Learn me chemotherapy.

Well, the results are in. My g/f's 7yr old son has a gene cell tumor pressuring the pituitary gland.

First symptoms were due to testosterone (Mom: Why are you scratching you crotch so much? Logan: Because my hair itches.), and problems with urination (previously toilet trained kid started wetting the bed again).

Long story short, the increased testosterone is because of the tumor, and so was the bedwetting. I can't recall the hormone's name at the moment, but it's the one that tells the body that you don't have to pee at the moment. We actually got lucky..the tumor hasn't yet damaged the part of the pituitary that tells the body that it's thirsty, so he's not dehydrated.

He had his port installed today. He's not happy about it. Grandma (her mom) took him home this evening because the Docs won't let me take him to the appointment Tuesday morning (G'ma being family, and me just being the "boyfriend", of course. Ugh.)

Any advice from any of y'all that have lived through this? How to keep the port clean? How to fight the nausea (he's 7! No dope!) long enough to get him to eat anything? Whether or not this E36 M3 actually works, or just prolongs the death process?

Thanks in advance for any good wishes anyone sends..but I'm really looking for hard info here. Please, please, please-give me something I can work with.

Zofran is magical when it comes to nausea. OTC dramamine is good stuff too. Also look into phenargen and something called Vistoril (SP?).

Sorry to hear about the kid man, that REALLY sucks. On the plus side of things, kids are pretty stinkin hearty and brush off things that would take us older types straight off. Case in point, my newborn basically slept through his circumcision- you bring that crap anywhere near me, and i'm running for the hills.

My mom is a retired ER nurse and has been through chemo three times now. She still has her port in at the moment

I'm sure she can walk you through any questions you might have, if you want, PM me and I'll give you her E-mail address.

Shawn

My son went through 2 years of chemo and radiation starting at 18 months. He's 22 years old now, and drives an RSX

Side effects will happen. Do your best to manage them. He will feel like E36 M3 and act like it, but I think it's important not to over react, or spoil him. It will make it easier for all of you. Keep him hydrated, and when he does eat, take advantage of it (we found a way to make food as fatty and filling as possible). My son spent a lot of time in hospital, but was in for a full month halfway through his treatment because he was dehydrated and malnourished. We did our best, but you can only do so much when a kid won't eat. You'll see what I mean.

Likewise, if you have any questions, don't hesitate to PM.

National Cancer Institute Here's a good place to start, but it's easy to get overwhelmed. I've worked in a cancer center for the last eleven years and another 10 years in health insurance...

As far as port care - you should get written instruction from the center - the center may do a demonstration with a doll to show you guys. When it comes to nausea, there are some good meds for it, but if he's not allowed, some of the sea sickness wrist bands or OTC meds are ok (check with his doc if OTC stuff is ok to use). Ginger pills can be helpful - some patients find peppermint candy or root beer candy can help.

Medicine has advanced a long way when it comes to childhood cancers. The overall stats are quite a bit better for a cure than adult cancer - but the honest answer depends on his specific cancer, its stage and treatments available. Stats are relevant for populations. Not so much on the individual level. There is a lot of support out there for childhood cancers.

Oh and mom is in crisis mode - shock, disbelief, fear, anger, the works. PM me if you want more info or resources (I have a book coming out later this year - working title is the insider's guide to surviving cancer).

Tom

I am sorry to hear about the kid.. that just sucks to be so young and have that happen. Really sucks that you can't "help" because you are only the boyfriend.

Hey guys, didn't mean to leave y'all hanging..just busy over here. They tested the port today (Tue) , ran some saline, and then some synthesized hormones to get him balanced up before they start his first chem treatment on Wed. They decided to leave all the tubing connected (I'm hoping like hell he doesn't roll over on his chest tonight), since his first round of treatment is the day after this test. They've also decided they need to admit him to the hospital for the first round (Wed/Thu/Fri) to insure there's help if he turns out to be allergic to any of it.

Thanks for the information, everyone..we're just starting this process, I hope that y'all that have been through this won't mind a PM a little further down the road.

