The Leukemia & Lymphoma Society - Fighting Blood Cancers

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3 Replies Last post: Dec 7, 2009 11:04 AM by HappyPrince  
Nigoo   1 posts since
Oct 10, 2009
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Oct 10, 2009 7:57 PM

Diagnosed with lymphoblastic lymphoma stage 4 at 13yrs....

My neice was just diagnosed with lymphoblastic lymphoma stage 4....Last week this time none of us would imagine that she had anything like that. Couple of weeks ago she started with a cold and the cough got worse everyday. Doctor prescribed an x-ray and they found a mediastinal mass as big as a small football. One of her supraclavicular lymph nodes was enlarged so they took a biopsy...result positive. Doctors have started steroid treatment to shrink the mass and are starting the chemo in 5 days....Our whole family is devastated cause my neice is the most beautiful, lively, friendly person....she is so full of life. Can someone give me an input about the prognosis?  Did anyone have a similar experience around the same age group and stage?

m2m4   11 posts since
Oct 29, 2009
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1. Nov 2, 2009 7:05 PM in response to: Nigoo
Re: Diagnosed with lymphoblastic lymphoma stage 4 at 13yrs....

I am so sorry for your family. My son was diagnosed woth Nodular Sclerosis Hodgkins Lymphoma Stage 4b last month. He is 10 yrs old. He will be getting 3-5 rounds of chemo and 3-5 rounds of radiation. His progosis is pretty good, over 80% but I am still scared to death. I am here if you ever want to talk.

-Christina

Sue   83 posts since
Apr 4, 2009
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2. Nov 30, 2009 8:55 AM in response to: Nigoo
Re: Diagnosed with lymphoblastic lymphoma stage 4 at 13yrs....

My son was diagnosed with lymphoblastic lymphoma at the age of 20.  He too had cold symptoms and we thought he just had a cold.  His mediastinal mass was the size of a basketball.  He was quickly given CHOP as his mass had obstructed his airway.  He went on to have chemo for a period of 8 months but unfortunately relpased in the CNS (brain).  At that point he required a stem cell transplant which he received in November 2006.  Today he is living a full life with minimal side effects and has been in continued remission since.  I believe that most major cancer centers like to treat this disease with a chemo protocol called Hyper-CVAD as it was designed for this particular disease.  However, due to the aggressiveness of this protocol I'm not sure if someone at 13 is a candidate for it or not.  This disease is often referred to as ALL/leukemia and treated in the same manner.  Because of it's aggressiveness it is not uncommon to present at a stage 4 as my son was as well, but because of it's aggressiveness it tends to respond fairly well to treatment.  I'm sorry I have not responded sooner as I have been fairly busy and have not been on the boards much lately.  If you would like to email me feel free to do so.

 

God Speed,

Sue

HappyPrince   12 posts since
Nov 21, 2009
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3. Dec 7, 2009 11:04 AM in response to: Nigoo
Re: Diagnosed with lymphoblastic lymphoma stage 4 at 13yrs....

sorry to hear about ur niece. She's indeed very young. T-LBL is a very aggressive and rare disease, yet the survival rates are higher and more optimistic for pediatrics as opposed to adults. My brother was also diagnosed with T-LBL at the beginning of this year. Similar symtoms: he started with coughing and pain and x ray showed a large mediastinal mass. He started with Hyper CVAD with excellent response. Yet he relapsed just before he was about to go for autotransplant. So he started on a round of ICE and moved on to auto transplant. Unfortunately, he has a minor relapse within a mth after this transplant and is about to proceed for allogenic transplant. Our family is devastated, sad and heart broken. He is a bright mature young man. However, we found a good match and will remain hopeful. You have to stay positive and be strong for your niece. Family support is critical. I will pray for her recovery.

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