Nasopharyngeal Carcinoma

AgentJester

Help!  My 14 year old son wa diagnosed 3/19 with Nasopharyngeal Carcinoma.   He has had his first round of chemo ( Cisplatin and 5fu).  His treatment plan consists of a total of 5 chemos and 7 weeks radiation.   THere will be 3 rounds of chemo every 3 weeks.  The last two rounds of chemo will be combined with the radiation.

I have so many questions so please let me know anything you may feel is important, even if I do not specifically mention it.  What kind of side effects can we expect and in your experience did anything help?

Radiation or Proton therapy?  I have read that proton therapy should have less side effects,  however,  I am worried about his state of mind if we end up doing proton therapy because we would have to leave home during that time.  He had a difficult time being away from home during the first round of chemotherapy (5 days in the hospital).

I am also totally confused about all of the scans.  The 1st CT Scan (full body) findings stated the issue had not mestatasized.  Then a PET Scan showed a lesion in his pelvic area.  X-Ray no findings.  MRI large area of edema which means possible metastasis!  Really I don't understand how each scan seems to say something different.

Just please help me understand what is going on.  What questions to ask the doctors etc?  I am having a difficult time being strong but now add confusion and now I feel like I am crumbling!

 

 

phrannie51

Hi AJ....and welcome to

to this great forum.  You'll find a lot of caring, support, and knowledge here.  I'm always feel so badly when I'm hearing of a youngster getting head and neck cancer.....

I also had NPC.....diagnosed in April of 2012, and finished treatments in August, 2012.  My treatment plan was somewhat like your son's....just backwards.  I had Cisplatin and 35 rads first, then the Cisplatin and the 5FU together after rads were over.  There are the "normal" side effects from radiation....dry mouth, and loss of taste.....seems everybody gets hit with those to different degrees.  For me the 5FU was the worst as far as side effects...photo-sensitivity, bad bad mouth sores which made eating impossible.  I was 61 tho, and a youngster might get through it easier. 

We have a thought pattern here....."It ain't cancer till somebody in the know says it is"....there are plenty of folks who have had false positives......so breathe and try to hold the worry down over the edema in his pelvic area.....it may very well be something totally unrelated to cancer.   Are they thinking about going in and checking his pelvic area, or are they going to do chemo first and then check it out?

p

HAWVET

phrannie51 said:

Hi AJ....and welcome to

to this great forum.  You'll find a lot of caring, support, and knowledge here.  I'm always feel so badly when I'm hearing of a youngster getting head and neck cancer.....

I also had NPC.....diagnosed in April of 2012, and finished treatments in August, 2012.  My treatment plan was somewhat like your son's....just backwards.  I had Cisplatin and 35 rads first, then the Cisplatin and the 5FU together after rads were over.  There are the "normal" side effects from radiation....dry mouth, and loss of taste.....seems everybody gets hit with those to different degrees.  For me the 5FU was the worst as far as side effects...photo-sensitivity, bad bad mouth sores which made eating impossible.  I was 61 tho, and a youngster might get through it easier. 

We have a thought pattern here....."It ain't cancer till somebody in the know says it is"....there are plenty of folks who have had false positives......so breathe and try to hold the worry down over the edema in his pelvic area.....it may very well be something totally unrelated to cancer.   Are they thinking about going in and checking his pelvic area, or are they going to do chemo first and then check it out?

p

Welcome

This is a great place to have answers to your concerns.  Welcome aboard.  There are several here who were afflicted with NPC.  It was 16 years ago in April that I completed my last radiation treatment.  I followed up with some kind of direct radiation implant a couple of months later.

I do not understand the scans, but during my time, I just had the head scan and went into treatment.  I am at a loss with all the technical terms used today but I am sure you will get multiple responses.  The plus I can add is that before you know it, treatment will be over and your son will be on that road towards recovery.

Aloha!

Guzzle

HAWVET said:

Welcome

This is a great place to have answers to your concerns.  Welcome aboard.  There are several here who were afflicted with NPC.  It was 16 years ago in April that I completed my last radiation treatment.  I followed up with some kind of direct radiation implant a couple of months later.

I do not understand the scans, but during my time, I just had the head scan and went into treatment.  I am at a loss with all the technical terms used today but I am sure you will get multiple responses.  The plus I can add is that before you know it, treatment will be over and your son will be on that road towards recovery.

Aloha!