Keeping you in my thoughts, poor little guy. Hope those full recovery stories give you hope.

He's getting something more severe than I got, that's for sure. I had Promethazine for nausea, which was good.

It's survivable, and the odds are good. Good Luck!

Yeah, I know you wanted technical stuff, but I can't resist offering my best wishes and hopes for you all. Good luck, and good medical science to you.

friedgreencorrado wrote: ...He had his port installed today. ... Any advice from any of y'all that have lived through this? How to keep the port clean? How to fight the nausea (he's 7! No dope!) long enough to get him to eat anything? Whether or not this E36 M3 actually works, or just prolongs the death process?.

My wife was diagnosed with Breast Cancer 1 year ago. As part of her treatments she got Chemo.

So first thing Port.... Ports are actually pretty cool. She has had hers in for 9 months and works like charm. She shows up at Chemo and the nurses plug in (go through the skin) and do all the work. When she is done they clean/unhook and put a tiny bandaid over the port. This is what they call "accessing". My wife and I do nothing. She knows it is there, but it otherwise needs nothing from us. So I would expect the same from you.

Now at one point during Chemo my wife got an infection and was in the hospital for a week. While in the hospital they used her port for administer all her IV needs. When she left she needed IV antibotics. They set us up with home nurse to help administer these. So what happened is for a week I would actual plug into her port, clean and give her IV anti-biotics twice a day. So I got very good and cleaning and plugging into the port. During that time she stayed "accessed" so there was small hose coming out of her port that entire week. The nurse did the job of re-accessing evey 4 days. The only trick was to not let that hose get caught on something that could rip the needle out of her port. Once she was off the 2 per day IV we went back to normal zero effort.

Now getting sick.. My wife had 2 types of chemo for 4 rounds each. First was a 3 week cycle where she got Chemo monday and then recoved. Then got it again 3 weeks later. Next treatment was 2 week cycle.

For her Monday was fine. They pumped her full of enough drugs in the IV that she could get the chemo and feel fine. At least for a while. By Wedensday she usally felt very bad. Mostly very tired, some nausea, but that could be controlled by prescrption drugs. These of course had their own side effects. Best to stay in close contact with oncologist about these. Their job once they set-up a treatment plan is to mostly combat the side effects and watch out for reactions or potential infections.

Seems that it is pretty common to be hospitalized at least once during chemo for some form of infection be it even a cold. The body is just very weak and can't fight off much.

Anyway extreme fatigue was my wifes worst problem. Laying in bed all day was hard and a soon as she started to feel almost 80% it was time for another round. By the very end she was so worn out from the months of treatmeant she was ready to give up on any more.

So the hard part will be deal with the fatigue of it and mental drain. Yes she lost her hair, but that is not a big deal when you are in the thick if it.

Too early to tell if it worked, but my wife's treatment plan involved surgery first to remove the cancer, chemo capture any that might be in the blood stream, then follow-up by radiation in the affeected area to ensure any not revmoved by surgery was killed off. Results? Too early to know for sure.

Oh... Good luck and best wishes. Cancer sucks. PERIOD. Not much you can do but suck it up. Watching my wife go throught it was hard. I can't imagine watching a child have to deal with it. It would break my heart.

Best advice is to stay as positive as possble. For both you and you child. At 7 years old they can't comprehend all that is happening, but will respond to the adults around them. Also stay in close contact with the doctors. Call then when ever something seems out of the ordinary.

BTW.. saw it is g/f 's son. So not related to you, but your g/f will need you now more then ever. It will be really hard on her and she will need someone to support her emotionally. She may not seem rational at times, but just go with it. Be understanding. As a caregiver it is about all you can do.

