Squamous cell carcinoma of base of tongue also involving lymph nodes

tkred5

KTeacher said:

Police

He is a police officer and a big soccer (football) fan.

 

Ooohhhh--- lol, thought he

Ooohhhh--- lol, thought he played futbol for UK. No wonder I couldn't find him on UK futbol site

aemnoca

HPV

This is exactly what I was diagnosed with in Feb. I was HPV positive which is good if you can say that anything about cancer is good. The survival rates are significantly better if a person is HPV positive. Approx. 80% and up as opposed to approx. 37% if you are negative. Non smokers are usually HPV positive. 

has he had a PET scan yet? This will determine if it is localized or if the cancer is in other parts of his body.

please read my other posts "fingers crossed" and "first post treatment appt."

A good speach pathologist is a plus. Ask about one to be assigned prior to treatments is my recommendation. 

Mike

tkred5

aemnoca said:

HPV

This is exactly what I was diagnosed with in Feb. I was HPV positive which is good if you can say that anything about cancer is good. The survival rates are significantly better if a person is HPV positive. Approx. 80% and up as opposed to approx. 37% if you are negative. Non smokers are usually HPV positive. 

has he had a PET scan yet? This will determine if it is localized or if the cancer is in other parts of his body.

please read my other posts "fingers crossed" and "first post treatment appt."

A good speach pathologist is a plus. Ask about one to be assigned prior to treatments is my recommendation. 

Mike

No pet yet
Hi Mike, thank you for your response. The Dr. Is holding off on the pet scan until after he sees the dentist and has any required extractions. He'll then go in for a pet scan and position test so they can cast the mask he will have to wear during rad Tx. Could you tell me a little more about the need for a speech pathologist? This is definitely one thing the Dr. Did not mention.

TK

tkred5

Cisplatnin
Does anyone have experience with the chemo drug Cisplatnin? Ajax doesn't see the Medical Oncologist until next week.

KTeacher

tkred5 said:

Cisplatnin
Does anyone have experience with the chemo drug Cisplatnin? Ajax doesn't see the Medical Oncologist until next week.

Cisplatin

I had that lovely liquid last time.  Mine was weekly others had it once every 3 weeks.  You will want to make sure that he has his meds.  If you take the nausea meds at the first sign they will help.  Keep hydrated,  I had to go in for extra hydration.  I did not have a port, highly suggest it, my poor veins did not want to work the last few weeks and they still have a difficult time finding a vein for blood work and tests with contrast.  He will get through this.

tkred5

KTeacher said:

Cisplatin

I had that lovely liquid last time.  Mine was weekly others had it once every 3 weeks.  You will want to make sure that he has his meds.  If you take the nausea meds at the first sign they will help.  Keep hydrated,  I had to go in for extra hydration.  I did not have a port, highly suggest it, my poor veins did not want to work the last few weeks and they still have a difficult time finding a vein for blood work and tests with contrast.  He will get through this.

Port
Thanx KT-- the Dr. Did recommend having a port put in. Please forgive me for asking, but does chemo hurt while it is being done?

Also, are u a teacher? My brother and I both are teachers (coaches too).

TK

KTeacher

tkred5 said:

Port
Thanx KT-- the Dr. Did recommend having a port put in. Please forgive me for asking, but does chemo hurt while it is being done?

Also, are u a teacher? My brother and I both are teachers (coaches too).

TK

No hurt

I wondered the same thing about chemo, no, it doesn't hurt.  You sit in a room on a recliner and have a IV attached, usually a television, hopefully on a decent channel.  They pump in fluid and I believe Benadryl,, then chemo (and a nap) and more hydration.  You are there for about 4 or 5 hours.  I took a fleece blanket with me.  Snacks were available or you can take a cooler with your Ensure or Boost or Smoothie.

