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looking for other germinoma brain tumor survivors

james8220
Posts: 13
Joined: May 2009

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

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Your CSN Suppor...
Posts: 200
Joined: May 2008

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
Posts: 3
Joined: Jul 2009

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
Posts: 13
Joined: May 2009

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's picture
KMPonder
Posts: 102
Joined: Dec 2009

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!

WingnPrayer's picture
WingnPrayer
Posts: 27
Joined: Nov 2009

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.

purple12
Posts: 1
Joined: Oct 2011

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

PinkDaisy
Posts: 1
Joined: Jun 2013

Hello!

I just joined this site not too long ago. I actually found it by mistake or better yet, through the grace of God. It is so inspiring to be able to read so many blogs of so may people who are going through the exact same things as I do!!!!

I was 9yrs old. I was a very energetic girl who spent the summer in her bathing suit due to us having a pool. It was that summer that I heard the phrase "Awww look at that little pot-belly she is getting how cute!" But honestly at that time and age, it did not phase me in the least! As summer went on I gained more weight! My mom worked nights and often prepared my dad and I meals for dinner. She was actually accusing him of going to fast food places over the meals she would fix us! Dad explained NO NO NO, we always ate what she fixed and would occasionally treat ourselves may be once a week to DQ but that was it! Another puzzle piece was how tired I was. I can remember begging daddy to put me to bed and it was only 7pm. My vision would be great one day then really bad the next! This was due to the tumor pressing on my optic nerve one time then not the other. After Christmas break I called my mom from school begging to come home due to a headache. She talked me into staying due to only having an hr left. She asked me later after school how was my headache and I remember thinking to myself, "headache, what headache? I do not remember such thing at all???" I saw the scared look on my moms face and immediately played it off with, "Oh geese...getting old mom I forgot all about it!" January 19th 1994 I had surgery. The tumor was located on my pituitary the size of a silver dollar. My surgeon removed enough for biopsy which THANK GOD it was benign!!! But I went through six wks of radiation therephy which removed it.

Today I will be celebrating my 29th birthday in July and THANK HIM everyday I have! I have a pharmacy of medication I have to take today due to the tumor- Cortef, DDAVP (water hormone), Synthroid (thyroid), Trileptal (seizures that are located in the frontal lobe of the brain), and zovia (birthcontrol). I have been obese ever since the tumor! Had my fair share of being made fun of in school and out of school! I developed sleep apnea in 2001 and in 2012 I was diagnosed with Narcolepsy!!!! I NEVER would have imagined in 1000yrs of having this! I was told by my doc that since I had a neurological disorder it was actually common for ppl to develop this, especially in their mid 20s to mid 30s. I also suffer Short Term Memory. This was a HUGE challenge in school but through my awesome teachers and PRAYER I graduated and even graduated with an Associates degree! A monumental moment for sure!!! I developed high cholesterol in 2005 and I am still on meds for that.  

I admit that I have had my fair share of arguments with God, but ALWAYS ask for His forgiveness and keep my faith as strong as can be! I would love to hear more about your daughter :) ~Shannon

Campbell_N
Posts: 1
Joined: Mar 2012

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

KellyMiller
Posts: 3
Joined: Mar 2012

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

Vulgarism's picture
Vulgarism
Posts: 47
Joined: Dec 2009

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.

Jenkdaddy
Posts: 1
Joined: Jan 2010

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's picture
KMPonder
Posts: 102
Joined: Dec 2009

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
Posts: 1
Joined: Mar 2010

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's picture
Vulgarism
Posts: 47
Joined: Dec 2009

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.

AndrewJ15
Posts: 2
Joined: Nov 2011

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.

jennynieves
Posts: 1
Joined: Mar 2011

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.

Dee.F
Posts: 1
Joined: Feb 2011

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
Posts: 13
Joined: May 2009

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.

LCP
Posts: 1
Joined: May 2011

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!

Tuesdaymj
Posts: 3
Joined: Mar 2011

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
Posts: 13
Joined: May 2009

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.

gryphon84
Posts: 1
Joined: Apr 2011

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.

