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Adult Medullablastoma

murphy55
Posts: 1
Joined: Apr 2002

Close family member has been diagnosed with tumor on brain stem. He refuses treatment and is reluctant to talk to anyone about it. Not sure what to do now! Please help, need advice.

rob1126's picture
rob1126
Posts: 3
Joined: Jun 2002

hi, well i am a survivor of a meduloblastoma. diagnosis 32% chance of survival. ive had 3 brain surgeries, 6 weeks radiation and 4 doses of chemotheraoy. tumor removed and 5 tears in remission. i am great today and living healthy. i am more than willing to talk to anyone about this. cancer is something that is part of my life and it is why i am the way i am today. pls, if u want a friend, pen pal, anything, an ear to listen. i am here, my name is robert. email: mcveigh1979@yahoo.com. also, i was 17 at diagnosis and am 22 almost 23 now.

globia
Posts: 9
Joined: Jan 2009

I am attempting to contact everyone who I know who had medulloblastoma. My husband as you may recall had a brain tumor in Feb 2007 which was completely resected and subsequently had 37 sessions of radiation to his brain and spine. His brain MRI which 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. The neurosurgeon thought he was free and clear. 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 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.

I don’t want to cause any undue worries but it is better to be safe than sorry.

Kind regards,

Gloria Studley
(805) 660-0439

evakyll
Posts: 1
Joined: May 2011

Hi Globia,
How is your husband? I pray he made it through the last reocurrence of medulloblastoma.

My brother-in-law is now going through the EXACT same thing. Although it's been 10 years since his first brain tumor was removed, it's been confirmed that cells had spread to his spinal fluid and he now has a tumor in his lower spine. He is having surgery tomorrow. The doctors are optimistic that they can get all of the tumor out since it's encapsuled. However there is a chance he can loose control of his urination and bowel movements, it would be temporary.

I know it's been a few years since your last posting, but I would be grateful for any advice or comfort I can give my sister and their two children. They are all in shock that this came back after successfull surgery and radiation 10 years ago. My brother-in-law's twin has also had 2 tumors, one in is face and one in his throat, but I am not sure if they also were medulloblastomas. He refused both radiation and chemotherapy and is doing ok.

Anyway, I really hope that you and your family is happy and healthy at this time.

Sincerely,

Eva

fighter34
Posts: 2
Joined: Jan 2011

Just curious as to why you had 3 brain surgeries?? We are very knew at this whole process, my husband was diganosed in December with a tumor on his cerebellum. It was removed and came back cancerous, he then had an MRI of his spine and it was confirmed that he has the cancer all up and down his spine. He is now doing radiation a total of 32 treatments with 14 more to go. Then we will have 4 to 6 months of chemo. Is your story kinda like this one???

itsme1
Posts: 5
Joined: Mar 2011

Hi my son is 26 and has just been diagnosed with Medulloblastoma, last December. He has since had an operation to remove the big tumour on the right in his cerrebellum, he has a smaller one one the left. This was not removed, he has had 6 weeks of radiotherapy and now in 2nd cycle of high dose chemotherapy with stem cell rescue. Just trying to find people to talk to. Hope you want to.

Signed a concerned mum

elrain's picture
elrain
Posts: 8
Joined: Apr 2011

I am 26 and was diagnosed with Medullablastoma in October of 2010. I had the tumor taken out on October 29th, and have since gone through 6 weeks of radiation and 3 rounds of chemo. I am still doing the chemotherapy, I will be done in July. I would be more than happy to talk with you. I know it can be a scary time, and I am sure you have a lot of concerns. I hope your son is doing well. You can e-mail me at emmyregan@hotmail.com if you would like.

itsme1
Posts: 5
Joined: Mar 2011

Hi Elrain

Thanks for the post. Where are you?

We live in Melbourne Australia.

Are you on the St Jude protocol?

My son has completed his 2nd cycle. Had a chest infection and readmitted to hospital, but he is ok now.

How are progressing?

Do you have any other symptoms as a result of your diagnosis?