I am a retired teacher.  I have gone through too many battles with this beast than I want to recall.  I 'only' had radiation the first and second time, 1st was a lump on my upper lip, 1 inch of lip was removed, 50 stitches, 2nd time lump on neck, neck dissection, 3rd time I was having double vision doing one-on-one testing at school, ended up in optic nerve and I had to have my eye removed (that is why I use a large font!)  I had perineural invasion and spindle cell varient, rare and aggressive.  I returned back to school the first two times but retired when I had to have the eye removed.  I had chemo and radiation and it was a much longer recovery.  I had one more go around with a tumor at base of skull and nerve on cheek, Cyberknife took care of that.

tkred5

KTeacher said:

No hurt

I wondered the same thing about chemo, no, it doesn't hurt.  You sit in a room on a recliner and have a IV attached, usually a television, hopefully on a decent channel.  They pump in fluid and I believe Benadryl,, then chemo (and a nap) and more hydration.  You are there for about 4 or 5 hours.  I took a fleece blanket with me.  Snacks were available or you can take a cooler with your Ensure or Boost or Smoothie.

I am a retired teacher.  I have gone through too many battles with this beast than I want to recall.  I 'only' had radiation the first and second time, 1st was a lump on my upper lip, 1 inch of lip was removed, 50 stitches, 2nd time lump on neck, neck dissection, 3rd time I was having double vision doing one-on-one testing at school, ended up in optic nerve and I had to have my eye removed (that is why I use a large font!)  I had perineural invasion and spindle cell varient, rare and aggressive.  I returned back to school the first two times but retired when I had to have the eye removed.  I had chemo and radiation and it was a much longer recovery.  I had one more go around with a tumor at base of skull and nerve on cheek, Cyberknife took care of that.

Wow
My goodness, you are remarkable and an inspiration. And I like the large font -- I can actually read it without stretching it to the full size of my monitor. I read the post about "The List" of things Ajax will need. I'll have to see if I can find him an Ajax Futbol fleece snuggie . He might even wear it even though it's from his little sister. I will get him a little cooler too.

Guzzle

tkred5 said:

Wow
My goodness, you are remarkable and an inspiration. And I like the large font -- I can actually read it without stretching it to the full size of my monitor. I read the post about "The List" of things Ajax will need. I'll have to see if I can find him an Ajax Futbol fleece snuggie . He might even wear it even though it's from his little sister. I will get him a little cooler too.

Guzzle

Hi, Ajax ? Are you from the Netherlands? I have visited the land of crazy orange people many times. Just been walking on east coast and saw the ferry heading of to Holland. Let me know if I can help Im about a month out if treatment. Regards, Gary.

tkred5

Guzzle said:

Guzzle

Hi, Ajax ? Are you from the Netherlands? I have visited the land of crazy orange people many times. Just been walking on east coast and saw the ferry heading of to Holland. Let me know if I can help Im about a month out if treatment. Regards, Gary.

The States
Hi Gary,
Ajax is my brother (who was diagnosed last week). I'm his sister. He is a huge Futbol fan and Ajax is one of his favorite teams, Brasil too. We both live in the States. I'm still trying to get him to check out this site. I know it would do him good to talk with others who have been through this and I know for sure he would love talking Futbol with someone from the other side of the pond. I will pass on your experience with the crazy orange people to him-- maybe it will get him to check things out here. What team do you follow in the UK?

Guzzle

tkred5 said:

The States
Hi Gary,
Ajax is my brother (who was diagnosed last week). I'm his sister. He is a huge Futbol fan and Ajax is one of his favorite teams, Brasil too. We both live in the States. I'm still trying to get him to check out this site. I know it would do him good to talk with others who have been through this and I know for sure he would love talking Futbol with someone from the other side of the pond. I will pass on your experience with the crazy orange people to him-- maybe it will get him to check things out here. What team do you follow in the UK?

YNWA

LIVERPOOL F.C.!

aemnoca

tkred5 said:

No pet yet
Hi Mike, thank you for your response. The Dr. Is holding off on the pet scan until after he sees the dentist and has any required extractions. He'll then go in for a pet scan and position test so they can cast the mask he will have to wear during rad Tx. Could you tell me a little more about the need for a speech pathologist? This is definitely one thing the Dr. Did not mention.

TK

Duggie88

tk

I had the same thing. My little brother also helped me through my ordeal and we gained a closeness I didn't know existed.

