adult medulla blastoma

Riverland01
Riverland01 Member Posts: 1
edited March 2014 in Brain Cancer #1
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
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  • Your CSN Support Team
    Your CSN Support Team Member Posts: 199
    Dear Riverland01,

    The easiest way to locate other members with similar experiences is to type keywords (such as "medulla blastoma," "brain cancer," etc.) on the search bar at the top of the home page. You can refine your search by clicking on the different categories of content listed below the list of keyword matches that you get from your search. The major categories of content on CSN are discussion boards, personal web pages, etc. For example, if you are looking for a personal web page, you can limit your search to personal web pages only by clicking on the "personal web pages" category. Remember that you must be logged in if you want to post anything on a discussion boards, view personal web pages, use the chat room, etc.

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  • gary142
    gary142 Member Posts: 1
    hi
    i am a 27 year old male. was diagnosed with medulloblastoma when i was 20. give me a shout if you fancy a chat or e-mail me at [email protected]
  • globia
    globia Member Posts: 9
    My husband is a 5-year survivor of medulablastoma
    My husband is a 5-year survivor of medulablastoma. Please feel free to contact me.
  • rhe
    rhe Member Posts: 1
    gary142 said:

    hi
    i am a 27 year old male. was diagnosed with medulloblastoma when i was 20. give me a shout if you fancy a chat or e-mail me at [email protected]

    what to expect
    hi, my son is 16 and had a brain tumor that was removed and the doctors said it was medullablastoma. he just had his first week of proton radiation and his first chemo treatment. i was wanting to talk to someone about what to expect and how to care for him or how to make it a little easier for him. any information would be helpful. very glad to hear (gary) it has been 7 years and you are doing good.
  • andreakrivera
    andreakrivera Member Posts: 4
    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.
  • laurarose
    laurarose Member Posts: 4
    gary142 said:

    hi
    i am a 27 year old male. was diagnosed with medulloblastoma when i was 20. give me a shout if you fancy a chat or e-mail me at [email protected]

    My 17 yr old sister found
    My 17 yr old sister found out tow days ago she had a tumor and had it removed yesterday. It is a medulloblastoma. any help you can offer would be great. WE are all gonna need it.
    Laura
  • Kerrin
    Kerrin Member Posts: 1
    rhe said:

    what to expect
    hi, my son is 16 and had a brain tumor that was removed and the doctors said it was medullablastoma. he just had his first week of proton radiation and his first chemo treatment. i was wanting to talk to someone about what to expect and how to care for him or how to make it a little easier for him. any information would be helpful. very glad to hear (gary) it has been 7 years and you are doing good.

    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.
  • lopezalise@yahoo.com
    [email protected] Member Posts: 5
    how are you doing now? when
    how are you doing now? when was your surgery? did you have chemo? I have so many questions on behalf of my nephew who just had surgey may 29,that same day was his 27th birthday. he is engaged to be married on june 27th , of course that date is out of the question now. our family is in shock. any conversation with someone who has similar experience would be so mush appreciated. Alise
  • cartier
    cartier Member Posts: 1

    how are you doing now? when
    how are you doing now? when was your surgery? did you have chemo? I have so many questions on behalf of my nephew who just had surgey may 29,that same day was his 27th birthday. he is engaged to be married on june 27th , of course that date is out of the question now. our family is in shock. any conversation with someone who has similar experience would be so mush appreciated. Alise

    In 1994 I was diagnosed with
    In 1994 I was diagnosed with this brain tumor and thank God am still enjoying life. I had surgery and a month and a half of radiation treatments. It was a scary experience but one that can be overcome. I pray and wish your nephew the best, if you need to talk I am willing... Bill
  • lopezalise@yahoo.com
    [email protected] Member Posts: 5
    cartier said:

    In 1994 I was diagnosed with
    In 1994 I was diagnosed with this brain tumor and thank God am still enjoying life. I had surgery and a month and a half of radiation treatments. It was a scary experience but one that can be overcome. I pray and wish your nephew the best, if you need to talk I am willing... Bill

    medullablastoma
    Bill, Hello, and thank you for responding. I'm inspired a bit already. please share your story if you dont mind. Our family is just getting started here arming ourselves with info/ammo to help our guy fight this monsterous tumor.Thanx, Alise
  • lopezalise@yahoo.com
    [email protected] Member Posts: 5
    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.

    medullablastoma
    my nephew Ricky, age 27 had his surgery on May 29 and we were told they got all or most of it out. However, he is still in a semi-coma state. due i assume to the many complications he has suffered post-op bloodclot(now dissolved) hydrocephalus and bacterial meningitis. did your huuby experience any of these complcations post op? I am starting to worry about the quality of care Ricky is getting at Kaiser hospital in Calif. can you share your experience ? thankyou and god bless. Alise
  • lopezalise@yahoo.com
    [email protected] Member Posts: 5
    gary142 said:

    hi
    i am a 27 year old male. was diagnosed with medulloblastoma when i was 20. give me a shout if you fancy a chat or e-mail me at [email protected]

    my nephew just had
    my nephew just had crainiotomy on may 29 but hes still in a semi coma did you experience this? Alise
  • kristy1
    kristy1 Member Posts: 2

    my nephew just had
    my nephew just had crainiotomy on may 29 but hes still in a semi coma did you experience this? Alise

    my son had the same surgery
    my son had the same surgery and was in a induced coma for 9 days
  • kristy1
    kristy1 Member Posts: 2
    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.

