sorry for your husband. But I think you are lucky to have your life and your family yet. I hope my grandma could live many years with the sickness but without feel pain. Does your husband continue his life normally?

REPLY
Katherine, Alumni Mentor | @katemn | Jul 1, 2016
In reply to @katemn "Sorry Victor, truthfully that email regarding "should I" was meant for my husband! I accidentally did..." + (show)
@katemn

Sorry Victor, truthfully that email regarding "should I" was meant for my husband! I accidentally did not change the email address! The reason I questioned whether I should reply or not was because of the difference in the type of leukemia. My husband has CLL .. the chronic type. He was diagnosed in 1995 and was diagnosed as Stage 3 at the time .. sold his company and made a lot of changes in his life at the time to reduce the stress and went down to Stage 1 for a LOT of years until 2 years ago when he was told he was at Stage 4. He was put on a newly approved by the FDA chemotherapy: Imbruvica 140mg 3 capsules 1x day. He has been doing extraordinarily well on this new chemotherapy. Yes he bruised very easily BUT he has gone from needing 10 to 11 hours of sleep a night to now really only needing about an average of 9 hours. He is age 75 and I think doing awfully well since going on Imbruvica November of 2014. I have no idea if that drug would even be advised for your beloved grandmother .. only her doctor could make that decision. I can only speak from our experience.

I can only say your grandmother is very blessed to have you as a grandson seeking answers and acting as her advocate. We have 10 grandchildren of our own and I would love to think each of our 10 would do what you are doing if the need arose. I applaud you .. she must be VERY proud of you!

Jump to this post

Yes, Victor .. he lives a very normal life. Last evening we went to dinner and theatre with our daughter and two grandsons .. they stayed with us overnight .. then my husband played 18 holes of golf today with the two teen age grandsons! I consider that a VERY blessed normal life! We don't look at what lies ahead with Stage 4 cancer .. just have an attitude of gratitude for what we do have .. each day is a blessing. Again, your grandmother is blessed to have you .. I wish you well and sending you a hug!

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