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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

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.

KellyMiller
Posts: 3
Joined: Mar 2012

My son was diagnosed with GBT in February of 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.

kibbles96's picture
kibbles96
Posts: 2
Joined: May 2013

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.

TT
Posts: 1
Joined: Oct 2014

Hi All,

I wanted to post my husband's experiences, as I feel they would be hopeful to see when newly diagnosed and contemplating treatment.

My husband is 30, and was diagnosed with pineal germinoma four months ago.  The tumor was about the size of a walnut and was pure germinoma.  His symptoms leading up to diagnosis were double vision and severe fatigue.  He was very tired but could not sleep.  He had surgery to remove 2/3 of the tumor, and then 25 rounds of proton radiation.

Surgery was hard, but he recovered without any visible side effects.  A VP shunt needed to be installed for the short term, but as the tumor has reduced in size he is probably no longer using it.

The first 12 radiation treatments were to his ventricles.  He suffered nausea, but that ended shortly after the 12 treatments were over.  Zofran and steroids helped manage it.

The last 13 treatments were to the tumor site.  He suffered fatigue during treatment but it was nothing compared to how he felt before the tumor was diagnosed.  Again, steroids were used to manage fatigue.  Directly after treatment ended he returned to work full-time.  His double vision has improved but not completely.  The fatigue is still with him, but seems to be slowly getting better.

Next week we'll get a follow-up MRI to peek in on how his tumor is doing.  If the tumor has not reduced, than more radiation might be needed.  However, there is a very high probability that the tumor will not need to be treated ever again.  For germinoma, they can "cure" it, not just "treat" it.

Long term, there may be a need for hormone replacements if his pituitary gland gives out.  His double vision may never totally dissappear.  He may experience some short term memory loss. He'll be getting follow-up MRIs and blood tests for a while.  But all in all, treatment for these kinds of tumors has come a long way.

It can be scary to have a germinoma diagosis and not know what to expect.  I hope sharing his story can help lesson people's fears.  I know I would have liked to see more cheerful information when we embarked on his treatments.

aye2002
Posts: 7
Joined: Feb 2012

   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     

enneberg's picture
enneberg
Posts: 3
Joined: Dec 2008

Hi .james I don't know if you are still looking but my email is mtcolefamily@live.com my son has had 3 germinomas.

janMB
Posts: 1
Joined: Jul 2017

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.

 

jvd127
Posts: 1
Joined: Aug 2017

Hello,

I am new to this site, however I wanted to reach out. I am a 2 year survivor of germinoma. I have my 2 year check up this week. I was diagnosed back in June 2015 after having symptoms of double vision and vertigo. I went to Penn Hostpital in Philadelphia where I was diagnosed after the neurosurgery team took a biopsy from my tumor. I then received 5 weeks of proton therapy at Penn. I was told I was in remission shortly after that as the proton therapy worked. I am now turning 30 this week. Please feel free to reach out to me if you have any questions. I was lucky in that I am a survivor and did not have to receive any chemotherapy. I have experienced memory loss issues, specifically short term memory since the treatment. Thank you everyone for sharing your stories and you all are in my thoughts and prayers. Thank you.

abarash
Posts: 1
Joined: Sep 2017

Hello,

I stumbled across this site looking for new pineal germinoma information. After reading some posts from parents of newly diagnosed and those diagnosed younger than me, I remember how I felt and wanted to reach out to encourage positivity..

I was diagnosed with a Benign Pineal Germinoma in 1998. I recieved 6 weeks of radiation treatment at 52Gy. My neurologist told me that I was lucky twice. Once for the rarity of the tumor, and twice because these types of tumors are so radiosensitive.

The 6 weeks of radiation did the job!

I do also suffer from some memory issues, temporary loss of hair in the treatment area, and long lasting vertical diplopia. But these things have become the new normal. When I renew my prescription every 2 years the prismatic adjustments are minor and I am more concerned about the need for bifocals. :-) As for the memory issues, what was I saying?...

Some of the memory loss problems can be alleviated by making lists and notes and alarms. With cell phone it is cake! I don't have to carry around a notebook anymore! 

 

The good news is, that was nearly 20 years ago. In the meantime I helped raise my two daughters, kept continuously employed in technical positions, and have been healthy.

 

Good health to those of you healing from this.

Adam

 

Brandtmc
Posts: 1
Joined: Sep 2017

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. 

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