adult medulla blastoma

4theloveofmysis said:

Globia
We live in the bay area northern Ca.

Thanks,
I was hoping you
Thanks,

I was hoping you were closer so we could meet.

BabsOregon said:

Your posts
Steph,
I read your posts over the past few days. I am so sorry that your beautiful young family is going through this horror. I live in Oregon and found out exactly two months ago that my 46 year old husband has inoperable GBM. He has been going through radiation and chemo, including one Avastin treatment, but he has had several set-backs and it isn't clear that he will be able to continue the treatments on schedule.
We don't have any children together and my only child, a 24 year-old daughter, has been a tremendous help to us. I remember so well how much strength it took to be the mother of a toddler and wonder how you are holding up. I hope you have lots of support - even with that, I am sure that your are pretty tapped out.
I will continue to watch for your posts and try to be responsive. Take care.

..

..

Adult Medulla Blastoma
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

positivesisterone said:

good news?
My brother was Just diagnosed at age thirty of this type of cancer. Had the tumor removed five days ago. Waiting to hear what stage etc. its at. Can you give me any hope?

checking on your brother
Hello,
My name is Duane, and I had a medullablastoma removed sept 20, 2010 at the age of 51.
Just checking to see how your brother is doing 2 yeras post-op.

Best Regards,
Duane
480-56-6787

globia said:

My husband is a 5-year survivor of medulablastoma
My husband is a 5-year survivor of medulablastoma. Please feel free to contact me.

Checking on Kevin
Hi Gloria,
It's Duane from Scottsdale. I am now 2 yrs post-op with some residual vertigo and balance issues. Still have a bit of chronic fatigue as well.
How is Kevin doing?
Best Regards,
Duane
480-556-6787

Post medullablastoma radiation necrosis mimicking ALS

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

beaudog said:

Post medullablastoma radiation necrosis mimicking ALS

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

adult medullablastoma

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.

 

beaudog said:

Post medullablastoma radiation necrosis mimicking ALS

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

eye issues

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

Momma Rose said:

I am a survivor of adult
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.

I'm a pediatric survivor of a Medullo Blastoma

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.

Kerrin said:

what to expect
I was also diagnosed with a medullablastoma at 16 here in the UK. At 38 I am still going stong, am married, 2 kids, working etc. I hope that gives you some hope. I had surgery and radiotherapy but treatment now is so different to what it was in 1986 and I wouldn't want to generalise; as I am sure that you are also rapidly finding out that no brain tumor seems to be alike in terms of the effect, but I got back to school pretty quickly after I had been ill and life has been pretty much normal since then.

16 is a difficult age to become completely dependent again and I think that psycologically this has had a effect on some of the decisions I've taken since - nothing major, just something I've noticed. Physically I am fine - my teeth are not particularly good which might be an effect of the radiotherapy or possibly a love of chocolate! My neck gets a bit sore from time to time.

Hello Kerrin

hi my name is josey.  I live in the us.  Diagnosed at 17, currently 37.  2 beautiful healthy babies.  Have you experienced any issues with vision or hearing loss?