New and ready to fight

grace2017

My husband was diagnosed in September 2017 with SCC HPV+ tonsil cancer.  He is 41 and otherwise very healthy.  He had a neck dissection and tonsillectomy in October and will be starting seven weeks of radiation and chemo very soon (Cisplatin 1x week).  Right now, he is in calorie loading mode and trying to eat as much healthy stuff (or bascially any stuff) as possible. His weight is 138 normally, went down to 123 during surgery recovery, and is now at 134 (he is 5'7"). He still hasn't recovered 100% from surgery, so large amounts of eating solid foods is a bit challenging. I've been reading these forum posts for a couple of weeks and have learned some great tips and have been encouraged by many of your posts.  Thank you for your time on this site, especially those who are on the other side and still come back months and years later and offer advice. 

 

I am curious if any of you opted out of the chemo treatment.  From what I understand and what my husband's medical oncologist said, there is no real proven evidence that the chemo helps, and yet there is no proven evidence that it doesn't, so it is given "just in case."  Considering the long-term effects of Cisplatin, this is disconcerting to me.  And yet, if he doesn't have the chemo and the treatment isn't fully effective, will there be regrets? He did have extracapsular extension one of the lymph nodes, which was the reason given for the treatment to be chemo in addition to radiation.  Any thoughts?  Thank you and glad you all are out there! 

 

 

armana

Interesting information

It all depends if his cancer was caused by HPV.  Read the following form more info

http://www.cancernetwork.com/head-neck-cancer/unilateral-imr

http://www.cancernetwork.com/head-neck-cancer/astro-2017-upd

swopoe

My husband was 40 when he was

My husband was 40 when he was diagnosed 2 years ago, in October 2015. He was also otherwise very healthy. His treatment plan was Very similar to the one you described. His cancer was HPV- though. But we did the chemo and radiation. He has no effects from the cisplatin at this point. His doctors said that he was young, strong, and healthy and could “take it.” And he did. He did great with the treatment. He is cancer free and other than some scars on his neck from surgery, you would never know he was sick. And we have no regrets. We never wanted to wonder if we could have done something more. I didn’t read the articles just posted, but I know we made the right choice to give it everything we had.

christine2080

Chemo

My husband was diagnosed with SCC BOT HPV+ and started treatment October 4 and finished up on November 21. They did not do surgery because his tumors were on the right side of his neck and were too close to his jugular. He had 35 radiation treatments and was scheduled for 7 chemo (Cetuximab), but ended up not getting the last one because his neck is in such bad shape. The doctors told us that the chemo pushes the radiation and looking at his neck, they decided the last chemo wasn't necessary. Can you request Cetuximab instead of Cisplatin? The worst side effects my husband saw of Cetuximab was a terrible rash on his face, neck and chest. My husband also gained weight prior to treatment (15 pounds). 

CivilMatt

welcome

g2017,

Welcome to the H&N forum, sorry that you are here and even more sorry that you may be beginning this journey with incorrect advice.

To outright say chemo does nothing is an insult to you and to everyone who has endured the side effects.  If the increase in success is 1% or 20%, the increase may be all it takes to reach a cured status.

Add drinking lots of water and swallowing to his pre-treatment regiment.

Good luck,

Matt

ruben1

chemo

I am 2 months post treatment for Stage 4 tonsil cancer +HPV,  radicle tonsilectomy  33 reds/7 cisplatin,  I am doing very well,   I have lymphnode involvement so I did have the chemo, side effects right now from chemo is ringing in ears and fatigue but overall I  am doing well, I do have thyroid  symptoms now  but will ask my ON  about them , I am very fortunate right now that my recovery has been tremendous,  treatment is HELL , but he will come out from the otherside ALIVE. I have a new outlook on life now, just thankful to be here because.  I know I  am not out of the woods yet, my first PET scan is dec 23 and I  am hoping it will be a merry christmas. You guys hang in there, road will be hard, but you have each other to lean on. 

grace2017

Thanks for your replies

I really appreciate your replies.  Yes, the oncologist's attitude was a dark cloud in the treatment plan.  It would have been a bit more encouraging to stress the overall outcome, rather than, "well, we'll just toss the chemo in, even though we don't know for sure if it would help."  Luckily, there is a team of doctors and the rest of them are great.  So happy you are all doing fairly well...even great!  We are entering in determined to get through and it is so helpful to know you all are out there cheering us on. 

ruben1, my husband's diagnosis and treatment plan sound very similar to yours.  Thankful for your encouragment and praying for a good scan result for you.