Hi from UK

I cant imagine how you must feel with your son being unwell. I start chemo/rads in a few weeks. I have found great support and practical advice here. Will be thinking of you both.

AgentJester

phrannie51 said:

Hi AJ....and welcome to

to this great forum.  You'll find a lot of caring, support, and knowledge here.  I'm always feel so badly when I'm hearing of a youngster getting head and neck cancer.....

I also had NPC.....diagnosed in April of 2012, and finished treatments in August, 2012.  My treatment plan was somewhat like your son's....just backwards.  I had Cisplatin and 35 rads first, then the Cisplatin and the 5FU together after rads were over.  There are the "normal" side effects from radiation....dry mouth, and loss of taste.....seems everybody gets hit with those to different degrees.  For me the 5FU was the worst as far as side effects...photo-sensitivity, bad bad mouth sores which made eating impossible.  I was 61 tho, and a youngster might get through it easier. 

We have a thought pattern here....."It ain't cancer till somebody in the know says it is"....there are plenty of folks who have had false positives......so breathe and try to hold the worry down over the edema in his pelvic area.....it may very well be something totally unrelated to cancer.   Are they thinking about going in and checking his pelvic area, or are they going to do chemo first and then check it out?

p

Thanks for responding.  They

Thanks for responding.  They are going to continue with chemo first then check it out.

AgentJester

HAWVET said:

Welcome

This is a great place to have answers to your concerns.  Welcome aboard.  There are several here who were afflicted with NPC.  It was 16 years ago in April that I completed my last radiation treatment.  I followed up with some kind of direct radiation implant a couple of months later.

I do not understand the scans, but during my time, I just had the head scan and went into treatment.  I am at a loss with all the technical terms used today but I am sure you will get multiple responses.  The plus I can add is that before you know it, treatment will be over and your son will be on that road towards recovery.

Aloha!

Hawvet...16 years..YAY...that

Hawvet...16 years..YAY...that is so encouraging.  We definitely can't wait until we are on the road to recovery. 

Thank you

AgentJester

Guzzle said:

Hi from UK

I cant imagine how you must feel with your son being unwell. I start chemo/rads in a few weeks. I have found great support and practical advice here. Will be thinking of you both.

Guzzle good luck on your

Guzzle good luck on your journey.   I am going to keep an eye out for your progress.  Thank you for sharing. 

debbiejeanne

i'm so very sorry your son is

i'm so very sorry your son is so ill.  i'm also very glad you've found this site.  you will get lots of information from people who have been thru it.  i had cancer of the larynx so i'm not familiar with that type of cancer except what i've learned here but i'm sure others will chime in to help.  saying lots of prayers for your son and your family.  come here whenever you need info, have a question, need to vent, whatever, we will be here to help.  please keep us posted on your son's progress. 

God bless you,

dj

 

KTeacher

Welcome

Welcome to our group, and stay in touch.  The  Superthread at the top of the topics has information that will help.  You will look through it often.  I am glad that you are being pro-active for your son, so sorry that you have to go through this.  I have a cap that says 'One Tough Chick,'  He will get through this but it is a fight.

donfoo

Welcome to CSN

HI,

So glad you found this site as it is a rock to plant yourself to while experiencing the new world of cancer survivorship. As you have already seen, it is an active site and your responses are from folks often times with the exact same diagnosis and learn of the similarities and differences in treatment plans.

First, I am so sorry to hear about your son being diagnosed with cancer. It is so hard to accept that someone so young now faces hurdles so large so young. Fortunately, he has his family and medicine behind him and he will get through this with your help.

The treatment plan of chemo first on a three week cycle is common as is the radiation plan for 7 week after that. Sometimes chemo is done with the radiation, sometimes not. Sometimes the chemo during rads is given once a week in lower doses, sometimes it is given in larger less frequent dosing.

Every cancer patient is unique and thus different criteria the doctors consider for treatment planning. In your son's case, his age is a big factor. Side effects are unavoidable and the age of the patient factors in. There are many other factors that are considered so the actual treatment plan can vary from patients that may have the exact same diagnosis.

Proton is newer and much less available. The general benefit is can be more targeted and thus have less side effects and collateral damage. My general sense is it is recommended in situations that have non-typical circumstances such as recurrence where the rad field has to be mapped more precisely or target area is near critical structures like the jugular or nerves.

5FU is generally administed over a 5 day period, starting on day one with the infusion of the cisplatin. Many have portable packs to allow the patient to go home on the day of infusion and return on day 5 to have the pack removed.

