Done with radiation and weekly chemo. [Stage 2 NPC]

glend04

Kenny- said:

240mg

Hey Glen,

Congratulations for getting over the first phase! I did 240mg/m2 in total; split over 6 weeks. I did not do the last chemo (the last week of my radiation) as I was feeling pretty beaten up by then. The full treatment would have been 280 mg/m2. 

But I'm starting adjuvant next week on a 80mg/m2 cisplatin + 5FU every 3 weeks. Are you doing the same? Your condition is very similar to mine T2N0M0. 

adjuvant

No, my oncologist didn't advice me for adjuvant. Is this required?

Kenny-

Completion

Apologies that I haven't logged into to the board for a while. Thought of sharing the closure to the adjuvant chemo. 

Experience: The adjuvant chemo was, horrible. For the lack of a better word. The Cisplatin and 5FU really did mess me up, bad. Lost 25 lbs in total (15%) body weight throughout the entire treatment. Drinking a cup of water took 30 minutes. In the end, I completed three cycles of adjuvant (Cisplatin + 5FU); with the 3rd adjuvant only having Cisplatin (without 5FU). I didn't want to proceed with the 3rd, but doctor negotiated remove 5FU.

Fast Forward: Recovery was relatively slow, but decent after chemo. I think it's because it was so far from radiation. Progress can be measured on a weekly basis. Recovery in the first month after adjuvant is relatively quick. After about 1 month I was able to eat most foods except spicy and acidic. After about 2 months (where I am now) taste buds are 50% back, but saliva glands only about 10%. Progress is now slower, I think this is somewhat the new normal. I'm still carrying a bottle with me everywhere I go, and eat with lots of water. very thankful that I'm still retaining some taste!

hope everyone else is doing fine! 

-Ken

Barbaraek

Kenny- said:

Completion

Apologies that I haven't logged into to the board for a while. Thought of sharing the closure to the adjuvant chemo. 

Experience: The adjuvant chemo was, horrible. For the lack of a better word. The Cisplatin and 5FU really did mess me up, bad. Lost 25 lbs in total (15%) body weight throughout the entire treatment. Drinking a cup of water took 30 minutes. In the end, I completed three cycles of adjuvant (Cisplatin + 5FU); with the 3rd adjuvant only having Cisplatin (without 5FU). I didn't want to proceed with the 3rd, but doctor negotiated remove 5FU.

Fast Forward: Recovery was relatively slow, but decent after chemo. I think it's because it was so far from radiation. Progress can be measured on a weekly basis. Recovery in the first month after adjuvant is relatively quick. After about 1 month I was able to eat most foods except spicy and acidic. After about 2 months (where I am now) taste buds are 50% back, but saliva glands only about 10%. Progress is now slower, I think this is somewhat the new normal. I'm still carrying a bottle with me everywhere I go, and eat with lots of water. very thankful that I'm still retaining some taste!

hope everyone else is doing fine! 

-Ken

Glad you posted

Great to hear from you Kenny. You did better than my husband. We had to pull the plug on the adjuvant after the first cycle. His body just couldn't tolerate it. Those nasty cancer cells MUST be all gone with all you blasted them with. Hang in there and enjoy each day. Yes, progress does slow down but it moves forward and that's the key.

Best wishes,

Barbara

Lakerider

Kenny- said:

Completion

Apologies that I haven't logged into to the board for a while. Thought of sharing the closure to the adjuvant chemo. 

Experience: The adjuvant chemo was, horrible. For the lack of a better word. The Cisplatin and 5FU really did mess me up, bad. Lost 25 lbs in total (15%) body weight throughout the entire treatment. Drinking a cup of water took 30 minutes. In the end, I completed three cycles of adjuvant (Cisplatin + 5FU); with the 3rd adjuvant only having Cisplatin (without 5FU). I didn't want to proceed with the 3rd, but doctor negotiated remove 5FU.

Fast Forward: Recovery was relatively slow, but decent after chemo. I think it's because it was so far from radiation. Progress can be measured on a weekly basis. Recovery in the first month after adjuvant is relatively quick. After about 1 month I was able to eat most foods except spicy and acidic. After about 2 months (where I am now) taste buds are 50% back, but saliva glands only about 10%. Progress is now slower, I think this is somewhat the new normal. I'm still carrying a bottle with me everywhere I go, and eat with lots of water. very thankful that I'm still retaining some taste!

hope everyone else is doing fine! 