I was diagnosed with Non-Hodkins Lymphoma in early April 2010. I had a port implanted in late April and started chemo in early May. I had 6 chemo treatments, one every 3 wks for 18 wks. The chemo treatment itself was not bad however I'm 57 not 7. Each treatment took about 6 hrs to drip the 1st day, then had to wear a pump for 36hrs. The chemo makes you not want to eat or drink as nothing tastes "right". My advice is have him drink as much as he can or he'll get dehydrated and constipated and they'll have to give him additional fluids via the port. Ensure helps, especially with ice cream. ( I stimulated my appetite by watching the Food & Travel Channel). My chemo was finished in early Oct and by Thanksgiving I could somewhat taste food again. Today I feel 10 years younger and wonderful compared to this time last year. I still have regular CAT and PET Scans for health maintenance reasons. Prayers and the God's Grace got me through it along with a loving family and church family. Godspeed!

http://www.childhoodbraintumor.org/CNS_GCT_Article_June_2007Finlay.pdf

This guy has published quite a bit on treatments for germ cell tumors

This is not chemo info, it is surgery info. If surgery is needed, ask if removal through the nose is an option. Removal of pituitary/brain tumors through the nose is supposed to be a less invasive method, and particularly good for kids.
http://www.sciencedaily.com/videos/2005/0803-breakthrough_brain_surgery.htm
http://www.sciencedaily.com/releases/2010/04/100401130236.htm
http://www.sciencedaily.com/releases/2008/08/080820162951.htm
http://videos.howstuffworks.com/medialink/3272-remove-brain-tumors-through-your-nose-video.htm
http://www.physorg.com/news/2011-01-ua-surgeons-brain-tumors-nose.html

(Traditional methods or removal required cutting open large bits of the skull, often in the face area.....those areas are still changing shape with kids, so cutting there has more chance of problems with kids than with adults.)

FGC, sorry to hear about this. I don't have anything to add to the discussion other than to be impressed by the membership of this forum. Tell the little guy that there are a lot of people all over the country rooting for him.

I can't add any info but my ex-wife was diagnosed with Hodgkins when she was 17. She said the radiation treatments were way worse then chemo.

We'll all be praying.....

FGC, I hope you're at Children's Health Care of ATL at Emory. We did a 10 month tour there with our son. Great people, Doctor's , and especially the nurses. Please PM me if you and your friends need anything, I mean it. We were lucky to have close friends through our difficult journey. Thoughts and prayers go out to your GF's son.

Everyone, thanks so much. There's a lot of useful stuff here. I'd reply to everyone, but at the moment, I'm so tired of talking about cancer that I could pull my own hair out. Just because I'm not answering, it doesn't mean I'm not listening-and taking your advice (and your good wishes) to heart. Thanks again. Best forum on the web.

If you can stand one more post: I know zip about chemo but I wish the little guy all the best.

Okay..home from first treatment today. So far, so good..but I guess I shouldn't expect the first treatment to suppress his appetite (or kill the berkeleying tumor) so soon.

Question: They've given us a bottle of liquid Pentazine, and some solid Zofran tablets.

Situation: we ordered pizza, he was originally stoked about it, but decided not to eat after taking the Pentazine (Mom's already scared about whether or not he'll feel nauseous..and of course, wants to make him comfortable as possible). We're seriously worried about keeping his weight up in the future..he's not a very big guy in the first place. We almost laughed when the docs started talking about emergency injections of cortisone (his pit gland is no longer producing it, we're hoping the pills do the job). They started to talk about when to inject into fat, and when to inject into muscle.

Now we gotta find some fat on the boy.

Breaks my heart, really. SWMBO did a great job of teaching the boy to stay away from junk food/sodas/etc. And now that we need to put some weight on the boy (like I said, first treatment, he's not really sick yet), he doesn't want to hear it.

Sorry to bring back a dead thread, but we've got good news over here. Tumor markers are damn near non-existent, MRI shows a size reduction of %60. Next chemo session is Monday. No infection problems yet, he's on some seriously strong antibiotics, and on Neupogen too. Still amazes me that so many of these compounds (he's still got hormone problems because it was on the pituitary) can be concocted artificially.

Thanks for the good wishes, everyone. Compared to the kids we've seen in the waiting rooms (leukemia sucks), we've been very lucky so far. Risk of infection is so low the docs actually let us keep our dogs. So here's a pic of a boy and his dogs.

Seriously good news so far.

glad to hear he is doing well so far

Glad to hear about the good news. Keeping my fingers crossed.