Scanning technologies vary in their strengths. MRI, CT, PET/CT are able to pick up things differently. That is why one shows something differently than others. Let the professionals do their job and interpret the data and translate that for you. Trying to understand the raw data is only going to confuse and worry you more than it needs to. There are so many other things you can put your energy to make your son's treatment as comforting as possible.

My mantra is always the same. Say it a lot and just do it and he will get through it as best as is possible.

HYDRATE - NUTRITIUON - PAIN MANAGEMENT.

Lots of fluids to avoid deydration.

Eat plenty of anything to avoid weight loss.

Take the narcos to feel comfortable, no need to suffer more than necessary.

Good luck and stay close. Don

AgentJester

debbiejeanne said:

i'm so very sorry your son is

i'm so very sorry your son is so ill.  i'm also very glad you've found this site.  you will get lots of information from people who have been thru it.  i had cancer of the larynx so i'm not familiar with that type of cancer except what i've learned here but i'm sure others will chime in to help.  saying lots of prayers for your son and your family.  come here whenever you need info, have a question, need to vent, whatever, we will be here to help.  please keep us posted on your son's progress. 

God bless you,

dj

 

Thank you, I will definitely

Thank you, I will definitely keep you all posted.  God Bless

AgentJester

KTeacher said:

Welcome

Welcome to our group, and stay in touch.  The  Superthread at the top of the topics has information that will help.  You will look through it often.  I am glad that you are being pro-active for your son, so sorry that you have to go through this.  I have a cap that says 'One Tough Chick,'  He will get through this but it is a fight.

I did't notice the

I did't notice the Superthread thank you for bringing it to my attention. 

AgentJester

donfoo said:

Welcome to CSN

HI,

So glad you found this site as it is a rock to plant yourself to while experiencing the new world of cancer survivorship. As you have already seen, it is an active site and your responses are from folks often times with the exact same diagnosis and learn of the similarities and differences in treatment plans.

First, I am so sorry to hear about your son being diagnosed with cancer. It is so hard to accept that someone so young now faces hurdles so large so young. Fortunately, he has his family and medicine behind him and he will get through this with your help.

The treatment plan of chemo first on a three week cycle is common as is the radiation plan for 7 week after that. Sometimes chemo is done with the radiation, sometimes not. Sometimes the chemo during rads is given once a week in lower doses, sometimes it is given in larger less frequent dosing.

Every cancer patient is unique and thus different criteria the doctors consider for treatment planning. In your son's case, his age is a big factor. Side effects are unavoidable and the age of the patient factors in. There are many other factors that are considered so the actual treatment plan can vary from patients that may have the exact same diagnosis.

Proton is newer and much less available. The general benefit is can be more targeted and thus have less side effects and collateral damage. My general sense is it is recommended in situations that have non-typical circumstances such as recurrence where the rad field has to be mapped more precisely or target area is near critical structures like the jugular or nerves.

5FU is generally administed over a 5 day period, starting on day one with the infusion of the cisplatin. Many have portable packs to allow the patient to go home on the day of infusion and return on day 5 to have the pack removed.

Scanning technologies vary in their strengths. MRI, CT, PET/CT are able to pick up things differently. That is why one shows something differently than others. Let the professionals do their job and interpret the data and translate that for you. Trying to understand the raw data is only going to confuse and worry you more than it needs to. There are so many other things you can put your energy to make your son's treatment as comforting as possible.

My mantra is always the same. Say it a lot and just do it and he will get through it as best as is possible.

HYDRATE - NUTRITIUON - PAIN MANAGEMENT.

Lots of fluids to avoid deydration.

Eat plenty of anything to avoid weight loss.

Take the narcos to feel comfortable, no need to suffer more than necessary.

Good luck and stay close. Don

Thank you, great advice

Thank you, great advice because I have been wasting much energy trying to figure things out.  We will definitely borrow your mantra.

God Bless

CivilMatt

NPC

AgentJester,

Welcome to the H&N forum, I am sorry for your son’s condition.

I am sure the type of radiation he will receive is dependent on how concentrated the cancer is.  It would have been nice if they could have focused on one spot (for me), but they needed to radiate a large enough area to kill the cancer cells.

Treatment can be difficult, but I believe his age will bode well for his recovery.

The others have mentioned some side effects and step to take to help.  Just know, this can all be over in a few months and you can both move on, happily and  cancer free.