-Ken

Looking for Information

Ken

Glad to hear your finished with the treatment and on the mend.

I'm Bill and after tongue biopsy in March it was confirmed squamous cell carsanoma of the tongue.

I think treatment will begin in about a week. Will have radiation on Varian Truebeam and possible chemo of some kind. Has anyone been treated on a Varian Truebeam?

 

Barbaraek

Lakerider said:

Looking for Information

Ken

Glad to hear your finished with the treatment and on the mend.

I'm Bill and after tongue biopsy in March it was confirmed squamous cell carsanoma of the tongue.

I think treatment will begin in about a week. Will have radiation on Varian Truebeam and possible chemo of some kind. Has anyone been treated on a Varian Truebeam?

 

TrueBeam

is a brand name of a manufacturer of a linear accelerator that delivers rads. My husband had 35 sessions over 6 weeks with the TrueBeam to treat a stage 4 nasopharyngeal tumor. The radiation was intensity modulated and they used computer models to regulate the dose - higher amounts to tumor dense areas and backing off some where the tumor was near critical structures such as the carotid artery. It is the stuff of science fiction and thankfully it worked!

Barbara

Lakerider

Barbaraek said:

TrueBeam

is a brand name of a manufacturer of a linear accelerator that delivers rads. My husband had 35 sessions over 6 weeks with the TrueBeam to treat a stage 4 nasopharyngeal tumor. The radiation was intensity modulated and they used computer models to regulate the dose - higher amounts to tumor dense areas and backing off some where the tumor was near critical structures such as the carotid artery. It is the stuff of science fiction and thankfully it worked!

Barbara

Varian Truebeam

Barbara, Thank you so much for the information. I knew the Truebeam was the newest radiation machine on the market but hadn't found anyone who had been treated on one. My cancer is stage 2 and would like to hear from someone who has had stage two squamous cell carsonoma of the tongue. 

Thank you again, Bill

Raddude

Congratulations!

I finished 5 weeks ago and honestly it seems like much longer. Starting to feel my new normal. Nothing like the last day in the mask.

wmc

Kenny- said:

Completion

Apologies that I haven't logged into to the board for a while. Thought of sharing the closure to the adjuvant chemo. 

Experience: The adjuvant chemo was, horrible. For the lack of a better word. The Cisplatin and 5FU really did mess me up, bad. Lost 25 lbs in total (15%) body weight throughout the entire treatment. Drinking a cup of water took 30 minutes. In the end, I completed three cycles of adjuvant (Cisplatin + 5FU); with the 3rd adjuvant only having Cisplatin (without 5FU). I didn't want to proceed with the 3rd, but doctor negotiated remove 5FU.

Fast Forward: Recovery was relatively slow, but decent after chemo. I think it's because it was so far from radiation. Progress can be measured on a weekly basis. Recovery in the first month after adjuvant is relatively quick. After about 1 month I was able to eat most foods except spicy and acidic. After about 2 months (where I am now) taste buds are 50% back, but saliva glands only about 10%. Progress is now slower, I think this is somewhat the new normal. I'm still carrying a bottle with me everywhere I go, and eat with lots of water. very thankful that I'm still retaining some taste!

hope everyone else is doing fine! 

-Ken

Ken thanks for letting us know.

Yes it is a slow process for recovery. Yes everyone is a little different, but on the whole of it, recovery is in months, not weeks. You are really doing better than most, even if it seems slow. Many don't get 50% tast back this soon. Like having radiation when it done, only the Tx is done as you still cook in side for up to 8 weeks. 

The main thing to remember is you made it through what the doctors say is the second treatment one can go through is Head & Neck. Rest up and keep sipping that water. Yu did good and should be very proud of yourself.

Bill

Kenny-

Thanks for the good wishes everyone! Good to connect back without everyone hear and glad everyone is doing well.

Indeed, I realized I needed to clarify what I meant by recovery in weeks, just not to disappoint anyone who is currently going through the treatment. The reason my recovery is measured in weeks is because I took the adjuvant chemo. My radiation ended mid-November, and my adjuvant ended early Feburary. So, I had about 3 months from radiation when I started 'recovering'. The radiation is the really nasty stuff (chemo is nasty as well) but recovery from chemo seems to be quicker than radiation. If I measured how far I was from radiation, I'm about 5 months out! Don't give up! It won't be the same but it will get better

wmc

Kenny- said:

Thanks for the good wishes everyone! Good to connect back without everyone hear and glad everyone is doing well.