Your brother has a bumpy road ahead and you may have to stop and change a tire or two. There are many co-drivers on this site and they are very willing to help you and your brother fuel up during the journey.

If I can do the trip, anybody can.

      Jeff

tkred5

Guzzle said:

YNWA

LIVERPOOL F.C.!

He's here

Guz, he's here-- he is going by Ajax FC !!!  thank you!!!

patricke

PILE ON

Hey TK,

I'm just chim'in in to pile-on to what the rest of the crew has been say'in.  I was BOT stage IV (I didn't know the stage until about 5 yrs post treatment, which was when we asked), and now I am close to 14 yrs out feeling better and doing better than I could ever have imagined way back in the bad old days.  I believe in hitting the ground running, doing what needs to be done, and staying positive (easier said than done, I know).  It's extremely important to take one day, hour, minute, second, or nanosecond at a time as the circumstance demands.  I repeatedly told myself, very literally: YOU CAN DO THIS in order to handle the challenges dujour; it's a sentence that I still utilize liberally for handling less arduous but significant challenges these days in my continuing process of evolution.  So TK, I along with our other CSN family members offer your brother, you, and your family an infinite supply of highly combustible, extremely powerful, eco-friendly (of course) fuel to stoke the fires of hope from beginning to end of the treatment tunnel and beyond.  It's a tough journey, but Your brother Can Do This...............*   

PATRICK     

Noellesmom

patricke said:

PILE ON

Hey TK,

I'm just chim'in in to pile-on to what the rest of the crew has been say'in.  I was BOT stage IV (I didn't know the stage until about 5 yrs post treatment, which was when we asked), and now I am close to 14 yrs out feeling better and doing better than I could ever have imagined way back in the bad old days.  I believe in hitting the ground running, doing what needs to be done, and staying positive (easier said than done, I know).  It's extremely important to take one day, hour, minute, second, or nanosecond at a time as the circumstance demands.  I repeatedly told myself, very literally: YOU CAN DO THIS in order to handle the challenges dujour; it's a sentence that I still utilize liberally for handling less arduous but significant challenges these days in my continuing process of evolution.  So TK, I along with our other CSN family members offer your brother, you, and your family an infinite supply of highly combustible, extremely powerful, eco-friendly (of course) fuel to stoke the fires of hope from beginning to end of the treatment tunnel and beyond.  It's a tough journey, but Your brother Can Do This...............*   

PATRICK     

agree

TK, I'm sorry your brother (and you) are going through this.

There will indeed be a lot of "hurry up and wait" because while this is the most urgent thing in your world right now, there is a process and protocol that must and will be followed before treatment begins.

My husband is four years out from hypopharyngeal and base of tongue cancer with involvement of lymph nodes on one side - he came through the treatment like a champ and although he is having some health issues now, his doctors agree he did very well with the treatment.  He is cancer free.

You have found a very intelligent, caring group of people here.  They have answers and advice on things you haven't even thought of yet but probably will in the wee, small hours of the night.  You will rarely be alone even if you come here then.

Let us know how things go!

greg348

there is hope

tkred5

 

Im 48yrs old and i was diagnosed with SCC  stage 4a of the base of tongue in feb 2014 involving a tumor  near my epiglottis and two lymph nodes on my left side of neck. never a smoker/chewer.

Completed 35 radiation treatments and 9 weekly treatments of erbitux.

Radiation treatments went pretty well for the first 4 weeks, but last three weeks and 11/2 months after treatment were tough.

Sore throat/radiation ulcer made swallowing tough. I did not get the peg/feeding tube, but wish I have had.

Erbitux did have a few mild effects including acne all over my head, neck upper chest & back, but overall it wasnt that bad.

Im now 16 weeks after completing treatment, and will be getting a follow up pet scan soon.

I feel & look great and working on getting my life back to normal.

It took a couple weeks for me to get over the intial shock after being diagnosed, but the best advice I can give your brother is to stay positive.

It can be beat.

LumpinmyThroat

HPV 16+

If he has never smoked the odds are that it is P16+.  This form is the most common and is very responsive to chemoradiation treatment.  He's going to kick it in the face and kill it.  Be positive, be strong, and be there for him no matter what.