Matt

PJ47

I am sorry that you and your son are going through this.

This is a great forum for information and support.  Please learn as much as you can about the radiation treatment options. In my understanding, for developing children, proton therapy is often recommended due to less collateral damage to the surrounding organs (brain, brain stem, spinal cord etc.)  and fewer long term side effects.  With someone who is young that is a great consideration even though it would mean being away from home.  

Each type of scan has strengths/weaknesses.  The PET picks up inflamation and very small lesions.  Hoping his pelvic lesion is not cancer, the only way to know is a biopsy I believe.  

I cannot imagine how hard this must be for you, allow some crumble time so you can be strong when you need to.  Know you and your son are not alone and have many who are pulling for you.

 

PJ

Kent Cass

So sorry...

I watched a You Tube multi-part 2008 seminar with leading H&N Drs from different nations about a year ago. First, concurrent radiation and chemo is important for NPC, according to the lady Dr from the USA- she stated it as indisputable fact that it has been proven so for NPC. So, chemo combined with the rads is a good thing your team is doing.

As for the scan confusion- Pet Scans are to light-up areas where C exists, due to a reaction between the isotope injection and sugar water taken. Cannot comment on the MRI, but if a Pet Scan shows a possible issue- further investigation w/biopsy sounds logical. CT scans tend to be a lesser quality C scan, though I have also had many over my 5 years of survival.

Unknown Primary? Such was the case with me, and so they had to apply the rads in 20 places/session. If the Primary is known, then they can focus more on a specific area(s).

With your Son being his age, seems to me a major concern should be his teeth, as the rads will be applied to that area, and there are a number of side effects for down the road. He should be already starting on flouride trays, according to sources on the Superthread, and the Dr I saw at the U of Iowa. The upside is that at his age the gum tissue, etc., that treatment takes away from him may come back as his body grows and develops. Let us hope and Pray such happens. He has to get a great Dentist on the team ASAP- one who is familiar with the side effects of H&N treatment.

The medication angle of this might be a bit tricky. A young person taking strong pain meds might be an issue you should talk to your Drs about. Priority #1 is getting rid of the C, but a side effect can include dependence on pain meds. Thing is- meds to combat the pain/discomfort is important, as it greatly reduces the stress the body is dealing with, and most of us think that stress reduction helps with the healing.

I Pray the Lord be with your Son thru this ordeal, and you. For a kid his age, the mask and all can be scary, and what it physically does to the mouth and neck can get ugly; however, it is for you to comfort him with the fact that many others have gone thru the same ordeal, handled it, and have survived for many years afterwards. He will survive this, Sir, as we all do the first bout with C. Remove all doubt that he won't survive from his mind, because it's fact he will.

Believe

kcass

 

 

 

DCH21

Kent Cass said:

So sorry...

I watched a You Tube multi-part 2008 seminar with leading H&N Drs from different nations about a year ago. First, concurrent radiation and chemo is important for NPC, according to the lady Dr from the USA- she stated it as indisputable fact that it has been proven so for NPC. So, chemo combined with the rads is a good thing your team is doing.

As for the scan confusion- Pet Scans are to light-up areas where C exists, due to a reaction between the isotope injection and sugar water taken. Cannot comment on the MRI, but if a Pet Scan shows a possible issue- further investigation w/biopsy sounds logical. CT scans tend to be a lesser quality C scan, though I have also had many over my 5 years of survival.

Unknown Primary? Such was the case with me, and so they had to apply the rads in 20 places/session. If the Primary is known, then they can focus more on a specific area(s).

With your Son being his age, seems to me a major concern should be his teeth, as the rads will be applied to that area, and there are a number of side effects for down the road. He should be already starting on flouride trays, according to sources on the Superthread, and the Dr I saw at the U of Iowa. The upside is that at his age the gum tissue, etc., that treatment takes away from him may come back as his body grows and develops. Let us hope and Pray such happens. He has to get a great Dentist on the team ASAP- one who is familiar with the side effects of H&N treatment.

The medication angle of this might be a bit tricky. A young person taking strong pain meds might be an issue you should talk to your Drs about. Priority #1 is getting rid of the C, but a side effect can include dependence on pain meds. Thing is- meds to combat the pain/discomfort is important, as it greatly reduces the stress the body is dealing with, and most of us think that stress reduction helps with the healing.

