looking for other germinoma brain tumor survivors

yeoj9592

Germinoma
Hi! Im new to this network, but anyway, I'm glad to find this site. My son was diagnosed with a Teratoma in mid brain in 2008 and had a partial resection on the same year. As a result of his surgery he suffered DI, DVT,Short term memory loss and PTSD. He was on Desmopressin for about 3 months and thank God his, DI resolved. Fortunately the biopsy was benign. In August 2009 he had to go for a shunt placement due to progressing hydrocephalus secondary to blockage in his ventricle due to his tumor.His tumor was stable until Nov. 2010 he experienced headache, loss of vision, left sided weakness, facial droop and increased confusion. We rushed him to ER and found out that his tumor has grown 3x bigger and cancer markers were all critically high. His TERATOMA is now what they call a NON GERMINOMATOUS GERM CELL TUMOR and has reached his brain stem. Surgery was not possible at that time so, neuro-oncology team decided for an emergency chemo treatment. He had 6 cycles of chemo which he had a good response . . . Thank GOD! Unfortunately not all tumors shrunk, that surgery has to be done. My son had just had the surgery on 7/18/11. Tumors were completely removed. Neurosurgeon said that they did not damage any nerve based on the monitors hooked up on him during the surgery, but his vision, speech,balance and memory is impaired at this time. He is now on extensive rehab and recuperating well.Next step is radiation for 6 weeks.Luckily, his steroid stimulation test was normal,hence,will not be on steroid replacement treatment. It maybe a long road to full recovery, but I put all my trust in our LORD. . . . .

Rein517

Germinoma
Hey, My name is Aaron. When I was 12 years old I was diagnosed with a germinoma tumor on my optic nerve. I am now 22 years old, and still have double vision. I just had surgery in May to try to fix it, but unfortunately, that just made things worse. My double vision is different from most peoples. One of my eyes is now weaker than the other, and the muscles around the eye are also weaker, so my eye doesn't stay still. It moves a lot, causing my double vision to move, which makes life a whole lot harder.
I am glad to say, I am now free of the tumor.

~Aaron

purple12

KarenMR said:

Germinoma
Hi James,

I commented on one of your other posts. My son was diagnosed with a germinoma (germ cell) tumor in his brain when he was 16. He lost all of his pituitary function. He takes, ddavp testosterone, growth hormone, cortef and synthroid. He has what is now called PHP or panhypopituitarism which includes addrenal insuffiency and diabetes insipidus. Are you in a similar situation? He had a crainiotomy and 6 weeks of radiation. He has some trouble with his memory and school has been pretty difficult since treatment. It's been a big challenge for him all the way around. But, he has a really good attitude and he says he's happy to be alive. there is a really good group on Yahoo specifically for germ cell tumors. I don't know if I'm alowed to mention it here but I'm going to because it was a bit help to us. Here is the link: (copy and paste)

http://health.groups.yahoo.com/group/germcell/

This group deals with pituitary disorders:

http://health.groups.yahoo.com/group/panhypopituitarism/

Hope this helps. Contact me if you want and I'll send you my email address.

Karen

My daughter was diagnosed
My daughter was diagnosed with a hypothalmic germinoma at age 7. They did not remove the tumor, which was wrapped around her optic nerve as well. They did radiation for 6 weeks and it was resolved. She is now 25 yrs old. She has alot of various symptoms and I have been searching for others to compare what they are experiencing. She stopped making cortisol about a year or more ago. She is now panhypopititary. She has progressed to a point of obesity, has narcolepsy, pain and swelling in wrists, lupus symptoms (but not confirmed by tests, but by an ER doctor, anxiety, high blood pressure, short term memory loss, and high cholesterol. She is a phoenomal person who still maintains a job, and has maintained a joy due to her love for Jesus Christ. I am just wanting to compare notes with others and see what they are experiencing. I just read an article I found online, which explains that the narcolepsy and obesity are results of her pituitary involvement/radiation. I would love to correspond with you if you are still getting emails from this site, as I notice your post was quite some time ago. Becky

AndrewJ15

James,
I was 23 when
James,
I was 23 when diagnosed with germinoma. After surgery and treatment I am also somewhat high tone deaf, I have also lost most of my sense of smell and lost some taste. My vision is still in the recovery process. It has been nearly one year and I hope to recover all of these senses. I consider myself extremely lucky that I had this type of tumor, as it could have been much worse.

