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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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 firstname.lastname@example.org
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.
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.
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.
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.
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?
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 and was in a induced coma for 9 days
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
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?
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.
My husband is a 5-year survivor of medulablastoma. Please feel free to contact me.
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
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
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)
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?
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.
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.
Hello, my husband had medulloblastoma in 2004 at that time I was searching for other adult medulloblastoma survivors and came across a man who's wife had just been treated at UCSF. They lived in Washington State and traveled to San Francisco for treatement after doing some research. They found an article that was published on Medulloblastoma in which Dr. Larson was one of the doctors that wrote the article (Medline Search). Also, my husband's radiologist in Ventura just last week said that he knows Dr. Larson well. You may want to check into this.
Here is my husband's background as of 15Jan2011:
He had surgery in Feb 2004 to remove a tumor the size of a golf ball in his cerebellum. Stage IV Medulloblastoma. The doctor (Ventura CA) was able to remove the entire tumor but he was left with some slight handicaps (balance problems and left side uncoordinated). Just before having 36 sessions of IMRT radiation to his brain and spine he had a PET scan and a spinal tap to test the fluids in his spine. They did not detect any cancer cells. They were considering whether to do radiation and chemo or just radiation and decided that the chemo was probably not necessary. He had been getting regular repeat brain MRIs since the original surgery and we thought he was cancer free. Kevin started having bladder issues about 1-1/2 years ago and his urologists (3 different ones) thought it was due to radiation damage. Recently (about 3 months ago) he started having numbness in his butt and bottom of his feet so he went to his neurosurgeon. The neorosurgeon ordered a series of MRIs to his spine and found in December that he had a large tumor inside his spine at the bottom (L4-S2). This was the cause of his urinary problems (bladder retention, incontinence and OAB). This is the first series of MRIs to the spine...the rest were all done on his brain previously. He had surgery on December 31st to attempt to remove the tumor. The doctor could not get much of the tumor at all because of the intense nerve involvement so he took some samples and closed him back up. He has Stage IV Medulloblastoma again. They suspect that cancer cells slipped down his spine before the brain tumor was removed and that they were probably dormant until a few years ago and so small in 2004 that they were undetectable. He is recovering well but is facing an uncertain regimine of Chemo and some sort of radiation. He has to get a PET scan first to see if any cancer has spread. I believe that if Kevin had been having MRIs of his spine all along they would have detected the cancer when it was easily treated. I hope that your husband is doing well. Do you have any details on what type of Chemo and what type of radiation your husband went through? How are you holding up? It is a tough road as a caregiver, I've been through it once and now facing it again. You need to find some time for yourself.
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.
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 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
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
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..
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.
Hi, my name is Everett and in May 2010 my wife was diagnosed with Medulla Blastoma.We went to
UCSF to remove the tumor. She has been thru Radiation and is going thru chemo. It would be nice to actully talk to some one that has been thru what we are going thru. My wife and I have been married 27 years ans we have a 10 year old son.I need some advice and may be a little boost of confedence.
Hi my name is Clarece, my husband was diagnosed April 17th 2010 with stage 4 non operable medulloblastoma, 3 tumors, has just completed 7 weeks of full brain and spine and also targeted radiation, will be starting chemo in a few weeks. We are just trying to find out as much as we can on this he is treated at UCSF and we were told they had never seen anything like what he has so it has been difficult to find someone to compare with. If you have any questions for us feel free to ask. Hope things are moving along in a good positive direction for you. (This was initally in response to Riverland o1 post)
I'm so sorry to hear about your husband. I'm in a very similar situation as you are. My husband was diagnosed with medulloblastoma in June of 2010 and since that time spent over 45 days hospitalized. He did undergo surgery and they were able to remove the tumor. He is now going through intense chemotherapy and will have radiation treatment soon after he is finished with that.