I Pray the Lord be with your Son thru this ordeal, and you. For a kid his age, the mask and all can be scary, and what it physically does to the mouth and neck can get ugly; however, it is for you to comfort him with the fact that many others have gone thru the same ordeal, handled it, and have survived for many years afterwards. He will survive this, Sir, as we all do the first bout with C. Remove all doubt that he won't survive from his mind, because it's fact he will.

Believe

kcass

 

 

 

Hi there AgentJester !
I just

Hi there AgentJester !

I just wanted to add a comment or two. I too have battled NCP.

Forgive me if this post comes across as being all about me, that is not my intention. I would just like to relate to you a bit of my story.

 My case was so bad that the first 2 ENT doctors I saw turned my case down. Talk about kick in the morale  

Anyway, I finally found someone to treat me. He put together a great team. I too looked into Proton radiation. After talking to my Radiation Oncologist,I went the regular route. I had 35 rad sessions and 7 Cisplatin sessions.

When it came time for me to have a Pet/CT scan after treatment was over, I was of course was  nervous. VERY NERVOUS !

A few days after the scan the Doctor called me in to discuss the scan. He was very candid with me. He said he was shocked that things turned out so well.  In fact he told me that 3 other Doctors in practice with him followed my case. They were also shocked.

 

 The tumor was completely zapped !

I post the above information only in hope that it gives you some peace of mind knowing that NCP is highly treatable.

Yesterday was my first year anniversary of being cancer free as my latest scan came back NED.

 

I will pray for your son and family.

 

Dennis

 

Guzzle

DCH21 said:

Hi there AgentJester !
I just

Hi there AgentJester !

I just wanted to add a comment or two. I too have battled NCP.

Forgive me if this post comes across as being all about me, that is not my intention. I would just like to relate to you a bit of my story.

 My case was so bad that the first 2 ENT doctors I saw turned my case down. Talk about kick in the morale  

Anyway, I finally found someone to treat me. He put together a great team. I too looked into Proton radiation. After talking to my Radiation Oncologist,I went the regular route. I had 35 rad sessions and 7 Cisplatin sessions.

When it came time for me to have a Pet/CT scan after treatment was over, I was of course was  nervous. VERY NERVOUS !

A few days after the scan the Doctor called me in to discuss the scan. He was very candid with me. He said he was shocked that things turned out so well.  In fact he told me that 3 other Doctors in practice with him followed my case. They were also shocked.

 

 The tumor was completely zapped !

I post the above information only in hope that it gives you some peace of mind knowing that NCP is highly treatable.

Yesterday was my first year anniversary of being cancer free as my latest scan came back NED.

 

I will pray for your son and family.

 

Dennis

 

Mask

Dennis glad you are doing so well mate.Jester I was concerned about mask fitting but actually found it very relaxing. Like some weird beauty treatment! I am awaiting chemotherapy / radiotherapy but there is so much good advice here. If I start before your son which is likely Id be happy to answer any questions I can so feel free. I think you sons age will really go in his favour. Regards, G.

Hondo

Hi Jester

 

Do the Proton treatment; it is by far better than the old style radiation treatment. My friend just finished doing Proton treatment and he just about walked away with hardly any side effects.

 

My NPC came back on me and I don’t want anyone to have to live through the night mare I have been through with radaition side effects, go with the Proton

 

I wish you both well

God Bless

Tim Hondo

AgentJester

Guzzle said:

Mask

Dennis glad you are doing so well mate.Jester I was concerned about mask fitting but actually found it very relaxing. Like some weird beauty treatment! I am awaiting chemotherapy / radiotherapy but there is so much good advice here. If I start before your son which is likely Id be happy to answer any questions I can so feel free. I think you sons age will really go in his favour. Regards, G.

Chemo Round 2

My son is currently undergoing round 2 of chemotherapy.   So far things are going well.   I do believe his age is a factor, although we are only in 2 days with this round he feels that it is not as bad as the first.

 

Where are you with your treatment? 

I really appreciate all of the advice and information that you all are providing.   Praying for strength and health for all.

AgentJester

Hondo said:

Hi Jester

 

Do the Proton treatment; it is by far better than the old style radiation treatment. My friend just finished doing Proton treatment and he just about walked away with hardly any side effects.

 

My NPC came back on me and I don’t want anyone to have to live through the night mare I have been through with radaition side effects, go with the Proton

 

I wish you both well

God Bless

Tim Hondo

So sorry this awful thing

So sorry this awful thing came back.  Thanks for the advice about proton therapy.

 

I pray for strength and health for you as well.