looking for other germinoma brain tumor survivors

james8220

Hi I'm james at 15 I was diagnosed with a germinoma brain tumor. I now am high tone deaf, heat intolerance. would like to talk to anyone with a germinoma or anyone with the same side effects from treatment that I have.

thanks

[Deleted User]

Hello james8220,
Besides
Hello james8220,

Besides posting your message on this board, you may want to post your message on the rare and other cancers discussion board. You are encouraged to use keywords on our search field to locate others going through a similar experience. We wish you the best in locating others.

Be well,
Your CSN Staff

KarenMR

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

james8220

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

Germinoma
Hello KarenMR

I lost my pituitory gland to I have trouble with heat does your son also have that problem and I have a weight problem but the doc says all the kids with the tumor I had have the same problem

I'm taking DDAVP, cortef, and synthroid growth hormone, and testosterone

KMPonder

james8220 said:

Germinoma
Hello KarenMR

I lost my pituitory gland to I have trouble with heat does your son also have that problem and I have a weight problem but the doc says all the kids with the tumor I had have the same problem

I'm taking DDAVP, cortef, and synthroid growth hormone, and testosterone

Husband had a Mixed Germ Cell - Long Time Survivor
I am new to these boards but found this post today. My husband who just turned 44 was diagnosed with a mixed germ cell tumor on his hypothalamus (inoperable) when he was 20. They watched it grow for almost a year, and then started chemo. After two cycles of chemo, the tumor completely disappeared! He was then given another cyle of chemo along with radiation (full head and spine at the time).

All these years he has had panhypopituitarism and takes synthroid, DDAVP, testosterone and cortef. He has lived well and healthy! Then in August of this year, he had a couple of symptoms set in quickly - double vision and imbalance. We quickly got him in for an MRI to find out he has three brain tumors - Anaplastic Astrocytoma III. The Duke physicians said they were radiation induced tumors. He had a brain biopsy in September then did 33 radiation treatments along with 42 days of oral chemo at Duke. He has now just completed his first cycle of higher dosages of Temodar. After his first MRI last week (post treatment), the inoperable brain stem (2) tumors and cerebellum tumor, they have shrunk more than 50%! The doctors were very pleased as are we.

At this time all of his dizziness, imbalance and double vision issues are gone! We know technology has come a long way, as this chemo and radiation regimen were a breeze compared to what he endured in 1987.

Although, this is a difficult time emotionally, we have great hope that he can yet again beat inoperable brain cancer and continue to live another 23 plus healthy years!

My best to each of you!

Vulgarism

I was diagnosed with mixed
I was diagnosed with mixed germ cell tumors in September of 08, I just finished treatments this May. One tumor was directly on the pituitary gland, and since the tumor formed at puberty, they estimated I had these tumors for several years, crushing the gland. One tumor was about the size of a kiwi. As a result of the pituitary being crushed, I make very few hormones naturally, and the necessary are supplemented by pill, including DDAVP, hydrocortisone, and levothyroxine.

WingnPrayer

KMPonder said:

Husband had a Mixed Germ Cell - Long Time Survivor
I am new to these boards but found this post today. My husband who just turned 44 was diagnosed with a mixed germ cell tumor on his hypothalamus (inoperable) when he was 20. They watched it grow for almost a year, and then started chemo. After two cycles of chemo, the tumor completely disappeared! He was then given another cyle of chemo along with radiation (full head and spine at the time).

All these years he has had panhypopituitarism and takes synthroid, DDAVP, testosterone and cortef. He has lived well and healthy! Then in August of this year, he had a couple of symptoms set in quickly - double vision and imbalance. We quickly got him in for an MRI to find out he has three brain tumors - Anaplastic Astrocytoma III. The Duke physicians said they were radiation induced tumors. He had a brain biopsy in September then did 33 radiation treatments along with 42 days of oral chemo at Duke. He has now just completed his first cycle of higher dosages of Temodar. After his first MRI last week (post treatment), the inoperable brain stem (2) tumors and cerebellum tumor, they have shrunk more than 50%! The doctors were very pleased as are we.

At this time all of his dizziness, imbalance and double vision issues are gone! We know technology has come a long way, as this chemo and radiation regimen were a breeze compared to what he endured in 1987.

Although, this is a difficult time emotionally, we have great hope that he can yet again beat inoperable brain cancer and continue to live another 23 plus healthy years!

My best to each of you!