Sanlove
Posts: 2
Joined: Dec 2012

can you help me? Thanks so much! 

Sanlove
Posts: 2
Joined: Dec 2012

Appreciated!

AMMar1116
Posts: 1
Joined: Jul 2011

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
Posts: 1
Joined: Jul 2011

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's picture
kieranwiddowson
Posts: 1
Joined: Aug 2011

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

aye2002
Posts: 6
Joined: Feb 2012

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
Posts: 6
Joined: Feb 2012

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!

yeoj9592
Posts: 1
Joined: Sep 2011

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
Posts: 1
Joined: Sep 2011

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

AndrewJ15
Posts: 2
Joined: Nov 2011

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.

aye2002
Posts: 6
Joined: Feb 2012

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.

gary516
Posts: 1
Joined: Jan 2012

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
Posts: 1
Joined: Feb 2012

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
Posts: 6
Joined: Feb 2012

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
Posts: 6
Joined: Feb 2012

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!!!

Atom12
Posts: 1
Joined: Mar 2012

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
Posts: 1
Joined: Apr 2012

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?

enneberg's picture
enneberg
Posts: 2
Joined: Dec 2008

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
Posts: 1
Joined: Aug 2012

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
Posts: 2
Joined: Aug 2012

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
Posts: 2
Joined: Aug 2012

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.

smf3608
Posts: 1
Joined: Feb 2013

My name is Sean at age 23 i was feeling week tired and losing weight i seen my doc and she decided i neded a MRI right away they found a mass which i found out was a germinoma after the craniotomy the surgion said the tumor was milignant cancerous one week after i went through 6 weeks of radiation treatments which completly killed the mass i am addrenial insuffiant and have diabities insipidus and take levothyrixine hydrocortizone testostorone injections because my bodys hormone no longer function i am now 23 years old tumor free but have problems one is complex migrains which is double vision my arm and lips go numb and them serious migrain for 24 hours after once its overwith i feel fine i am also hot all the time  i dont know why does anyone have similer symptoms.

Sven
Posts: 1
Joined: Mar 2013

Most of the posters here are discussing their side effects and the burdens they carry, so naturally those who don't have significant side effects have little to post about. However, I want to make sure others know that they won't necessarily have a slew of problems. Last year I was diagnosed after about a month of double vision, and my treatment was at the University of Washington Medical Center. My neuro-oncologist had originally planned on using cisplatin and etoposide followed by radiation, but just before we began he found research while conferring with an expert at UCLA finding that carboplatin had been just as effective as cisplatin while also far less toxic. I was switched to that drug, and the tumor was gone halfway through chemotherapy, allowing us to go easy on the radiation. I've come out of this almost the same as I went in - I still have some double vision and I now have a shunt, but my body is in remarkable condition.

If you're preparing for treatment, please be encouraged by this, and even more importantly, please investigate the treatment regimen I had. May God be with you!

dcazgal
Posts: 1
Joined: Mar 2013

Hi! 32 years ago when I was 17 I was diagnosed with a pineal germinoma.  Well, actually they thought it was a pituitary tumor until they got in there. They missed it because it didn't blood test as a pituitary tumor and gyno said I was having "missed periods" because I was "stressed".  My GP discarded checking for diabetes mellitus 'cause I said no to his question of  "are you drinking gallons of water?" Maybe if I'd been able to express that I couldn't go more than 45 minutes without hogging the school water fountain he'd have looked harder.  And my Mom wouldn't take me to our eye doctor 'cause I was wearing my glasses on top of my head!

I had surgery (golf ball size tumor near hypothalmus) and six weks of radiation.  Got off fairly easy.  Only taking DDAVP.  Boy was it fun to take before the nasal spray was available!