AndrewJ15

Vulgarism said:

Oh yes, I had some very
Oh yes, I had some very killer headaches myself, constantly. I had two huge tumors. I kept myself constantly medicated with whatever OTC meds I could find, and slept constantly to avoid the pain of the headaches. Hopefully, your son no longer has these.

I also kept myself medicated
I also kept myself medicated with OTC meds. Nyquil was the best for my situation, though it was only temporary. The migraine headaches (especially in the middle of the night) where nearly enbearable.

gary516

pineal germinoma
My son was recently diagnosed with Pineal Germinoma. He is being treated at Rush in Chicago and has not yet received radiation or chemo therapy. His biggest problems right now are upeard gaze and double vision. I am looking for 1). best recommendations for treatment and 2). who is the best doctor/hospital in treating this cancer. Thanks for your time.

daviddavid

gary516 said:

pineal germinoma
My son was recently diagnosed with Pineal Germinoma. He is being treated at Rush in Chicago and has not yet received radiation or chemo therapy. His biggest problems right now are upeard gaze and double vision. I am looking for 1). best recommendations for treatment and 2). who is the best doctor/hospital in treating this cancer. Thanks for your time.

David
Sorry to hear that, I'm 28 and just went through that exact thing about two years ago. I wish I had found this post earlier but maybe some of this helps. The best thing we did was to go to MD Anderson. There they had a Dr McCutchin who was able do a biopsy and determine if it was a germinoma since none of the other tests could tell. There few doctors in the world with much experience going into this part of the brain. after I was accurately diagnosed the amount of proton radiation I received was much lower than was previously going to be used. They were an amazing team and I believe saved me from a lot of the more serious side affects I read about. They've got a great team of radiologist. I've got bad photo-phobia, cant look up to well, seem kinda skidish, but hey I'm back to work and doing well

aye2002

2002 Germinoma Survivor
Hi, James! I was diagnosed with a Germinoma Brain Tumor at the age of 14. In regards to your symptoms...it was a good 5 years before I could even step outside, or be in any room that was even slightly warm, without breaking out into a horrible sweat. For me, when I was around any sort of heat, I would instantly become soaked in sweat and it was like I'd just jumped into a pool of water with all of my clothes on. I also had very bad panic attacks for several years following my cancer and those would leave me soaked in sweat also.

I had 6 and 1/2 weeks of radiation treatments and now one of the hormones that my Pituitary Gland produces (which my Pituitary Gland is just below where my tumor was) is lower in concentration than it should be and doctors think that is why I still have problems with heat.

I've been in remission now for almost 10 years and while I still have some heat tolerance problems, they are not nearly as bad as they used to be. So hang in there!!!

aye2002

AndrewJ15 said:

James,
I was 23 when
James,
I was 23 when diagnosed with germinoma. After surgery and treatment I am also somewhat high tone deaf, I have also lost most of my sense of smell and lost some taste. My vision is still in the recovery process. It has been nearly one year and I hope to recover all of these senses. I consider myself extremely lucky that I had this type of tumor, as it could have been much worse.

Sense of smell and taste...
I'm glad to know that I am not the only one to with a loss of sense of smell and taste. I have lost more of my sense of smell than what I can taste but there are still a few things that have no taste to me.
This sounds funny, but I live in the country around a lot of skunks, which have a tendency to get hit in the road and leave an awful smell. My mom and Dad are shocked every time we drive by one that's been hit and I cannot smell it!
I also love to cook and I cannot smell what I am cooking and sometimes will put too much of something into what I am cooking, because I cannot taste it otherwise.

aye2002

gary516 said:

pineal germinoma
My son was recently diagnosed with Pineal Germinoma. He is being treated at Rush in Chicago and has not yet received radiation or chemo therapy. His biggest problems right now are upeard gaze and double vision. I am looking for 1). best recommendations for treatment and 2). who is the best doctor/hospital in treating this cancer. Thanks for your time.

