my son has just been diagnosed

[ymno8]

hi
i am new to all this and would welcome any advice or support. my 17 year old son has just been diagnosed with a teratoma in his testicles this has apparently spread to both his bowels and his lungs,i am so confused by both his doctors and looking stuff up on the internet.
he has been transferred to st barts in london for chemotherapy and i have been given some hand outs about possible side effects,i saw him yesterday and he is holding up well but i am worried sick.
any help at all greatly appreciated
regards
ymno8

[Scott]

Welcome to the forums, ymno8. I'm very sorry your son had to join our exclusive club, but there are some great people in it who will be happy to share their experience with him and with you.

In the UK, "teratoma" means what "non-seminoma" means in the United States. The most important thing, as I'm sure you've already been assured, is that chemotherapy is extremely effective treatment for testicular cancer.

I'm sure you've found the Testicular Cancer Resource Center already.

[dadmo]

ymno8:
At this point all I can do is add to what Scott said and reassure you that this type of cancer is very curable. I know that having it spread to the lungs sounds bad, my son had the same thing, but in the case of testicular cancer it is quite common. At this point don't worry about the long term effects of the chemo just get him better now. Have him bank sperm and just focus on getting better. Take it one step at a time the next few months will be the most difficult.

[ymno8]

thank you for your words of support,my son stefan appears to be getting top treatment and seems remarkably brave about the whole thing.far braver than i would be in the same situtation im sure.

[Jens]

Hi ymno8.

I have a son that will turn 19 in a week, so I know something about how much we care about our kids, as they grow out of our reach.
Another thing that I know, is that TC is curable. Just a little over a year ago I discovered a lump (same pathology as your sons) and ended up doing chemo .
Now I'm quite well and confident it will stay like that.
So, please take comfort in my experience and support your brave son Stefan.
HE WILL BE FINE!

Best wishes
Jens

[ymno8]

thank you for replying to my post, stefan starts his full chemotherapy on monday, i have read the leaflets regarding side effects and i am dreading watching him getting sicker. he has already lost so much weight, he was prior to this a strapping six foot three seventeen stone rugby player he is already down to 12 stone and just doesnt seem to want to eat at all.it is very difficult for me to see him like this. i know he is getting the best treatment and everything i have read on the internet about st barts is positive but i still feel helpless and afraid for him.
anyone else who is seeing a loved one go through chemo i would really value any feedback or experiences of what he must be going through.
he is still being immensely stoic about his treatment but he is now getting very bored at being stuck in a hospital room all the while.he has laptop,playstation,tv etc but he is just so bored.
thank you
ymno8

[Chris'Mom]

This week my son marks his one year anniversary of when it all began...and he is doing great....he was 20 at diagnosis and had four rounds of chemo and RPLND surgery in NY.....I sat with him daily for the chemo...and the worst part was watching him get stuck every day with a needle and why a port was probably the way to go...towards the end, he would be stuck three or four times to find a vein...but other than that he tolerated the chemo and had no side effects (neuropathy, ringing in ears etc.) so he was lucky...but it cured him...your son will get thru this....please keep in touch...Mary Ellen

[dadmo]

Make sure Stefan takes his anti-nausea medication; don't let him wait until he begins to feel sick. If he lets the nausea get ahead of him he will have a tough time getting back on top of it. He may not feel like eating but it's very important that while he is on chemo he drinks fluid by the gallons/liters has lots of protein and keeps his calorie count high. It doesn't matter what he eats. Throw any diet regiment out the window he can worry about a proper health conscious diet when he's better. My son did a great job staying ahead of the nausea and said that at it's worst it felt about the way you feel in the morning after a night of hard drinking.

[Mom]

The day we left our son at the hospital for chemo was the day my husband cried. A year later he has no residual effects of the chemo and is doing really well. He said the other night "unless I'm down there fooling around, I don't even know that it is gone." He feels that the fact he was continually hydrated flushing the chemo from his system is one of the reasons he has done so well. Even though Stefan is bored and would rather be home he is better off where he is so that they can take care of any side effect immediately. Hang in there, stay positive, next year at this time you will be encouraging someone else. Dianne

[jdunn]

It will be a year March 7th that my son started his first of four rounds of chemo. Like MaryEllen, I sat with Josh through every moment. It was the hardest most difficult time in both our lives. You can't cry in front of your child so you learn to cry inside. It's a parents worst nightmare. Today, Josh is stronger and has a different outlook on life. I too have a better perspective on what is important in life. Like Dadmo said, take the anti-nausea pills even if he feels fine. You have to stay ahead of it. Best of Luck to you and your precious son. It will get better, I promise.

[Chris'Mom]

Like Jane said....after all of this nightmare...life can be even better. This week my son has been home from college...and last night for the first time in four years he went to mass with us for Ash Wednesday to receive ashes. Our Priest almost fell over when he saw Chris and he hugged him! Chris has returned to religion and is more introspective...but he is happy and healthy...we were unable to visit his Dr. in NY today because of the weather in NY...next week he will go for his checkup...your son will do great and come out of this stronger...Mary Ellen

[ymno8]

gamec and gamec

stefan is scheduled to start high dosage chemotherapy on monday,he will be in hospital for four weeks for the first course,he is taking part in a trial called gamec and gamec-v. the doctors were very convincing and the decision has been made now,was just wondering if you guys have heard of this.he will have the orchiectomy after chemo is this normal? i am sure the doctors know what they are doing just seems unusual scheduling. any feedback is greatly appreciated.
the five drugs being used are
g-csf (g)
actinomycin d (a)
methotrexate (m)
etoposide (e)
cisplatin (c)

does anyone know of anyone else involved in this trial?
thank you for your words of support
regards
derek

[Scott]

For advanced stage testicular cancer, chemotherapy may precede the orchiectomy because it's important to deal with the metastatic disease right away. Clinical trials are preferred treatment in high risk cases, though 4xBEP should also be an option.