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Medulloblastoma Survivor help

Jasonsmom45
Posts: 3
Joined: Feb 2011

Hi,
I'm writing to see if I can get some information from some of you out there that have survived medulloblatoma or have children that have survived.
My son was 10 years old at diagnosis, had a resection, radiation treatment and 8 rounds of chemo. He was not High Risk.
During treatments and for a time after he received help with occupational therapy, speech, and physical therapy. He lost his hearing, mostly high frequencies, but seemed pretty good after we finished his treatments.
He was put on growth hormones, and testosterone at different times.

In the past year and a half, I have watched as my son seems to me to be 'declining' in his overall health. His hearing seems to be getting worse. He was recently seen by an ENT who wants to do surgery because he has developed a 'hole' in his eardrum that is tearing away from the bone.
Last year he weighed 89 lbs but couldn't seem to maintain that weight. We took him to a nutritionist. Finally after working for several months with him and keeping a record of what he was eating she suggested that we see a doctor because she couldn't account for why he wasn't gaining weight with the amount of calories he was eating. He has complained for years that he has trouble swallowing. Tests showed that he has nerve damage on the left side of his throat. We haven't done the GI test or the colonoscopy.
Recently, my son weighed himself to find he's lost weight again. He now weighs 82 lbs. He's tired all the time. And his speech seems as though it gets slurred more lately. (is this because he's tired?? I don't know)
He is also being seen by a therapist for anxiety and depression issues related to having had cancer. (I've thought many times that maybe that was some of the issue associated with him losing weight) But it also seems like he can go forever without eating. He forgets so much lately. My husband and I have to remind him to do basic things...like when he was young. "Did you brush your teeth" (which he hates because his gums bleed) "Don't forget to shave", "Do you have everything you need" as we are getting ready to leave.
Are these things 'normal' after treatments?? I take him in for regular visits to his regular doctor, and they don't seem to be able to do anything to help him. So I am reaching out to you guys to see what some of you might suggest. Any insight in to what might be going on would be helpful. ( I hope I got everything down to help you guys understand our situation, if I've left stuff out, please ask...My head and heart are so full)
Thank You!
Jennifer

connsteele
Posts: 232
Joined: May 2011

My son was dx with medulloblastoma when he was 8, in 1985. He had some of the same problems your son has: learning disability, very short stature, and problems with organization. Nevertheless he went on to have 26 productive years...had a good job, lived independently untill April 2011, when he was dx with another type of brain tumor.

How old was your son when he was dx? How much time has passed since then? Our son's last NO said that survivorship issues of childhood cancer patients is an emerging field of medicine, but still very lacking. It sounds to me like you are getting the run around from docs who have no experience in this area. I think you need to go to a major cancer research center and find docs who see long term survivors. Was he treated at a children's hospital? Maybe they now have a long term survivor clinic? Also, has anyone mentioned radiation necrosis? Find a doc who knows about this because I think it can be treated.

All the best to you and your son. I know the anguish you feel in watching your son go through this. It is so hard.

Connie
Mother of David
Dx medulloblastoma 1985, age 8
26 years remission
Dx AA3 April 2011
Passes away April 14, 2012

Jasonsmom45
Posts: 3
Joined: Feb 2011

Hi! Thank You for your response. I'm so sorry about your son.
My son Jason was dx when he was 10, he is now 19 years old. He was treated at a Children's Hospital, but they have kind of 'cut us lose' so to speak. He was last seen in a Brain Tumor Clinic in 2010. At that time they were telling us to follow up with a regular doctor because he was going to be turning 18. His Endo doctors did the same thing. I continued to try and find an Endo doctor that could help him now that he's an 'adult'. But the two I have seen only seem concerned to the extent that they want to 'watch and see'. His levels are always low, but still in the 'normal' range.
I have taken him to so many doctors and they all say the same. That 'yes there are problems', but his blood levels are normal so there isn't anything they can do.
I'm just worried about him a lot lately. He just seems so 'out of it'. And I just don't know what to do. =(

KYandell
Posts: 1
Joined: Aug 2012

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

Tiggy65
Posts: 3
Joined: Feb 2013

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.

gsboarder
Posts: 1
Joined: Mar 2013

Hi, I just wanted to add that I am a survivor having been diagnosed with a medulloblastoma when I was 7 in the late 80's.  I don't remember much from that period, only that I had major surgery and I'm uncertain about how long I was in the hospital over that summer.  The only after affects I can recall were a few head aches before and after, but those stopped a long time ago. Although I now have only a limited sense of smell. Being tired sounds normal for any kid, but depression may be a more likely cause.  While I was fortunate enough not to have any significant learning deficiencies (I'm 32 and just completed my 2nd master's degree), I always struggled with personal relationships.  If I didn't have a twin brother growing up, I imagine I wouldn't have had many friends at all.  Even with that I've dealt with several periods where I've felt like relationships were just out of reach, impossible to understand, or just fall apart before I realize something had changed.  I imagine each case will be different, but fitting in is likely an issue.

angelatg
Posts: 4
Joined: Aug 2012

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

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