looking for other germinoma brain tumor survivors

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?

Appreciated!

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 said:

Pineal Germinoma

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.

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.

dcazgal said:

Pineal Germinoma

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.

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 said:

Pineal Germinoma

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? 

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.

Hi I'm Lewis. I'm 17 right now, and my story goes back to when I was 13. I was diagnosed with hypopituitarism and diabetes insipid us. I was put on levothyroxine and desmopressin to treat this. I didn't know that this would change my entire life. The year before I was 5'5 and in shape and a very good basketball and baseball player. Because of this, I stopped growing, got out of shape, and immediately lost all my confidence. I learned to live with it the next couple years, and I had some athletic skill. When I was 16, I got through football season, and I made the JV basketball team. I went to practice every single day, I worked my butt off, and then one day I went home sick from school and threw up on my front lawn. I went inside to lay down, and I saw everything doubled. My mom called my doctor and I went in and he recommended an MRI on my brain. Turns out a tumor was causing everything, and it was there for a while. So I had a biopsy and it was cancer. So they explained I would need chemo and radiation therapy. The chemo was so tiring. I mean it wasn't that bad, but just sittng there with an IV in my arm was pretty boring. I mostly would just read to pass the time. I went eight times in 3/21 day cycles and before I knew it I was on to radiation. So I was put in the machine and it would fry my brain five days a week for five weeks, and before I knew it, it was over. My last day was in May, so I still had to finish school. I passed everything except my trig regents because it was stupid hard and I never had a tutor to teach me the stuff I missed. So over the summer I lifted for football, went to lake placid, and just rested for the remainder. Then on July 30th my mom got the call that the cancer was gone! This school year so far I've played football and im now lifting for next year and I retook the trig regents and I hope I passed, or else I will be really sad. I'm also getting surgery for my eyes. The biggest thing that got me through this is just knowing that my school, my family and my friends cared for me. I also built an infinite trust in God who is with me always. This has changed all aspects of my world and I will never look back. This didn't slow me down, it only gave me a reason to keep going.

   Hi, James! I know this is several years past when you joined...but I did want to tell you that things will improve (if they haven't already) in regards to your side effects from cancer treatments! I had heat intolerance for many, many years following my cancer and treatments, but as time has passed it has improved greatly!! I've been in remission now for going on 13 years and have learned to cope, for the most part, with the side effects from the tumor itself and treatments. 
   I have restless leg syndrome in both legs, though it is typically worse in my right leg, extreme hypercusis (sensitivity) to loud and high pitched sounds, visual impairment (which is permanent due to the location of the cyst on my left optic nerve, caused by the Germinoma), and pretty much feel like a porcupine, from all the labs done over the years! LOL! The good news is: you'll learn to work around the side effects and ways in which to manipulate them in order to make you feel better! One thing that helped me tremendously when I would get hot was to take cold water and rub it on the back of my neck and wrists and ankles, if possible. Those are heat trigger areas in the body that will help you cool off tremendously, if you add something cold to them!
   Also, don't know if you were left visually impaired by the tumor or not, but a great place to get blind canes and other mobility devices is: Ambutech. You can check them out at:  http://ambutech.com. 
   Don't know if you lost your hair or not during radiation, but my neurologist at the time told me if and when my hair did come back, it would come back in phases and it could be anywhere from 10 to 20 years before certain parts of my hair came back. I was 14 at the time, so I didn't fully believe him, and it took 4 months for my hair to even sprout and begin growing in various stages again! Anyway...to make a long story short, I have been in remission now for over 12 years--and I have several patches of hair which are just starting to grow back! One place, in the front-middle part of my head, is about an inch long!!!
   
I know there are many times when you get frustrated from your lack of energy, heat intolerance, etc., but things will get better!

Ashley     

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

Kieran,

I was diagnosed with a pineal germinoma in July 2010 at the the age of 29. I had a biopsy which determined the tumor to a germ cell (germinoma) tumor. The doctors initially treated my tumor with radiation and then followed up with two cycles of chemo (Carboplatin and Etoposide) and then finally more radiation. After treatment I did a MRI every three months for the first two years. Then 1 every six months for two years. Today I my first MRI in a year and I am concerned with how its going to turn out. All of the pervious MRIs I felt fine with. However, I feel different about this one because some of the symptoms that I had when initially diagnosed are starting to appear again. i.e. blurry vision, sharp shooting headaches and vertigo.

After the MRI I went to see my oncologist and he said he would call me later in the afternoon to let me know the results of the MRI. It is now opast 8pm and no call. Im hoping that the old saying "no news is good news" hold true but I cant help but think the worst. I do have an appointment to see him in the morning so maybe he is just waiting to talk to me in person. I thought it was odd though that before I left he gave me some dexamethasone. I dont recall ever taking this before. He told me to wait for his call and he will tell me if I need to take it or not. I guess I will just have to wait and see what happens tomorrow morning.

Joe

Hello all,

I am not sure if this posting area is still active, but I felt it was really important to share some information that has really helped my family.  My son was diagnosed with a Germinoma at age 13 and went through the biopsy, chemo (etopsine and carboplatine), as well as radiation for a month. (Dartmouth for chemo, Mass General for Proton Therapy.) All the doctors and nurses we worked with were amazing and from that experience my now 17 year old son aspires to become a pediatric nurse.

But one thing was missing...the emotional support and outlet needed when going through a situation that few can relate to, or compare notes with.  Through a bit of determination on my part and devine intervention, as in the rural area we live in offered no "support groups" for my son or us, I found the Magic Foundation.  They are an incredible foundation comprised of families going through much of what we have, their work revolves around several disorders related to endocrine issues and growth disorders, and have a special strand related to Panhypopituitaryism. That link is https://www.magicfoundation.org/Growth-Disorders/Panhypopituitarism/

There is group you can join with a blog as well.

The advocates do important work, such as lobbying for continued use of growth hormone - as it does so much more then help kids grow...and due to cost insurance companies often will not support continued use.

They also have a yearly convention in Chicago held in July that we attended in 2014 and it was a life changer for my son.  He could personally connect with others his same age who had been through the same stuff.  There were activites and information sessions that were awesome, paired with experts in their field who had great information. 

My son made a friend for life whom he still stays in contact with and visits and the both of our families have a great connection.  Many make this an annual event of their own and my son has been wanting to go back.

I am a 12-year survivor on an intracranial pineal germinoma.  I was originally diagnosed in November of 2005 after my symptoms finally pushed me in the door of a MD.  I was suffering from severe thirst and a complete loss of my libido.  Blood tests revealed my testosterone level was effectively zero, and my sodium/potassium balance was askew.  After a preliminary MRI, a tumor was located on my pituitary gland.  I had a craniotomy to resect a piece of it which confirmed the germinoma diagnosis.  I received 6 weeks of outpatient chemotherapy (etoposide and carboplatin/cisplatin) and 1 month of radiation, all with St. Louis University Hospital. 

In February of 2009 during a routine follow-up MRI, a new tumor turned up.  This one was not located on the pituitary gland or central line, and its location prevented surgery to confirm the metastasis of the original germinoma.   I saw a new oncologist at Siteman Cancer Center who attempted to treat it with a different chemotherapeutic drug (forgot the name).  I had a terrible reaction to it causing temporary paralysis of my muscles.  This prompted the cessation of chemo and I was ultimately referred to the transplant team at Siteman.   They recommend high dose chemotherapy with stem cell rescue.   I had two bone marrow transplants in February and May of 2010.

12 years.  **** cancer.