My son has slurred speech and ataxia and of course chronic fatigue from the radiotherapy, the chemotherapy only made all of these much worse.

Do you get regular mri

itsme1
Posts: 5
Joined: Mar 2011

Hi Elrain

Thanks for the post. Where are you?

We live in Melbourne Australia.

Are you on the St Jude protocol?

My son has completed his 2nd cycle. Had a chest infection and readmitted to hospital, but he is ok now.

How are progressing?

Do you have any other symptoms as a result of your diagnosis?

My son has slurred speech and ataxia and of course chronic fatigue from the radiotherapy, the chemotherapy only made all of these much worse.

Do you get regular mri to check you?

elrain's picture
elrain
Posts: 8
Joined: Apr 2011

I am actually in Salem Oregon. Doernbecher's Childrens Hospital in Portland is heading my case, but I am getting my treatment from a general oncologist here in town (Portland is an hour away.) They got out all of the tumor that they could see, and I am going through treatment to get the remaining cells they couldn't get in surgery. How did your son's surgery go? Sorry he is in the hospital, I have been very lucky and havent gotten any infections. I have gotten, what they think is Neuropathy, in my legs. It is nerve damage from the radiation and chemo drugs and can be quite painful. I have experienced some short term memory loss, but hopefully that gets better over time. How did they find your son's tumor? Is his prognosis good? I do get regular MRIs, and thankfully they have all come back clear.

Your son is in my prayers.

itsme1
Posts: 5
Joined: Mar 2011

Hi

Thankyou for giving me your email address.

I sent you an email a couple of days ago.

I would really appreciate any communication with you.

Thanking you in advance

Conerned mum

elrain's picture
elrain
Posts: 8
Joined: Apr 2011

I am 26 and was diagnosed with Medullablastoma in October of 2010. I had the tumor taken out on October 29th, and have since gone through 6 weeks of radiation and 3 rounds of chemo. I am still doing the chemotherapy, I will be done in July. I would be more than happy to talk with you. I know it can be a scary time, and I am sure you have a lot of concerns. I hope your son is doing well. You can e-mail me at emmyregan@hotmail.com if you would like.

steph0steph
Posts: 7
Joined: Jul 2011

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.

WymerJ
Posts: 1
Joined: Sep 2011

Hello,

my name is Justin Wymer. I'm 23 years old (11/14/1987) I was diagnosed with an adult medullablastoma on August 8th of this year. For ten months I was having severe fits of nausea and vomiting (generally limited to the morning hours), as well as severe migraines that originated in the base of my spine. I went in for an MRI, thinking I had a bulging disc, or had injured something during the course of my work.

Not an hour after getting the MRI on my cervical area, I received a phone call from my primary, who told me, "Where are you? At home? Are you sitting down? Well sit down. Now go back to the emergency room; you need major brain surgery. I'll be praying for you. -click-"

I went back, got through triage, and had a new home in the ICU. Three days later (8/11/11), I was being carted in by a nice fellow who said he'd be knocking me out for eight hours while the doctor operated on me. I woke up from anesthesia, came to, and the gravity of the situation ensued. The doctor, confident that he resected the tumor completely, but barring the results of a few tests, confirmed that I'd need radiation and possibly chemotherapy.

I was shipped to UCSF (in San Francisco) for a second opinion, as well as the take of a tumor board (a group of specialists who deal with naught but brain tumors and recovery) to decide a proper coarse of treatment.

As far as that goes, they now want me in very soon for the radiation. My CSF (spinal fluid) came back free and clear, yet they tell me I still need therapy to kill the chances of recurrence. I was turned on to these boards by the ACS for help finding others with this disease/condition. Honestly, to see your husband's struggle plotted out like this is very hard for me. To see how it's affecting you as well is nearly impossible to imagine. I feel for you, from the bottom of my soul and I hope that your husband comes back around, full swing, and I know that he will. Keep your will strong and your faith high. I'm here if you'd like to talk.

I know I'm not exactly the same demographic as this case, but I think it helps to talk with others who are on this same road.

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