    medulablatoma
    my son is 20 and has done radiation and is now doing chemo/he was diag in 12-08 and has been in treatment since then/he seems to be doing very well/i am very interested in hearing more about your husbands life (tratments)

    KQ
  • BrianBarklage
    BrianBarklage Member Posts: 3

    medullablastoma
    my nephew Ricky, age 27 had his surgery on May 29 and we were told they got all or most of it out. However, he is still in a semi-coma state. due i assume to the many complications he has suffered post-op bloodclot(now dissolved) hydrocephalus and bacterial meningitis. did your huuby experience any of these complcations post op? I am starting to worry about the quality of care Ricky is getting at Kaiser hospital in Calif. can you share your experience ? thankyou and god bless. Alise

    medullablastoma
    Hi Alise. I was reading your story and wondering how your nephew is doing? My brother-in-law Brian was recently diagnosed in June 08. He had surgeries and chemo/radiation. Two weeks ago they found another tumor on his brain stem and the other tumor has only grown. He too is at Kaiser hospital in CA. They are trying a weaker chemo since the aggresive chemo didn't work. They are saying it is unlikely that this will work. Brian was told by these drs. that surgery wasn't an option. He is at home now paralyzed on his left side and continues to deteriate. Is your nephew still at Kaiser? We are thinking about getting him yet another opinion.
    Thank you and god bless you and your family. Stacey
  • BrianBarklage
    BrianBarklage Member Posts: 3
    gary142 said:

    hi
    i am a 27 year old male. was diagnosed with medulloblastoma when i was 20. give me a shout if you fancy a chat or e-mail me at [email protected]

    medullablastoma
    HI Gary,
    Thank you for sharing your story. My brother-in-law Brian is stage 4 with a new tumor on his brain stem. Drs give little hope. Wondering if you had surgery and chemo/radiation. Where did you recieve your treaments? Thank you for any information you can share. We are still fighting to get Brian the best care. Stacey
  • laurarose
    laurarose Member Posts: 4
    laurarose said:

    My 17 yr old sister found
    My 17 yr old sister found out tow days ago she had a tumor and had it removed yesterday. It is a medulloblastoma. any help you can offer would be great. WE are all gonna need it.
    Laura

    Kristine has had surgury, chemo, radiation and now more chemo within a clinical study. She is losing her eyesight exactly 1 week after each treatment and there is damage to her retina. if she continues treatment she could be permanatly blind, if not the cancer could come back.
    Any comments or ideas?
  • maguire30
    maguire30 Member Posts: 1
    cartier said:

    In 1994 I was diagnosed with
    In 1994 I was diagnosed with this brain tumor and thank God am still enjoying life. I had surgery and a month and a half of radiation treatments. It was a scary experience but one that can be overcome. I pray and wish your nephew the best, if you need to talk I am willing... Bill

    Medullablastoma??
    Hi Bill. I've just read your comment and think its fantastice you have survived your ordeal. Was you tumor a grade 4 medullablastoma? My brother was diagnosed with this a year ago and is doing good. he went through his chemo and radio which was very sore on him and he is in the middle of a rehabilitation programme now so hope fully he will bre back on his feet after this and has a long and healthy life he is only a baby at 25. What age where u when you were diagnosed. hope you don't mind these questions. An Cara..
  • hope4787
    hope4787 Member Posts: 1
    hi my mother was diagnosed
    hi my mother was diagnosed with this type of tumor in nov 2005. my parents are divorced and i was her primary care giver. she is now finished with radiation and chemo treatments and all of her mris are coming back clear. let me know if i can help you in some way.
  • momray
    momray Member Posts: 3
    rhe said:

    what to expect
    hi, my son is 16 and had a brain tumor that was removed and the doctors said it was medullablastoma. he just had his first week of proton radiation and his first chemo treatment. i was wanting to talk to someone about what to expect and how to care for him or how to make it a little easier for him. any information would be helpful. very glad to hear (gary) it has been 7 years and you are doing good.

    Hi! Some club we belong to!
    Hi! Some club we belong to! My 15 year old daughter just finished her 15 month long treatment for medulloblastoma. By the date of your posting, I am assuming that your son has finished the radiation and is on to the heavy duty chemo? How was proton radiation for him? My sweet Rebecca began vomiting 2 hours after the first radiation and didn't stop until it was over. Her doctor still insists that the radiation probably didn't cause it, so I am curious how it went with you.

    You could probably get more info from talking with Rebecca instead of me. I haven't learned yet what I did that helped vs. what made things worse, from her perspective. I do know that I had a hard time letting her do things for herself. She was so sick that I had the tendency to overdo the helping.

    A little advice for yourself? If you are like me, you are more used to helping others than receiving help yourself. That was a hard thing for me to do. But I can say with all truthfulness that I would have had a much harder time the past long months without the help of others. There were so many times that I just didn't have the words to pray, but I knew that so many other friends, as well as strangers, were praying for Rebecca. All the meals and errands that others ran for me were so hard to accept at first, until I realized that it actually blessed them, also. There were a few times that Rebecca actually called one of my friends to pick me up for coffee. She was much wiser than I was and could see that no matter how much I loved her, the short break was good for both of us. Try not to feel guilty about taking a few minutes for yourself.

    Please feel free to ask me any specifics that might be helpful. I don't know your name, but God does and I WILL be praying for you.
    Sondra