Treatment options...
Does your son have a cyst on either of his optic nerves?

I have a cyst of my left optic nerve and prior to my doctor's discovering that I had the Germinoma brain tumor, my eyes were completely paralyzed and I had developed double vision when I looked a certain way.
After surgery, my eyes were still paralyzed and I still had double vision, but the neurologists said that both of those things would get better over time. After a few weeks, my eyes were no longer paralyzed, but I now have very jagged movements of my eyes when I try to look down quickly. My double vision has gone from being double all across my vision, to now just being double in my peripheral vision.

In regards to treatment and hospital: Duke University Hospital in Durham, North Carolina is one of the leading hospitals in the U.S., if not the world for brain tumors and the pediatric neuro-oncologist, Dr. Sridharan Gururangan, is a wonderful doctor. I had six and a half weeks of radiation at Duke and that eliminated my tumor. I have now been in remission for almost 10 years. I also went to the Duke Ophthalmology clinics for several years following my tumor.

I know Duke is a long ways from Chicago, but like I said, it is one of the best hospitals for treating brain tumors in the U.S.

Good luck!

aye2002

kieranwiddowson said:

Germinoma
Hi all, i am so glad i have found this page in relation to germinoma brain tumours. Im Kieran i am 21 from England in the UK, four years ago (aged 17) i was diagnosed with a Malignant Germinoma Brain Tumour after getting repetitive headaches, muscle weakness, my stance wasnt right and i had photophobia. The first GP i saw thought i had migraines as they run in the family, i went back and saw a different doctor and she wanted me to go for some scans. A lump as it was called was showing on the scan so they sent me to a neurosurgical speicalist hospital (Queen Elizabeth Hospital in Birmingham). They too did scans and i had to have a biopsy of the lump. the surgeon told me he was 99.9% sure it was just a benign lump, they had to wait for the results from hystology.
I had the results 9 days later and i was told i had a Cancerous Pineal Germinoma Brain Tumour i was ok to go home on dexamtheasone 2mg four times a day and i would get an appointment with a Cancer doctor.
Six weeks later i had passed out at home so i was rushed back in, they thought i had got a second fast growing tumour so they took me to theatre after having scans to do a debulking. They had to do a Craniotomy instead as the scans showed an abscess over 80% off my brain and as described by the Neurosurgeon who took over my case he said "As they lifted the piece of skull away the abscess was just like a volcano about to erupt"
I was told that straplococus had got in through one small hole from where i had the biopsy. From there i spent 16 weeks in hospital fighting for my life i had hydrachephalus, c-deficial, viral meningitus, D.V.T. I was in theatre 16 times having central lines, external drains and two shunts etc fitted and removed. I have a V.P Shunt at present.
I had 25 sessions of radiation 15 of them on brain and spine and 10 of them on my brain. I am now 4th year post radiation and i have so many problems:
1. Eroding Right Hip
2. Crumbling left knee
3. Hyperacusis (damaged nerves in my ear canals from radiotherapy)
4. Vision problems (my eyesight is getting worse)
5. Major hormone deficieny i am on a daily testosterone gel
6. Headaches every single day
7. My thyroid is starting to fail, i was told it will as approach 4th year post
8. Short term memory loss
9. Possible infertilty
10. my gums in my mouth are wearing away
11. excessive weight gain and stretch marks

i was told that i was born with the tumour its simply a collection of germs gathered together when i was a foetus and the tumour grew, when my hormones kicked in and i started maturing the tumour was woke and grew and grew.
They wernt able to remove any of it as it was on the pineal gland next to the pituatry gland so they let the radiation shrink it, it cant be found on current scans i have.
I have been told that there is only a 2% chance the tumour will come back but if it does it will be on the spine which could leave me with paralysis. I have also been told there is a 2%-4% chance that the cancer will come back in some other part of my body. At present i have MRIs every 6 months at minimum.
Now id love it for some of you to comment back to me as i have searched everywhere and havnt found anybody or heard of anybody in the UK who has had one, i dont know if any of you are from the UK.

