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adult medulla blastoma

Riverland01
Posts: 1
Joined: Sep 2007

I am interested in making contact with any adult that has been diagnosed with madulla blastoma or caregiver who is connected with someone who is going through this disorder

globia
Posts: 9
Joined: Jan 2009

Where in CA do you live? My thoughts and prayers are with you and your sister.

Gloria

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

We live in the bay area northern Ca.

globia
Posts: 9
Joined: Jan 2009

Thanks,

I was hoping you were closer so we could meet.

globia
Posts: 9
Joined: Jan 2009

Steph, my heart goes out to you and your sweet boys. I wish I could give you a great big hug. If you ever want to talk I'm here. Cell #805-660-0439.

Gloria

just4rh
Posts: 7
Joined: Mar 2011

Hello
My Name is Duane and I am a 52 yr old who was diagnosed Sept 20, 2010.
18 Months post-op left cerebellar resection for medulloblastoma.
I was treated at Barrows Neuro in Phoenix, AZ. Subsequent 30 IMRT treatments
of the posteria fossa only.
I hope your husband is doing well.
My number is 480 556 6787

Best Regards,
Duane

Momma Rose
Posts: 1
Joined: Sep 2011

I am a 31 year old female survivor of adult medulla blastoma, is there anyone out there that has had the same? just looking to speak to someone about their experiences with this.

mjbj23
Posts: 1
Joined: Nov 2016

Hi my name is Michael.

I'm a Medullo Blastoma survivor.

I was diagnosed at eight years old, and I'm a Medullo Blastoma survivor of 27 years.

just4rh
Posts: 7
Joined: Mar 2011

At the age of 51 I had my tumor fully resected Sept 20, 2010 and had 6 weeks of posteria fossa radiation. (No spinal)
I have residual balance and dizziness issues, and annualy spinal/cranial MRIs.
So far I am still an M-0. Some coordination issues (on the side of my surgery) and some arthritis issues. Feel free to contact me to discuss further.

Best Regards,
Duane

beaudog
Posts: 3
Joined: Jan 2013

My brother had a medullablastoma removed in 1983 st the sge of 27. Following surgery he had full brain and spinal cord radiation.

At age of 48 he developed anterior horn cell degeneration, essentially radiaton necrosis. He is quite disabled: cannot walk without support, muscle wasting, speech and swallowing problems, cannot move his eyes, ect.

Anyone else have this problem. Would like to share treatments for symptom management.

Mary

globia
Posts: 9
Joined: Jan 2009

My husband Kevin diagnosed Feb 2004 with mb, tumor completely resected, radiation to brain and spine. He had another tumor develop in his spine which was discovered Dec 2010, could not remove tumor due to involvement with nerves. He was using a walker up until his high dose chemo with stem cell replacement Nov 2011. Kevin had a foley cath (because he was completely incontinent) so for the two months he was in the hopsital he hardly ever got out of bed and didn't walk at all. he had complcations & got fluid in his lungs and couldn't breath about 3 weeks into the treatment and was rushed to ICU. He was intubated, then went went into AFIB, they shocked his heart 5x to bring him out of it...almost lost his life but he pulled out of it. He spent 2 weeks in ICU. All of this left him in a very weakended state, he spent 2 months at UCLA and 1 month at inpatient rehab, had to get a g-tube because he couldn't eat due to a swallowing disorder. This slowly got better over time along with the help of a speech therapist (they also deal with swallow disorders). He is in a wheel chair most of the time but can climb the stairs (with rails) which keeps him strong and he uses a walker upstairs. About 6 weeks ago, Kevin's left eye started getting stuck looking left while the other could move and focus. After seeing two opthomologists who said they could do nothing for him, I took him to UCLA to see a neuroopthalmologist. He was helpful and gave a name for this (he said, rare) condition (don't recall the name). Basically, late onset nerve damage from the radiation in 2004. But the good news is he recommended Kevin see a neurologist to prescribe an anti-seisure medication which hleps calm the overactive nerves. Ever since he started taking the medicaiton (Carbamazopine ER 200mg) he hasn't his eye is better (hasn't got "stuck" at all since and he's been on the drug for about 3 weeks). The only down side is he said his balance feels worse. I'm not sure if this would work for your brother but perhaps he could see a neuroophalmoogit and/or a neuologist. My heart goes out to you and your brother. Stay strong and take it all one day at a time. Also I got help for Kevin by persistence. Explore other avenues when you hit a dead end. You may find some answers. Gloria

beaudog
Posts: 3
Joined: Jan 2013

My brother had a medullablastoma removed in 1983 st the sge of 27. Following surgery he had full brain and spinal cord radiation.

At age of 48 he developed anterior horn cell degeneration, essentially radiaton necrosis. He is quite disabled: cannot walk without support, muscle wasting, speech and swallowing problems, cannot move his eyes, ect.

Anyone else have this problem. Would like to share treatments for symptom management.

Mary

angelatg
Posts: 4
Joined: Aug 2012

My mother was diagnosed with medullablastoma in March 1990.  She had surgery to remove the tumor and took WBRT for 8 weeks.  She is alive today but lives with many deficits.  She has progressed dementia along with many other issues.  Thank you all for your posts.  They are so helpful to read about others in our situation.

 

angelatg
Posts: 4
Joined: Aug 2012

My mother was diagnosed with medullablastoma in March 1990.  She had surgery to remove the tumor and took WBRT for 8 weeks.  She is alive today but lives with many deficits.  She has progressed dementia along with many other issues.  Thank you all for your posts.  They are so helpful to read about others in our situation.

 

MaryCD
Posts: 2
Joined: Sep 2016

My husband was diagnosed in June 2014 with medulloblastoma (he was 36), and had a partial resection of tumor.  He had numerous tumors in his spine (also medulloblastoma)  He had 30 sessions of radiation as well as 6 rounds of chemo (cisplatin and etoposide).  We are 2 years out and the scans are coming back stable (and the tumors in spine have disappeared).

Despite the good tumor news, his quality of life is almost nil.  It could be because the doctors left him on dexamethasone for 2 years (we believe it was accidently, they just neglected to ever tell him to stop taking it). He now is trying to taper, but it's been proving very difficult to go below 1.25mg per day. Everytime he tries his fatigue is so bad he can hardly stand.  It's pretty awful.  If anyone has experience with severe fatigue this far out please get in touch.  

Thanks!

Mary (Washington DC)

krissatish87
Posts: 1
Joined: Apr 2018

I hope all of you/your loved ones are doing great. My brother (33) was diagnosed with MB recently. He had full resection of the tumor and his Spine MRI is clear. He is pretty fit and fine post surgery. His symptoms were neck pain and slurred speech which vanished  post surgery. He is now ready for 6 weeks of Radiation.

Can anyone confim if chemotherapy required?

 

Need all your prayers and support. 

mlbeverlin
Posts: 3
Joined: Jul 2018

My son was diagnosed just before his 16th birthday.  He was on thhe COG 0331 protocol.  He hust finished his last chemo cycle and has MRIs next week.  I have always understood chemo to be necesary to kill off any remaning cells.  My son had a total resection and it had not spread.

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