Indeed, I realized I needed to clarify what I meant by recovery in weeks, just not to disappoint anyone who is currently going through the treatment. The reason my recovery is measured in weeks is because I took the adjuvant chemo. My radiation ended mid-November, and my adjuvant ended early Feburary. So, I had about 3 months from radiation when I started 'recovering'. The radiation is the really nasty stuff (chemo is nasty as well) but recovery from chemo seems to be quicker than radiation. If I measured how far I was from radiation, I'm about 5 months out! Don't give up! It won't be the same but it will get better

Celebrate everything. What can seem small to others are major to us. Just having more saliva is major as it protects your teeth. Getting to hear the term NED is such a wonderful sound and a term many have never heard until they make this journey. Never forget you fought, and beat the beast.

Bill

Barry1234

Lakerider said:

Varian Truebeam

Barbara, Thank you so much for the information. I knew the Truebeam was the newest radiation machine on the market but hadn't found anyone who had been treated on one. My cancer is stage 2 and would like to hear from someone who has had stage two squamous cell carsonoma of the tongue. 

Thank you again, Bill

truebeam

Bill, my rad treatments are with Truebeam machine also.  I have five left.  Will be finished next tuesday, April 26, 2016.  I have not had major issues with rad treatment so far.  I used Erbitux instead of traditional chemo.  Barry

wmc

Barry1234 said:

truebeam

Bill, my rad treatments are with Truebeam machine also.  I have five left.  Will be finished next tuesday, April 26, 2016.  I have not had major issues with rad treatment so far.  I used Erbitux instead of traditional chemo.  Barry

Berry that is very good news.

We all should celebrate every milestone with any treatment we go through. Radiation is something that can affect everyone different and how they react to it. Some get a lower dose and say they did better. The way my Radiation Oncologist explained it to me was the radiation only while the beam is on is working. What that means is the radiation scrambles your DNA and when the cells divide is when they die because the DNA was scrambled.  When treatment is done the cells can still be dividing and dying when they do so. The term "cooking" was a term used on here and really is not  the correct one to use, it just became the term. Still working is probably a better way to say it. They wanted to do radiation first on me but my lungs were to damage and they said I would not survive it. I had extensive surgery to remove my tumor but it worked.

I have been hearing many good things with the Truebeam and also have read great things as well. Ring that bell on Tuesday and again celebrate what you have accomplished and gone through.

Bill

Kent Cass

phrannie51 said:

Not getting adjuvant chemo

for NPC is rare....I'm sure there are more people who didn't get it, I just can't think of any.  I say hit it with all ya got first time around.  At least give the adjuvant a try....if your body can't handle it, that's one thing....but just opting out is something I didn't allow myself to think about.........much (after the 2nd one, I was thinking of skipping the third, but when the day came....I knew I'd never forgive myself if it came back).

Now for the thrush.  Taking the Diflucon works....most of the time.  But for additional help in kicking that crap out of your mouth and throat....try Primadophilus Bifidus capsules.  It's a probiotic that puts good bugs into your system.  I've even cured mild thrush with this and skipped the anti-fungal all together so it's nice to have in your refrigerator when you need it.

Open the capsule and pour on your tongue....add some water, and just swish it around....hold it in your mouth....generally, mess with it in your mouth for 5 to 8 minutes (if you can).....then swallow it.  Do it twice a day, and you will be amazed.  Next time if you feel thrush coming on, grab the bottle out of the fridge and start right away, you might not even need the Diflucon.

I bought mine at the health food store....in the refridgerator section.  I keep it on hand now always.

p

  

  

Kent Cass

wmc said:

Ken thanks for letting us know.

Yes it is a slow process for recovery. Yes everyone is a little different, but on the whole of it, recovery is in months, not weeks. You are really doing better than most, even if it seems slow. Many don't get 50% tast back this soon. Like having radiation when it done, only the Tx is done as you still cook in side for up to 8 weeks. 

The main thing to remember is you made it through what the doctors say is the second treatment one can go through is Head & Neck. Rest up and keep sipping that water. Yu did good and should be very proud of yourself.

Bill

 

 

kdot2003

Hi Kenny

Good to hear from you.  I'm glad its over for you.

Karen