Medulloblastoma Survivor help

KYandell said:

My son Jason
Can anyone share with me the chemo that was given. My son Jason, has had three rounds of the packer chemo and now has a reoccurrance. We have been given options of chemo to take by the oncologists we have seen, but they are really not being helpful with any answers. His onset was Jan 2007 (age 21) with surgery, radiation, then packer chemo. One small tumor only returned in Feb 2011 which was surgically removed, focal radiation then two rounds of packer chemo. He was clear until a few weeks ago with it returning to spine and base of his brain. We thought he had beat this. I will say, I read on one of the stories on here about their doctor only doing the brain MRI and I can relate. We had been with an oncologist that put us over to her associate who continued to do full brain and spine. Our visit in April she had put us to another of her new associates that only ordered brain. My sons original tumor started in his spine. The MRI on 8/1/2012 was full and showed the original spine tumor reoccurred. I had questioned in April why only the brain and not full as had always been done. It was no comfort to have the oncologist pat me on the knee and say...you called that one, we should have done a full one last time. Now it has spread to what they are calling a "coating" up and down the spine and base of the brain. Which means it is not operable. Had it been caught early, it is possible surgery would have been an option without it spreading. Now we are only being told to try chemo and see if it works. The research I have done on the types they are suggesting show none are for medullablastoma. We are being told that he can not take anymore radiation and it is not operable due to its spreading versus a tumor like stage. And that chemo has stopped working so lets just try different ones and hopefully something will work. I will be glad to share with anyone our experience with St. Judes and MD Anderson. If anyone on here has a doctor that totally specializes in Medullablastoma only please share that with me.

Karen
my number is 817-680-0045 if anyone would like to talk.....please call

I just read this thread due to trying to find any forums out there for parents of survivors with MB for various reasons.  My issues are not even close to any urgency of what the two of you are going through.  My son is now 19, he was diagnosed at the age of 5.  I would be happy to talk to both of you but I feel I am months behind on this thread.  As for you KYandell, if you are still needing help and answers, I can supply you with a solution.  I just need you to let me know if I am still able to call you this many months later.  My heart goes out to all three of you with much love and wishes you the upmost strength as a mother.

I am writing to add to this thread.  My mother was diagnosed with MB in her cerebellum at the age of 42.  It was rare that she would be diagnosed with a pediatric brain tumor at her age.  She had surgery to remove the tumor and took 8 weeks of whole brain radiation treatment.  Her surgery was in 1990 at Duke University.  She was a miracle for a number of years, but like many of the previous threads she had hearing loss, damage to her eyes, balance issues from the scar tissue in her cerebellum, and a number of other issues mainly all due to the whole brain radiation and the radiation to her spine.  My mother lived for 24 years after her initial diagnosis.  However, my mother's memory was never quite the same. She began with short term memory loss to eventually having dementia/alzheimers from the damage to her brain from radiation.  I lost my mother 4 weeks ago after watching her decline to being bedridden and not knowing any of our family.  I am thankful for the years that we had with my mother after her original diagnosis.  She lived to see my brother and I both graduate college, get married and have her grandchildren.  I pray for anyone who has to endure the pain of watching a loved one go through what my family did with my mother.  I am also curious about the number of people that are survivors of MB and the ages of survivors.  I have been told through the years that my mother was a walking miracle to have not only survived the surgery and radation for MB, but also to live for 24 years after her diagnosis.  If anyone on this thread would like to reach me for any questions or to talk - my email is angelatgodwin@gmail.com.  I have read and researched a lot about MB from the day my mother was diagnosed until the day she passed.  I will continue for the rest of my life to learn as much as I can about her illness. 

Prayers to you all who are fighting this battle or have a loved one fighting!!

Angela

Hi i have been a survivor of medulloblastoma going on 11 years I am glad to know that im not alone.

I have been searching for mother's of children with Medulloblastoma as my 15 yr old son was diagonsed Aug/2017; he's completed 1 year of chemo 5 months to go. He is having a rough time as lost so much weight 98;bs, cachexia they call it: inability to thrive.  What a horrible lable to give a child.  The feeding tube is barely giving him any nutrition as he cant keep it down, sores in his mouth, depression is starting.  I am crazed with anger and feel helpless.  I am not the same person i was  and I feel like I'm losing my grip.  I dont even want to think of him leaving me, I try to prepare myself just in case It becomes reality but I fear that It may manifest if i keep that up. I try to make myself believe that he is strong and will beat it, My son believes it so then it will be!!!  That's all i got.  I see this was posted in 2012, so I pray that you are o,k and the outcome is good.  Most of these stories are 5 years old or more and it makes me feel like there is no survivors.  I desperatley feel like you did, just want to hear something good.  Would like to hear from you <content updated by CSN Support Team>

mlbeverlin said:

Just finished treatment

My son was diagnosed May 2, 2017.  He just finishe his last chem on July 6, 2018.  He also lost weight but not as much.  He did not need a feeding tube.  He was put on Periactin twice daily to increase appetite, and also on Zyprexa for vomiting and appetite.  It seems to have helped.  He is on COG 0331.  What treatment plan is your son on?

my son was not  on any treatment plan, only the harsh chemos and radiation, any mention of anything good put the oncology team in defense mode

How is your son doing??

I think my daughter's head pain in the years following surgery could be from too much fluid on the brain (high pressure).  She was not given a shunt during surgery since MRI did not detect excess brain fluid.  Struggling to find a doctor that knows about this stuff.  Wondering if other surgery patients were given a shunt?  Her tumor was about the size of a golf ball.  90% was removed.  

She is experiencing all the late effects that have been reported here.  Balance issues, memory issues, hearing and vision issues....the list is almost endless.