Primary Central Nervous System Lymphoma

tntg

My son is 10 years old and he has Primary CNS Lymphoma he was diagnosed in April of 2010.
I would love to talk to anyone who's child has the same type. There is very little info availible on children that were in perfect health prior to getting sick. He has finished his protocal and we are getting ready to do our second MRI. If anyone has a child with this and would like to communicate with me please respond.

subito

CNSL and kids
Here's an article by the biggest CNSL doctors around. Not sure if it gives any information you don't already know.
http://clincancerres.aacrjournals.org/content/early/2011/01/07/1078-0432.CCR-10-1161.abstract

My husband had it, but he got in his 50s.

Looks like the prognosis is good for kids. Fingers are crossed for you!!!

Ruth

Michbrwn

How is your son doing these days?

I'm the mom of 14 yo teenager diagnosed May 24, 2013 with large B-cell primary CNSlymphoma. After reading this thread, I can better appreciate the what-felt-like-long-time between his May 14th initial admission for a 2nd MRI to the craniotomy 1 week later on May 21st to the pathologist analyzing the tissue, then phone call on May 24th to start high dose steroids, chemo, chest port placement & by the way, we have to go back in 1 wk after the craniotomy to put an Ommaya reservoir into his skull, so he can get chemo directly into his cerebrospinal fluid (rather than a lumbar puncture every 2 days while inpatient for the chemo rounds). I remember the tumor specialist saying that they couldn't just treat it with steroids because they needed to confirm without doubt what was being treated because if it was Germ cell type, that the treatment would be significantly different. I remember Sat, May 11th, the day before Mother's Day, him saying "Mom, this eye twitching is really bothering me" after he returned from playing in an 8 am travel soccer league game. I looked in his eyes & saw the nystagmus, or involuntary eye twitching when he would look to extremes of down & left. I remember the urgent visit later that morning with the pediatrician offering a stat MRI at a local hospital to be scheduled for Monday or to go directly to the ER - of course, my 13 yo would choose the 1st (who would want to wait in the ER for eye twitching?)! It WAS SO bad for him between the craniotomy through the 1st round (so many unknowns on how he would do) until he got to go home on his 14th birthday June 4th, but he's doing SO well tolerating his 2nd round & this 3rd round (we're here admitted right now for 6 days) without nauseau nor vomiting - Praise God! He's gone swimming at local lakes & pools between chemo & leans on The Lord for His strength. I'm still praying that he continues to do well, but I'm appreciating ALL of the wisdom in your posts. 

His blood count numbers have been awesome so he's had a thumbs up on the lakes - pools - Cedar Point Amusement Park! I couldn't believe the Cedar Point one when he proposed that one to them - they said that it was mainly dependent on his platelet count so that he doesn't bruise from the roller coaster belts/things that strap you in & of course, his ANC or neutrophil count to confirm he's not neutropenic.  I've been absolutely amazed at his blood count numbers & the ability of his body to bounce back & all I can do is pray that it keeps going. He missed his 8th grade Chicago trip that he was SOO looking forward to, and with the docs not cutting off his idea of a Cedar Point trip, I guess I will support him if he can. I can't tolerate those rides - we will see. His case is one of 14 cases worldwide we've been told by UM Mott Hospital because of his age & it being large B-cell in the brain only. Do all of you having this same diagnosis have Ommaya Reservoirs, too? Those chemo infusions are the only ones that make him slightly nauseous (despite the Zofran), but he sleeps immediately after it's done, then he's back to eating & moving around normally.

chg44

Michbrwn said:

How is your son doing these days?

I'm the mom of 14 yo teenager diagnosed May 24, 2013 with large B-cell primary CNSlymphoma. After reading this thread, I can better appreciate the what-felt-like-long-time between his May 14th initial admission for a 2nd MRI to the craniotomy 1 week later on May 21st to the pathologist analyzing the tissue, then phone call on May 24th to start high dose steroids, chemo, chest port placement & by the way, we have to go back in 1 wk after the craniotomy to put an Ommaya reservoir into his skull, so he can get chemo directly into his cerebrospinal fluid (rather than a lumbar puncture every 2 days while inpatient for the chemo rounds). I remember the tumor specialist saying that they couldn't just treat it with steroids because they needed to confirm without doubt what was being treated because if it was Germ cell type, that the treatment would be significantly different. I remember Sat, May 11th, the day before Mother's Day, him saying "Mom, this eye twitching is really bothering me" after he returned from playing in an 8 am travel soccer league game. I looked in his eyes & saw the nystagmus, or involuntary eye twitching when he would look to extremes of down & left. I remember the urgent visit later that morning with the pediatrician offering a stat MRI at a local hospital to be scheduled for Monday or to go directly to the ER - of course, my 13 yo would choose the 1st (who would want to wait in the ER for eye twitching?)! It WAS SO bad for him between the craniotomy through the 1st round (so many unknowns on how he would do) until he got to go home on his 14th birthday June 4th, but he's doing SO well tolerating his 2nd round & this 3rd round (we're here admitted right now for 6 days) without nauseau nor vomiting - Praise God! He's gone swimming at local lakes & pools between chemo & leans on The Lord for His strength. I'm still praying that he continues to do well, but I'm appreciating ALL of the wisdom in your posts. 

His blood count numbers have been awesome so he's had a thumbs up on the lakes - pools - Cedar Point Amusement Park! I couldn't believe the Cedar Point one when he proposed that one to them - they said that it was mainly dependent on his platelet count so that he doesn't bruise from the roller coaster belts/things that strap you in & of course, his ANC or neutrophil count to confirm he's not neutropenic.  I've been absolutely amazed at his blood count numbers & the ability of his body to bounce back & all I can do is pray that it keeps going. He missed his 8th grade Chicago trip that he was SOO looking forward to, and with the docs not cutting off his idea of a Cedar Point trip, I guess I will support him if he can. I can't tolerate those rides - we will see. His case is one of 14 cases worldwide we've been told by UM Mott Hospital because of his age & it being large B-cell in the brain only. Do all of you having this same diagnosis have Ommaya Reservoirs, too? Those chemo infusions are the only ones that make him slightly nauseous (despite the Zofran), but he sleeps immediately after it's done, then he's back to eating & moving around normally.

amazing son:)

I was begining to think that we were the only ones. I am so happy to hear that your son is so well ! God Bless him and all of your family. My son is now 14 years old I wrote that when he was 9 or maybe 10 . But until this I havent found a single response. I would really like to find out some of your son's hurtles that have come with his journey.  My son is doing fablous I thank God for every second. My son's name is Chance. To answer some questions he had a broviac cathader inserted into his chest for his protocol in was mainly methatrexate and yes my son had the reaction as yours with his chemo treatments. Please respond I would love to learn more about your son-God Bless