Regards
Kieran Widdowson

Germinoma Survivor
Hi, Kieran! My name is Ashley and I have been in remission from a Germinoma Brain Tumor for almost 10 years now. I have very weak knees and am visually impaired due to an inoperable cyst the tumor left of my left optic nerve. I have double peripheral vision because of the cyst, tunnel vision (which includes no sight below my nose), jagged movements of my eyes when I look down quickly, and eyes that work 100% opposite of one another.
I have short term memory loss, which has improved as I've gotten further away from the tumor, and chronic migraines, which have also improved as I gotten further away from my tumor. I went through about a 3 year series of trying different preventative migraine medications, which my system kept becoming immune to, and after that my migraines had become so mild that my doctors and I assumed that it would be better for me to just learn to ignore them, which I have done successfully.
Hang in there! And if all else fails remember: you're still alive, despite the set backs you've had!

aye2002

kieranwiddowson said:

Germinoma
Hi all, i am so glad i have found this page in relation to germinoma brain tumours. Im Kieran i am 21 from England in the UK, four years ago (aged 17) i was diagnosed with a Malignant Germinoma Brain Tumour after getting repetitive headaches, muscle weakness, my stance wasnt right and i had photophobia. The first GP i saw thought i had migraines as they run in the family, i went back and saw a different doctor and she wanted me to go for some scans. A lump as it was called was showing on the scan so they sent me to a neurosurgical speicalist hospital (Queen Elizabeth Hospital in Birmingham). They too did scans and i had to have a biopsy of the lump. the surgeon told me he was 99.9% sure it was just a benign lump, they had to wait for the results from hystology.
I had the results 9 days later and i was told i had a Cancerous Pineal Germinoma Brain Tumour i was ok to go home on dexamtheasone 2mg four times a day and i would get an appointment with a Cancer doctor.
Six weeks later i had passed out at home so i was rushed back in, they thought i had got a second fast growing tumour so they took me to theatre after having scans to do a debulking. They had to do a Craniotomy instead as the scans showed an abscess over 80% off my brain and as described by the Neurosurgeon who took over my case he said "As they lifted the piece of skull away the abscess was just like a volcano about to erupt"
I was told that straplococus had got in through one small hole from where i had the biopsy. From there i spent 16 weeks in hospital fighting for my life i had hydrachephalus, c-deficial, viral meningitus, D.V.T. I was in theatre 16 times having central lines, external drains and two shunts etc fitted and removed. I have a V.P Shunt at present.
I had 25 sessions of radiation 15 of them on brain and spine and 10 of them on my brain. I am now 4th year post radiation and i have so many problems:
1. Eroding Right Hip
2. Crumbling left knee
3. Hyperacusis (damaged nerves in my ear canals from radiotherapy)
4. Vision problems (my eyesight is getting worse)
5. Major hormone deficieny i am on a daily testosterone gel
6. Headaches every single day
7. My thyroid is starting to fail, i was told it will as approach 4th year post
8. Short term memory loss
9. Possible infertilty
10. my gums in my mouth are wearing away
11. excessive weight gain and stretch marks

i was told that i was born with the tumour its simply a collection of germs gathered together when i was a foetus and the tumour grew, when my hormones kicked in and i started maturing the tumour was woke and grew and grew.
They wernt able to remove any of it as it was on the pineal gland next to the pituatry gland so they let the radiation shrink it, it cant be found on current scans i have.
I have been told that there is only a 2% chance the tumour will come back but if it does it will be on the spine which could leave me with paralysis. I have also been told there is a 2%-4% chance that the cancer will come back in some other part of my body. At present i have MRIs every 6 months at minimum.
Now id love it for some of you to comment back to me as i have searched everywhere and havnt found anybody or heard of anybody in the UK who has had one, i dont know if any of you are from the UK.