I'm interested to hear about what your husbands symtoms were before being diagnosed. My husband was vomiting for 7 weeks straight, lost a lot of his coordination- had a very difficult time walking straight and slept for many hours each day. Finally, after having visited numerous emergency rooms, they did a CT scan and found a golf ball size tumor on his cerebellum.
He has had a very difficult time trying to recover form the surgery and has been weakened even more by the chemo. I sure hope things turn around for him. We have a one year old son and our world has been flipped upside down. Just starting our life and our family and this happens out of nowhere.
The doctors told us the same thing they told you...that basically, this type of tumor usually occurs in children and is very rare in adults. However, one bright spot is that this type of tumor responds very well to chemotherapy and radiation treatments and is less likely to grow back after having gone through it.
I hope things are improving for you and your husband. I will say a prayer for you tonight.
My name is Everett,My wife was at UCSF in June to have her tumor removed. She has gone thru
pretty much every thing your husband is going thru. She is still doing Chemo. This sounds as if it is a little more comon than they say. My wife is 47 years old. The Doctors at UCSF said
they had never seen it any one here age. My wife had leasons spotted on her Brain 4 years ago. Our Doctors here said it was (central nerivous system sarcoid).A multi organ disease,
they could not find it any were else in her body. I pray you husband is doing will?
If I can help you please contact me. I would like to compare with you what things your we
both are experiencing.
I am the wife and was caregiver for my husband who passed away August 22, 2010. If I can answer any questions please feel free to ask. It was Dx in 1999 and he lived 11 1/2 years before he finally died.
I am attempting to contact everyone who I know who has had or has a loved one who has had medulloblastoma. My husband had a brain tumor in his cerebellum (about the size of a golf ball) in Feb 2007 which was completely resected and subsequently had 37 sessions of radiation to his brain and spine. He was left slightly handicapped (balanced issues, left side a bit spastic, and a slight speech inpediment. His brain MRI's were repeated every 3 mo, then every 6 mo then every year always came out great. Just after the brain surgery he had a spinal tap to test the spinal fluids and he also had a PET scan which did not indicate any cancer cells in his spinal column or anywhere else. The neurosurgeon thought he was free and clear especially with the repeat brain scans. Kevin started having urinary symptoms: first frequent urination, then progressed to OAB and bladder retention. He didn’t tell me about the symptoms for quite a while. I saw that his “stream” was very weak one day and urged him to go to a urologist. The first urologist wrote his symptoms off to radiation damage. We sought help with another urologist who thought the same thing but took things a step further and did a TURP procedure to open up his bladder neck. This did not relieve his symptoms and in the mean time he developed numbness in his feet and buttocks. This is when he sought help from his neurosurgeon who ordered 6 MRI’s: 3 with contrast, 3 without. Kevin turned out to have a rather large tumor in his lower spine (L4-S2). He had surgery on New Year’s Eve: The doctor was not able to remove much of the tumor at all due to the nerve involvement as my husband made it clear that he didn’t want to risk being left a parapalegic. The surgeon didn't believe he could have gotten enought of the tumor anyway to merit the damage to the nerves. The pathology reports confirmed that it is grade IV medullaoblastoma again. The doc believes that the cancer cells dropped down into his spinal column before the tumor was even removed and remained dormant for years.
I want to get the news out. I strongly believe that anyone who has had medulloblastoma should be sure to have a full spinal MRI. If Kevin had a spinal MRI done every year they could have caught this early before the nerve involvement was too great to operate.
Could you offer any advice? The future is so uncertain. Radiation is supposed to happen within the next couple of weeks. We have yet to schedule the consult with the radiologist. We live in Camarillo California.
My husband was first diagnosed in Feb 2007, he is 49 years old.
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.
I am so sorry to hear of Ryan's illness. My heart goes out to you and your precious boys. I hope that Ryan will recover soon. He is an amazing inspiration to others with his unselfish dedication to helping others get through their fight with medulloblastoma. Please lean on your friends and loved ones for emotional support and help through this most difficult time. You are all in my thoughs and prayers.