Dizziness, Imbalance, & Double-Vision?
I am glad to happen across your story.
Experiencing dizziness, imbalance, & double-vision is what got me into the Doctor's office to begin with, but I was daignosed a little differently as Stage 4, Lung (2.8 cm), Non-small, slow-grow, with metz-to-brain (2). (1) is at brain stem causing double-vision (RAD DR. calling it "Maintenance"), (1) at back of brain operable-affecting balance. Right now they are using either Full or Whole Brain RADs, the 10th & final RAD treatment will be this upcoming Tuesday, Jan 5th, 2010.
You say your husband's brain stood up to 33 radiation treatments along with 42 days of oral chemo at Duke. I think that is great and him taking higher doses of Temodar shows promise. The tumor shrinkage being 50% at the stem and cerebellum really look encouraging. I will need to do more reading to know if there might be any crossover hope to a case like mine, but surely it is encouraging in cases like yours.
Thanks for stopping by this topic & I hope I get to do more reading from you.

Jenkdaddy

Germanoma
I was diagnosed with a Germanoma brain tumor when I was 21 after suffering with double vision for over a year. An MRI showed a tumor about the size of a walnut just above my brain stem pushing up on the Optic Chiasm. Due to the location, the tumor was inoperable. However, after 10 weeks of chemotherapy and radiation treatment the tumor was gone.
I've been in remission now for over 13 years.

Thanks to all the fine people of the University of Wisconsin Hospital.

Good luck in your treatment.

KMPonder

Jenkdaddy said:

Germanoma
I was diagnosed with a Germanoma brain tumor when I was 21 after suffering with double vision for over a year. An MRI showed a tumor about the size of a walnut just above my brain stem pushing up on the Optic Chiasm. Due to the location, the tumor was inoperable. However, after 10 weeks of chemotherapy and radiation treatment the tumor was gone.
I've been in remission now for over 13 years.

Thanks to all the fine people of the University of Wisconsin Hospital.

Good luck in your treatment.

After this much time, and
After this much time, and with you saying the tumor is gone, I see you as cured, not just in remission!! My husband's mixed germ cell tumor in 1987 was completely gone after 2 rounds of chemo, but they followed up with whole brain and spine radiation. In August 2009, he was diagnosed with three anaplastic astrocytomas, but is doing well with treatment thus far. Since they said these were "radiation induced" tumors, I implore you to continue to get regular MRIs. Before his diagnosis last year, he had not had one since 2001. Looking back, I feel we missed something along the way by not being more diligent in getting them even annually! It was never suggested he do such, since 22 years had gone by before a new tumor diagnosis.

Like my husband's, your story is inspirational, and I wish you continued great health! Treatments have come so far in the last two plus decades, that I KNOW my husband's tumors are going to be gone again. They had already shrunk more than 50% after his first MRI post treatment (more radiation and Temodar).

steelersfan

Hi James,
My son was
Hi James,

My son was diagnosed with germinoma brain tumor on his pineal gland at age 12 & he is now 14. Since then he has had 11 surgeries between shunt revisions, removal and his sinuses. To this day he suffers from daily chronic headaches that will just not leave him. he can't do his school work for more than an hour then he has to stop because he starts to feel sick and he head will start to feel worse than it already does (if that is possible). When the tumor was found he had 5 weeks of radiation and that was all and he now goes every 6 months for his check up. We are so thankful that he is here, don't get me wrong, but it would be great to see him make it through a day without being in pain. We have had him to so many doctors, trying to figure out what was causing the headaches but nothing has worked. The damage from his sinuses are repaired from the radiation but here we are.. He is a strong young man and that is what keeps us going each day... I admire you and all others out there fighting this.. YOu "STAY STRONG" and stay well....

Vulgarism

steelersfan said:

Hi James,
My son was
Hi James,

My son was diagnosed with germinoma brain tumor on his pineal gland at age 12 & he is now 14. Since then he has had 11 surgeries between shunt revisions, removal and his sinuses. To this day he suffers from daily chronic headaches that will just not leave him. he can't do his school work for more than an hour then he has to stop because he starts to feel sick and he head will start to feel worse than it already does (if that is possible). When the tumor was found he had 5 weeks of radiation and that was all and he now goes every 6 months for his check up. We are so thankful that he is here, don't get me wrong, but it would be great to see him make it through a day without being in pain. We have had him to so many doctors, trying to figure out what was causing the headaches but nothing has worked. The damage from his sinuses are repaired from the radiation but here we are.. He is a strong young man and that is what keeps us going each day... I admire you and all others out there fighting this.. YOu "STAY STRONG" and stay well....

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.

Dee.F

mother of a son with a germinoma brain tumor
Hi James,
If you are still checking this sight please respond so I know that you are reading. I have a lot to share. Good luck to you.

james8220

Dee.F said:

mother of a son with a germinoma brain tumor
Hi James,
If you are still checking this sight please respond so I know that you are reading. I have a lot to share. Good luck to you.

hi
hi I haven't checked back for a while.

