adult medulla blastoma

13

Comments

  • globia
    globia Member Posts: 9
    #42
    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.
  • Momma Rose
    Momma Rose Member Posts: 1
    #43
    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.
  • steph0steph
    steph0steph Member Posts: 7
    #44
    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.

    ..

    ..
  • steph0steph
    steph0steph Member Posts: 7
    #45
    4theloveofmysis said:

    steph
    We live in Calif. Thank you for the prayers. This is the worst thing ever. My sister doesnt want the family to know, so I feel pretty alone. Our father and our kids know and thats it. So hard Ive dropped out of site from the rest of my family out of respect for my sister. I find my comfort here with the people on this site that know how I feel.

    ..

    ..
  • just4rh
    just4rh Member Posts: 7
    #46
    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
  • just4rh
    just4rh Member Posts: 7
    #47
    steph0steph said:

    Husband with Medullobastoma grade 4 we live in Canada
    Hi I'm looking for anyone that may have info on this or just to talk. We are both 27years old and from Alberta,Canada he has a blog about everything that he has been through @ www.ryanalewis.com but has not posted in it for awhile as he has been very sick lately and today we found out he has meningitis. He has been in palliative care now since May. We have 2 boys 1 and 3 year olds.

    Adult Medullo Patient
    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
  • just4rh
    just4rh Member Posts: 7
    #48
    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
  • just4rh
    just4rh Member Posts: 7
    #49
    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
  • just4rh
    just4rh Member Posts: 7
    #50
    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
  • just4rh
    just4rh Member Posts: 7
    #51
    mabowes11 said:

    Andreakrivera/your post
    I would like to hear more from you, my husband was diagnosed with a rare stage 4 medulloblatoma non operable, just finished 7 weeks of radiation, will start chemo in a few weeks. Really trying to find someone that has had the same diagnosis or similar. His Dr's at UCSF said they have never seen this in adults. On this site it seems to be more common than I realized or it may be that his type is in different rareity? Not sure?? Would love to hear from you. Hope things continue to get better for you good luck.
    Clarece

    My name is Duane, and I had
    My name is Duane, and I had a medullablastoma removed sept 20, 2010 at the age of 51.
    If you would like to talk, please feel free to call me.

    Best Regards,
    Duane
    480-56-6787
  • beaudog
    beaudog Member Posts: 3
    #52
    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
    beaudog Member Posts: 3
    #53
    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

  • angelatg
    angelatg Member Posts: 4
    #54
    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.

     

  • angelatg
    angelatg Member Posts: 4
    #55
    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.

     

  • globia
    globia Member Posts: 9
    #56
    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

  • MaryCD
    MaryCD Member Posts: 2
    #57
    Severe cancer related fatigue related to medulloblastoma

    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)

  • mjbj23
    mjbj23 Member Posts: 1
    #58
    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.

  • krissatish87
    krissatish87 Member Posts: 1
    #59
    I hope all of you/your loved

    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. 

  • Josey
    Josey Member Posts: 3
    #60
    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?

  • Josey
    Josey Member Posts: 3
    #61
    andreakrivera said:

    I am a survivor of
    I am a survivor of medullablastoma. I was diagnosed at 22 and I am currently 24. I was diagnosed 7/4/07 and had my surgery on 7/7/07. I have had chemo and radiation. I would like to talk to someone.

    Also a survivor

    hi my name is Josey diagnosed 1998 at ade 17.  currently dealing with issues from radiation treatment.  Wanna chat?

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