16 yr old son going through tx for Nasopharyngeal Carcinoma

GarrettsMom

Hi.  My 16yr old son is going through tx for NPC, He is finishing up his 3rd round of 5day chemo tx (Cisplatin and 5FU).  After this, he will start a combination of radiation and chemo.  Can anyone here relate? Want to know what kind of side effects we will be facing.  Thanks

wmc

Welcome to the H&N Group

Welcome to the group, but also very sorry you need to be here for your son. Mine was of the lartnx and only surgery did not have chemo or radiation, so the others will answer more of your questions that went through NPC and questions about chemo and radiation. My best advice is not to google as you get more wrong information to easy. The side effect will effect persons so different. Some never have many and some get most all of them. With him being on round 3 of 5 then he will do a combination they are going at his aggressively. Do you have any mor information that might help answer your questions better. Did they say what stage of give you Numbers like T1; N0; M0; as this will give more information. Was he HPV+ or They might never have said.

At the top of the posts there is a Superthread [read only] http://csn.cancer.org/node/261072 here is a link to get there easier and it has lots of terms and answers that will help.

Let me first say this is beatable and many here have already. It is a very rough road and will test him as well as you. Some side effects can be hard, but it time they will go away. Once he is done with the Tx he will still be cooking [meaning it is still working on the inside] for several weeks. He won't start to feel much better for several months after. The recovery is not in days and weeks, but weeks and months and some even over a year. You will have to just go one day at a time and don't worry about yesterday, today is what matters to get through. As his mother you will feel his pain, and not be able to do much but be there. This is very hard on caregivers, so each day you will need to set some time just for you. Head and neck treatment is said to be the second worst there is, but it has great results. Not trying to scare you as I know you already are. Just trying to be honest so you will have a better understanding. The main thing to remember is He can beat this, and will. It is a rough road, but it does get better and he will come through this. At his young age he must be really scared and understandable. Never give up, and just take one day at a time. I will add you to my prayer list and keep your family in my thoughts.

Bill

BarryChen1010

Welcome and sorry you have to

Welcome and sorry you have to be here. I had NPC also and just three weeks after treatment. I experienced nausea from chemo and Zofran helped. I also experienced every bad skin burn around my neck, but lotion can really help. One thing you may pay attention is to discuss carefully with the doctor where the radiation will hit on the skin and put lotion all there from beginning. I missed that part and later we found some missing area which led almost my whole neck got peeled. After that Vaseline helped. Also I had mouse soar, throat soar and hard to swallow. There are a lot of discussion on them in the superthread which you can find in first page of H&N forum. Also everyone may be different and your son may experience not same, but the people here will definitely help like what I learnt during my treatment.

Wish the best

Barbaraek

I'm so sorry

that your son is facing this disease. My husband finished treatment about a month and a half ago for NPC (stage 4). The radiation was completed 7/17, and last chemo 8/30. The good news is that we just had his post treatment scan and the tumor is gone...nada! So there is hope. Please make sure your son knows this.

The chemo will cause nausea, fatigue, and mouth sores. Radiation will cause fatigue, mouth sores, and burned skin inside and outside the area being radiated. For mouth pain and sores (mucositis) look at old messages by putting keywords in the search bar for messages. Different things will work for different people. It's important that he keep swishing and spitting the water, baking soda, salt solution to clear the mucus and keep his mouth moist. Hydrate as much as possible! Keep swallowing! Even if you end up needing a feeding tube for a while - keep swallowing just to practice.

Radiation burns are cumulative - it's like going out without sunscreen for many consecutive days. Different lotions/potions are available to help with the skin to keep it from breaking down. We used aquaphor, but when the sores got weepy and yucky...the best thing for us was Silvadene cream, which is what they use with burn patients.

 

Make sure he receives adequate pain medication. This is a nasty, nasty treatment. Same for nausea medication - there are lots. If the first kind doesn't work, ask them to try something else. Remember that we are here for you and your son. Please ask questions - we'll be available to help. And we'll all be pulling for you to win this fight.

Barbara

Hondo

NPC

 

Hi Mon Welcome to CSN H&N

 

It is hell for someone old to get this stuff but even worse when it is someone so young like your son. I had NPC and it is not easy going through the treatments, the one most important thing he will need is your time, support, and love. Being he is so young he should be able to recover fast, but please understand we are all different. Somewhere in the middle of his treatment you might see a lot of anger and pulling away, that is how it was for me the first time, just be there when he needs. On long term side effects he may have very few or none at all, but that depends on his body and how it heals. For me most of the side effects did not start until 8 years after my treatment. For now hand in there with him and please come back and let us know how he is doing.

 

PS: Prayer is very important get as many people praying for him as you can, there is tremendous power in pray that none of us fully understand.

 

 

 

God bless and be with you both

 

Tim  

 

MrsBD

Welcome

Wow. Sixteen is so young to go through this. I'm glad you found this site.  Most of us are older, but our treatments are similar. We will help you with advice and support whenever you need it. There is a young survivors group on this site which your son might find is a safe place to vent when the going gets tough. As a mom and former high school teacher,  I would really recommend it.  We can address other issues as they occur. One bit of advice, with colder weather on the way, you might want to get a cold air vaporizer for your son's room to help with dry mouth and swollen tissues. I will be praying for your family. 

sammydiego

HPV 16,stage lV

Was told for sure on jan25,this year and had finally scan two weeks ago.I kept a journal and worte how I felt and what was going on with me.Got harder to do as time went on,but helped me see my progress..A lot will change in how simple things will be hard to do.Need to stay positive as you can as does he.The worse part for me was not  knowing how i would react to the test or procedures.Can say enought how much this site helped me! If there is anyway I could help you with questions feel free to ask at anytime.I try and check here when I can.Wish all the best and ask for help ,its there for you. 

BarryChen1010

Proton

Also, I am not sure which radiation your son will have. Typically IMRT will be used to treat NPC, but some doctor also recommends Proton Therapy, which has less side effects (especially long turn) and highly recommended for children. You may ask your doctor whether this technology is suitable for your son's case. Remember this is just for sharing info and not everyone can suit for Proton and doctor's recommendation is important.

rcaulder

Prayers

Prayers for your family. The side affects hopefuly should be short term . During treatment we all have oral issues. Mucositis etc. Most have some salivary dysfunction. This should return with time. You may want to talk with your radiology Dr and a dentist about possibly teeth guards during radiation. Flouride trays are also important. Radiation can damage teeth.

lifeisDHA

I am so sorry to hear this

For what I know the only permenant side effects for my boyfriend are tinnitus, so far dry mouth but saliva does come back slowly. He still has some fatigue but the strength is coming back slowly too.

You boy is so young he will recover much faster. I hope the best for him.

 

avisemi

I'll keep Garrett and you in

I'll keep Garrett and you in my prayers. My husband was 37 when diagnosed with NPC last year and the doc said his "young age" will help a lot in the recovery. Well, im guessing Garrett will have even more luck then! Others have given great advice.  I'll add to help him find the emotional support he needS to go through this. Yes, you and your family will play the biggest role here but think if there are others that could play a role. A group? A therapist? A faith leader? A friend? is he going to school while in treatment? 

Mom16

My son also has

My son also has nasopharyngeal carcinoma and is 16. We have just finished our first round of chemo. He has been a little sick, but his pain has seemed to let up some and he is sleeping better. His neck swelling has also went down some. Any advice you have would be greatly appreciated. My thoughts are with you and your son.