Benn through a lot lately.

Had to have all my teeth pulled because of the cancer treatment.

I have implants now.

Tuesdaymj

Germinoma
Hi James,

My name is Meredith and I was diagnosed with a supra-sellar germinoma over 10 years ago when I was 19. I had to have surgery because the doctors didn't know what kind of tumor I had. Then I had radiation. The first MRI I had the showed that the tumor was gone was on 2/27/01. I just had an MRI on 2/28/11 and the results were great! No tumor! Radiation works!

Although the tumor is gone, I'm now a pan-hypopituitary patient. I don't make any hormones. I think my body was pretty normal up until I was 15, but I think I have had DI all my life.
When the tumor was found, I had cold intolerance. Now I take Thyroid so that's better. I also take hydro-cortisone to replace cortisol.

I am no tone deaf, which is a good thing since I play the bassoon.

Do you have DI?

james8220

Tuesdaymj said:

Germinoma
Hi James,

My name is Meredith and I was diagnosed with a supra-sellar germinoma over 10 years ago when I was 19. I had to have surgery because the doctors didn't know what kind of tumor I had. Then I had radiation. The first MRI I had the showed that the tumor was gone was on 2/27/01. I just had an MRI on 2/28/11 and the results were great! No tumor! Radiation works!

Although the tumor is gone, I'm now a pan-hypopituitary patient. I don't make any hormones. I think my body was pretty normal up until I was 15, but I think I have had DI all my life.
When the tumor was found, I had cold intolerance. Now I take Thyroid so that's better. I also take hydro-cortisone to replace cortisol.

I am no tone deaf, which is a good thing since I play the bassoon.

Do you have DI?

germinoma
Yea I have di

Because of the radiation I am low tone deaf, I have heat intolerance so I can't stay in the sun to long, whic makes it hard since I live in Arizona. I take ddavp, hydrocortisone and synthroid.

jennynieves

steelersfan said:

Hi James,
My son was
Hi James,

My son was diagnosed with germinoma brain tumor on his pineal gland at age 12 & he is now 14. Since then he has had 11 surgeries between shunt revisions, removal and his sinuses. To this day he suffers from daily chronic headaches that will just not leave him. he can't do his school work for more than an hour then he has to stop because he starts to feel sick and he head will start to feel worse than it already does (if that is possible). When the tumor was found he had 5 weeks of radiation and that was all and he now goes every 6 months for his check up. We are so thankful that he is here, don't get me wrong, but it would be great to see him make it through a day without being in pain. We have had him to so many doctors, trying to figure out what was causing the headaches but nothing has worked. The damage from his sinuses are repaired from the radiation but here we are.. He is a strong young man and that is what keeps us going each day... I admire you and all others out there fighting this.. YOu "STAY STRONG" and stay well....

Germinoma Brain Tumor Survivor
Hi there My Daughter was diagnosed with Germinoma Brain Tumor in March of 2010 she was only 13 yrs, it all began with her vision getting blurry and her eyes going side to side and will not be steady, I then took her to the eye Dr and she informed me that she couldn't see within 1 feet to take to to the ER since it could be something wrong with her head, I decided to take her that same day thinking it could be just something with her eyes and that the eye Dr was wrong, well we where waiting for about 3 hours when they called us and took her for a Brain Scan and surely after that the surgeon,Neurologist, Anesthesiologist and Clinical Social worker walk in our room and let me know her results of her brain scan and what needs to be done and the risk, It was the scariest thing I had ever gone through specially because my daughter heard everything and she said to Me " Mom I don't want to die" that just broke me down in tears, she went to have her brain surgery and only a portion of her brain tumor was removed and I was told that the other had to be removed with 3 days of Chemotherapy and 6 weeks of Radiation, after her surgery she was doing just fine but the surgeon had told me that he did all that he could do but the tumor damaged her pituitary gland and therefore she lost her vision completely, a few hours later she woke up from her surgery and she told the surgeon to turn off the lights because it was to bright for her eyes and that's when we walked in to our surprise that our prayers guided the surgeon and she was able to see again with both eyes, she now has been cancer free and gets brain and Spinal MRI every 4 months, she was diagnosed with Adrenaline Insufficiency and Diabetes Insipidus, she takes DDAVP, Levathroid and Hydrocortizone she does not have any headaches however she is always hot, her immune system is much stronger than mine we all get sick and she doesn't which is really good news, This Information is so that you can know that no matter what they say its always good to never loose your faith.

gryphon84

james8220 said:

germinoma
Yea I have di

Because of the radiation I am low tone deaf, I have heat intolerance so I can't stay in the sun to long, whic makes it hard since I live in Arizona. I take ddavp, hydrocortisone and synthroid.