Gloria (wife of Kevin dx Feb2004)
Thank u Globia that is very kind of u. My husbands fight has been hard and we are near the end the doc told me today :( He was found to have a tumor in nov of 2010 as a mri showed us he was puking all the time and dizzy for a couple months be4 they did the mri. After that mri he had surgery about 5 days after my 3 year son had his 3 year old bday in the hosp 1 day be4 my husband had the surgery. The surgery went well and they were able to remove most of the tumor in the back of his head right above the spine. When he woke from surgery he had double vision and google eyes he still has double vision to this day.2 days after the surgery they told us the bad news that it was cancer the highest grade. About a month after surgery he started radiation to the whole spine and head 32 rounds of that. He had a spinal tap done be4 radiation started and there was cancer tumor cells in his spine. He also could not walk well after the surgery and would use a wheelchair to get around,he would wear a eye patch to help to double vision. After the radiation they waited two months to do a mri and during that time Ryan would puke everyday once or up to 6 times a day. He was losing so much weight he is 6'4 and got down to 145pounds. The mri was done and it came out clean everyone was so happy and I was trying to feel like everyone else happy but something was holding back the joy,I had a feeling something was not right he was still so sick puking all the time and dizzy. 3 weeks after the mri I almost had to call for help to get him to the hosp he say to me I'm on deaths door he was so sick one night. This next morning his mom picked him up and took him to the hosp it is called the tom baker cancer center where we live they took him in right away and did a mri and the tumor was back and there was another tumor wrapped around his pituitary gland. He was now going to start 6 cycles of chemo they said his tumors where inoperable so they waited about 2 weeks to put weight on him and got the chemo going he was on so many drugs steroids and about 18 other meds. He was on the most aggressive chemo drugs there are he was on 5 different chemo drugs. He was almost done his 1st cycle of chemo and then he got ammonia and end up in icu on life support this was just @ the start of this month it happen 3 days in icu and he came back to us.he was better so they finished off the last round of the chemo to complete the 1st cycle. The pic line was what gave him the ammonia so that was removed in icu. During the first cycle of chemo he had 4 blood transfusions and his white cell counts would sometimes reach 0 so he was in the hosp all the time. He had a week off and the 2nd cycle was going to start so they put in a port line no pic line this time. He also has fluid in the brain that might needed to be drained with a shunt oh ya and the cancer was still in his spine they did more spinal taps along the way. So this last mon the 2nd cycle was a go but then a couple nights be4 he was losing his mind and talking weird making no sense it became worse. So chemo was canceled and they ran test after test spinal tap,mri.pet scan.ct scan,and so on they thought it was the time for the shunt to be put in but they said they might have found meningitis so they have canceled the shunt that was today and he is on antibiotics they are still waiting to find out if this is what is the problem it takes about 3 days for the cultures to come back. I was with him today and it is very hard because he talk to himself and makes no sense his mind is lost and I miss him. He does sleep most of the time, the doc told me we all need to get together his parents,docs,and others to decide on some very hard stuff about making him as pain free and comfortable as possible he most likely is near the end. This is aLl written very scatter and poorly sorry about that my mind is full of worries. He does have a blog about his journey www.ryanalewis.com he is a very good @ writing he did stop posting anything new about 3 weeks ago as he became more and more sick. Thanks for reading and please ask me for contact info if anyone would want to chat.
Reading this brings about all the feelings Im feeling today. No one really knows this pain other than the people here that are dealing with it.My sister cant seem to get a break with this either. One thing after the other is going wrong. My heart goes out to you...
Thank u for the kind words of support. I will pray for u and ur sis and please take care. Are u from the states?or canada?
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.
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.
Where in CA do you live? My thoughts and prayers are with you and your sister.
We live in the bay area northern Ca.
I was hoping you were closer so we could meet.
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.
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