Now I'm almost 50 years old and wondering if some of my problems come from that experience.  High tone deaf (and maybe some lower) - they attributed to the radiation.  Sound right?  Very slight loss of field vision from the radiation too.  Caught that because after I recovered I still had that feeling of a film over my eye, and a specialist finally believed me and gave me a field test.  I asked about memory problems right away and they told me "No, we didn't go anywhere near that region".  So I barely dragged myself through college - remembering 60% of what I learned. Now the loss seems a bit worse and they've ruled out Alzheimers.  Now I find this site and hear a bit about memory loss. They think maybe I have ADD but I wonder if the tumor left me a gift after all.

Anyone have suggestions on dealing with this?  And have docs agreed it's related to the tumor?  And how/in what way?

Thanks.

Rob1969
Posts: 1
Joined: Mar 2013

I was diagonsed in 2003 at the rip old age of 33yrs. They found seven tumors and one was wraped around my right side hearing nerve so I hear nothing on that side however on the left I have good hearing. I also have vision trouble on the right side, this is also a result of nerve damage during my crainiatomy. Anyway as far as memory lt oss goes I have some short term loss but longterm is still good and even with the short term loss its not really events its mostly names and other details like that. I still work and try live as close to normal as posible.

Gabri
Posts: 1
Joined: Mar 2003

Hi I am a germinoma survivor.  I was diagnosed at age 9 after hyperdypsia, slow growth, nausea and other symptoms led me to have a 2nd MRI (the first failed to show the tumor).  I have been in remission for enough time now that I worry less about reoccurrence of this cancer and more how to deal with the hormonal and functional problems that have resulted.  Sometimes I feel alone in the world because my husband does not understand my chronic headaches and fatigue, my doctors try to treat my present symptoms but fail, and my parents also try to reduce my pain and provide naturalistic and dietary cures.  Having had chronic headaches, likely due to the tumor, the treatment, and the hormonal problems, I have come to recognize that pain is just part of my life.  Its the chronic fatigue that comes with it that is really bothersome. 

My question to dcazgal is, How did you take DDAVP before the nasal spray was available?

In response to dcazgal's questions, vision and hearing symptoms may be related to the radiation or the tumor itself.  With regard to memory loss, I can't tell you specifics (They claimed I did not have memory loss either, but my husband worries that I forget things in the short term), but although they may not have touched on the memory area with the surgery or radiation, the brain is interconnected and some parts may have been effected. 

It feels good to share with others that have had similar experiences and see many of the medications I take listed by others. 

jkpark
Posts: 1
Joined: Aug 2013

Hello everyone! I don't know if everyone is still active in this forum, but I thought I'd give it a try and share my experiences. Wish I found it sooner!

I was diagnosed with pineal germinoma in October 2008 after experiencing severe headaches due to fluid buildup (hydrocephalus) caused by the tumor. After 3 weeks in the hospital being examined, waiting for surgery, (they performed an endoscopic third-ventriculostomy for the buildup and a biopsy) and then recovering from surgery, I went through 4 months of chemotherapy (carboplatin and etoposide) and 11 weeks of radiation. I did not have the same post-treatment symptoms as many of you have, but because of the treatment I cannot have children (non-motile sperm) and my memory, according to my fiance, is not as good as it used to be. I have also noticed that I do not feel as rested as I used to after I sleep and I feel exhausted throughout the day, even after sleeping plenty of hours. Perhaps it could be due to sleep apnea (which I don't think I have), but I wonder if it has something to do with  melatonin production from the pineal gland. Does anyone have any insight or experience with this? 

KellyMiller
Posts: 3
Joined: Mar 2012

My son was diagnosed with GBT in February or 2012 at the age of 19. he went through 28 radiation treatments and they were very hard on him. He was in and out of the hospital several times during treatment for low sodium levels. He is 1 year 4 months cancer free. He takes Levothyroxene, Desomospressin, Hyrdocortizone and Testosterone patches. He tends to be very tired most of the time and has vision issues that we are currently dealing with. I do notice memory loss but it is much better than it was. It is time for his regular MRI in a couple of weeks. I always have this concern that the tumor will raise it's ugly head again.  I don't know if any of this information helps or not, but it sure is nice to see all the stories from other patients and cargivers.

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