Germinoma
A little over 7 years ago, at 19, I was diagnosed with 2 germinomas. 1 in the pituitary and 1pm the pineal. I now take desmopressin, levothyroxin, gonadatropin, prednisone because my pituitary is shot. I have a shunt and am doing pretty well.

LCP

james8220 said:

hi
hi I haven't checked back for a while.

Benn through a lot lately.

Had to have all my teeth pulled because of the cancer treatment.

I have implants now.

Hi James and friends,
My
Hi James and friends,
My daughter had a pituitary germinoma 23 years ago, with cranial and spinal radation. She too had cognitive difficulties many of you have detailed, but over the years has seen much improvement. She also, with the help of advanced in vitro, is the lovely mother of a beautiful two year old daughter. She continues to take the meds,and has a very nice and normal life. Stay positive!

AMMar1116

Germinoma
I was 12 going on 13 when I wasa diagnosed with a germinoma tumor in my pituitary glad. The only symptom I had was the loss of my vision. I went legally blind. They did an MRI to see why my vision was so bad and they found it. The tumor was pressing on my optic nerve. I went through the brain surgery, but they were only able to get a biopsy. Then I started 4 rounds of chemo and 6 weeks of radiation after that. It's been almost 9 years since I was diagnosed. I'm a psychology major in college and trying my best. I am legally blind, I'm on hormone replacement pills, DDAVP, cortef and synthroid. I have a weakened immune system, but no severe health problems. My pituitary is still in me, but basically asleep. I consider myself very blessed although I have health problems, because others have it way worse."There but for the grace of God go I"

jyerke

AMMar1116 said:

Germinoma
I was 12 going on 13 when I wasa diagnosed with a germinoma tumor in my pituitary glad. The only symptom I had was the loss of my vision. I went legally blind. They did an MRI to see why my vision was so bad and they found it. The tumor was pressing on my optic nerve. I went through the brain surgery, but they were only able to get a biopsy. Then I started 4 rounds of chemo and 6 weeks of radiation after that. It's been almost 9 years since I was diagnosed. I'm a psychology major in college and trying my best. I am legally blind, I'm on hormone replacement pills, DDAVP, cortef and synthroid. I have a weakened immune system, but no severe health problems. My pituitary is still in me, but basically asleep. I consider myself very blessed although I have health problems, because others have it way worse."There but for the grace of God go I"

germinoma
Hi. I an interested in your post. My daughter who is 9 was diagnosed with a suprasellar germinoma 2 months ago. She had DI for some time, undiagnosed of coursel but what clued us in to the tumor was visual changes. Her vision was 20/200. She has always worn glasses- since 18 mths old. An MRI revealed a large suprasellar germinoma. It was affecting her optic nerve, pituitary, and hypothalmus. She had a biopsy which told us that the tumor was a germinoma. She has had 2 rounds of chemo and the post MRI shows a tiny area of tumor left, but not enough to do any more chemo. We are starting radiation next week at Emory. We looked in to both proton and photon radiation. After plans for both were made, it was determined that the proton radiation would give too much radiation to parts of her ventricles. She will have ventricular radiation and involved field radiation using photon IMRT. We just saw a neuro opthamologist a week ago and the vision in her left eye has improved to 20/70; her right is still 20/200. We hope her vision will continue to improve. But I am curious about what tools you may need to help with school work. Any information would be greatly appreciated. Thanks

kieranwiddowson

jyerke said:

germinoma
Hi. I an interested in your post. My daughter who is 9 was diagnosed with a suprasellar germinoma 2 months ago. She had DI for some time, undiagnosed of coursel but what clued us in to the tumor was visual changes. Her vision was 20/200. She has always worn glasses- since 18 mths old. An MRI revealed a large suprasellar germinoma. It was affecting her optic nerve, pituitary, and hypothalmus. She had a biopsy which told us that the tumor was a germinoma. She has had 2 rounds of chemo and the post MRI shows a tiny area of tumor left, but not enough to do any more chemo. We are starting radiation next week at Emory. We looked in to both proton and photon radiation. After plans for both were made, it was determined that the proton radiation would give too much radiation to parts of her ventricles. She will have ventricular radiation and involved field radiation using photon IMRT. We just saw a neuro opthamologist a week ago and the vision in her left eye has improved to 20/70; her right is still 20/200. We hope her vision will continue to improve. But I am curious about what tools you may need to help with school work. Any information would be greatly appreciated. Thanks

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