Regards
Kieran Widdowson

Germinoma Survivor
Hi, Kieran! My name is Ashley and I have been in remission from a Germinoma Brain Tumor for almost 10 years now. I have very weak knees and am visually impaired due to an inoperable cyst the tumor left of my left optic nerve. I have double peripheral vision because of the cyst, tunnel vision (which includes no sight below my nose), jagged movements of my eyes when I look down quickly, and eyes that work 100% opposite of one another.
I have short term memory loss, which has improved as I've gotten further away from the tumor, and chronic migraines, which have also improved as I gotten further away from my tumor. I went through about a 3 year series of trying different preventative migraine medications, which my system kept becoming immune to, and after that my migraines had become so mild that my doctors and I assumed that it would be better for me to just learn to ignore them, which I have done successfully.
Hang in there! And if all else fails remember: you're still alive, despite the set backs you've had!

Campbell_N

KarenMR said:

Germinoma
Hi James,

I commented on one of your other posts. My son was diagnosed with a germinoma (germ cell) tumor in his brain when he was 16. He lost all of his pituitary function. He takes, ddavp testosterone, growth hormone, cortef and synthroid. He has what is now called PHP or panhypopituitarism which includes addrenal insuffiency and diabetes insipidus. Are you in a similar situation? He had a crainiotomy and 6 weeks of radiation. He has some trouble with his memory and school has been pretty difficult since treatment. It's been a big challenge for him all the way around. But, he has a really good attitude and he says he's happy to be alive. there is a really good group on Yahoo specifically for germ cell tumors. I don't know if I'm alowed to mention it here but I'm going to because it was a bit help to us. Here is the link: (copy and paste)

http://health.groups.yahoo.com/group/germcell/

This group deals with pituitary disorders:

http://health.groups.yahoo.com/group/panhypopituitarism/

Hope this helps. Contact me if you want and I'll send you my email address.

Karen

Hi KarenMR,
I am new to this
Hi KarenMR,
I am new to this site, but I hope that this helps you. I was diagnosed with a germinoma brain tumor when I was 11 years old, I am now 25. I have lost most of my pituitary functions. I take ddavp, testosterone, synthroid, and prednisone. I use to take growth hormones until the doctors decided that I was full grown, so they took me off of them. I also have hypopituitarism, which includes addrenal insuffiency and diabetes insipidus. I had surgery which removed about half of my tumor, then I had 7 weeks of radiation. I have short term memory loss, which hurt me when I was trying to get through school. I had a lot of help from my parents and my friends. My symptoms started out as just normal headaches all the time, which would go away with tylenol. Then I started having double vision. I went to the eye Dr, where she saw some fluid behind my right eye. I had an MRI and it found the tumor. I had my surgery and radiation treatments done at the Medical College of Georgia. The hospital actually had a camp for kids that had the same type of problems that I had every summer. I got to met a lot of people that were going through the same things that I was, which really helped me out.
I hope that this helps out,
Campbell_N

Atom12

Me too
I was diagnosed with a pineal germinoma tumor when I was 38. Double vision, etc. Had a biopsy, chemo and radiation. As of 2012, doing well. The reason I joined was to see how others are dealing with the lingering side effects. The big ones for me are tinnitus (ringing in the ears) and memory loss. Any tips would be appreciated.

Dalbert

Germanoma
Hi James, My name is David and I was diagnosed with a germanoma in 1982 at the age of 13. I am 43 years old now. I have high tone deafness and lost hearing in my right ear in my thirties. I take synthroid, and had to take testosterone to finish my development as an adolescent. I was very sensitive to light and lost salivary function for about three years after I finished treatment and had to rely on artificial saliva. I had surgery and radiation therapy and received a total of 8200 rads of radiation on my head and spine. If you would like to talk to someone who is living with the side effects of the treatment for Germanoma, I would be happy to talk to you. I was treated at the Children's Hospital of Philadelphia. Where were you treated?

KellyMiller

KarenMR said:

Germinoma
Hi James,

I commented on one of your other posts. My son was diagnosed with a germinoma (germ cell) tumor in his brain when he was 16. He lost all of his pituitary function. He takes, ddavp testosterone, growth hormone, cortef and synthroid. He has what is now called PHP or panhypopituitarism which includes addrenal insuffiency and diabetes insipidus. Are you in a similar situation? He had a crainiotomy and 6 weeks of radiation. He has some trouble with his memory and school has been pretty difficult since treatment. It's been a big challenge for him all the way around. But, he has a really good attitude and he says he's happy to be alive. there is a really good group on Yahoo specifically for germ cell tumors. I don't know if I'm alowed to mention it here but I'm going to because it was a bit help to us. Here is the link: (copy and paste)

http://health.groups.yahoo.com/group/germcell/

This group deals with pituitary disorders:

http://health.groups.yahoo.com/group/panhypopituitarism/

Hope this helps. Contact me if you want and I'll send you my email address.

Karen

Son's tumor
This story is the same as my son's. Excactly the same. I would love for you to email him and share stories about this. He has went through the radiation of brain and spine for 28 treatments. On DDVAP, Hydrocotisone and Levothyroxine. Sodium levels are out of wack a lot. Spend 3 times in hospital since radiation.

If interested in sharing with my son, please let me know.

Kelly

enneberg

Dalbert said:

Germanoma
Hi James, My name is David and I was diagnosed with a germanoma in 1982 at the age of 13. I am 43 years old now. I have high tone deafness and lost hearing in my right ear in my thirties. I take synthroid, and had to take testosterone to finish my development as an adolescent. I was very sensitive to light and lost salivary function for about three years after I finished treatment and had to rely on artificial saliva. I had surgery and radiation therapy and received a total of 8200 rads of radiation on my head and spine. If you would like to talk to someone who is living with the side effects of the treatment for Germanoma, I would be happy to talk to you. I was treated at the Children's Hospital of Philadelphia. Where were you treated?

Adult medicine costs
Here is a question to the adults. How did you cover the costs of meds once you were no longer on your parents insurance? My son was diagnosed at 7 and he will be 18 tomorrow.

Blackhawks53

enneberg said:

Adult medicine costs
Here is a question to the adults. How did you cover the costs of meds once you were no longer on your parents insurance? My son was diagnosed at 7 and he will be 18 tomorrow.

Adult medicine costs
Enneberg,

Typically children can stay on their parent's health insurance until they reach the age of 26. You should confirm this with your health insurance company.

Jimspen99

Our daughter
At age 14, in October 2011, our daughter was diagnosed with a pituitary germinoma. She is 4'5" and 75 pounds currently. She underwent surgery (through the nose) and 28 rounds of radiation. She was also diagnosed with severe vision loss in her left eye, along with diabetes insipidus. She is currently on DDAVP and human growth hormone (which she had taken before her cancer diagnosis and grew 5 inches). She will soon start on female hormone. Fortunately, after the surgery, her vision improved, and as of last week, the eye doctor confirmed complete restoration of her vision. A young woman we know who is in medical school reported to us that the treatment for pituitary cancer, is in, as her professors told her, the space age as far as medical advancements.

Jimspen99

Jimspen99 said:

Our daughter
At age 14, in October 2011, our daughter was diagnosed with a pituitary germinoma. She is 4'5" and 75 pounds currently. She underwent surgery (through the nose) and 28 rounds of radiation. She was also diagnosed with severe vision loss in her left eye, along with diabetes insipidus. She is currently on DDAVP and human growth hormone (which she had taken before her cancer diagnosis and grew 5 inches). She will soon start on female hormone. Fortunately, after the surgery, her vision improved, and as of last week, the eye doctor confirmed complete restoration of her vision. A young woman we know who is in medical school reported to us that the treatment for pituitary cancer, is in, as her professors told her, the space age as far as medical advancements.

p.s.
Our daughter was diagnosed and treated at Children's Hospital in St. Louis. Her surgery was at Barnes-Jewish North Hospital, annexed to Children's, in one of the few surgical suites in the Midwest containing a full, in-surgery MRI. Her radiation was completed at the Siteman Cancer Center, also annexed to Children's. I would highly recommend these caring professionals. They saved our daughter's life.