Keeping up the hydration and swallowing is an awesome tip. 

Thanks!

FamilyLove

I had cancer in left tonsil,

I had cancer in left tonsil, base of tongue and right lymph node.  HPV+.  I was told that radiation is the main treatment and chemo is given to help aid in the treatment.  I assumed that since I had a lymph node involved the chemo would help with that.  I only had 2 doses of Cisplatin but that was because I got too weak to handle any more.  I would have finished chemo if I would have been able. I am doing fine at nearly 22 months out.  Praying for you and your husband

bebo12249

I’’m older but otherwise same

I’’m older but otherwise same Ca and treatment: surgery, chemo radiation. Never considered not taking chemo. As Matt said, any benefit beyond radiation was appreciated. If i hadn’t and there was a reoccurrence, i’d Always wonder.. bill

Andy13460

Chemo Cisplatin

I'm pretty sure the Cisplatin is mainly used to make the radiation more effective. I had the 3 larege doses of it on day 1, 22 & 43 with 7 weeks radiation. I was HPV+ base of tongue and lymph nodes. no surgery. Im 5'4" 57 years old, weight normaly is 137 lbs I put it up to 154 lbs for start of treatment, 22 weeks out of treatment running every day and back to 134 lbs for racing. Side effects for me was a slight loss of hearing. No feeding tube kept the swallow working, foods great now again for me.

 

lorijeannj

Grace2017,

Grace2017,

Just like Andy13460.  My husband was diagnosed the same.  No surgery.  Same chemo/rad treatment.  He is 3 weeks post treatment, and honestly, the radiaologist and I are shocked at how well everything went.  When he started, his tongue was so swollen he couldn't eat it hurt so bad and had a hard time laying flat and breathing (tumor was 5 cm and HPV+).  Radiologist even mentioned getting a trach (!!!) on day one.  Thank goodness the techs worked on getting that mask to fit.  Anyway, he got a PEG.  And thank goodness.  He stayed hydrated and consumed 2000 calories a day.  Maintained his weight throughout treatment (lost weight beforehand).

As far as chemo.  He had never thought or discussed not getting it.  He was willing and ready.  After all it is only seven weeks of a lifetime.  Yes, the chemo sucked, especially on weekends, but he survived.  No ill side effects as of yet.  The radiation caused some thick mucus but it had receded and may come back.  But his saliva is still there and swallowing is no longer an issue.  Planning on getting tube out in the coming weeks.

Radiologist stated tumor is gone, lymph nodes clear from mid MRI.  We will see Head and Neck surgeon in December for first peek in with a scope and I am guessing PET sometime January/February.  Our surgeon is one of the top docs in the Philadelphia area and believe me, if he had thought for a second that chemo wasn't necessary, he would have said so.

Good luck with your husband, shout out if need anything.

johnsonbl

There are generally accepted algorithms for the best treatment..

They are a bit hard to navigate if you don't know all the variables but the decision to add chemo isn't a "well, we'll just throw it in" sort of thing.  HPV+ is a positive.  Extracapsular extension is a negative.  

If you aren't a candidate for surgery to get the primary then the standard of care is radiation with chemotherapy.  Ask them to walk you through the NCCN guidelines to see where all your variables (staging, hpv status, high risk features such as extracapsular extension) place you in the accepted guidelines.  All of your physicians should be working from these standards.

Good luck and we'll see you when you join us on the other side (the good side...when we're all done) :-)

Brandon

phrannie51

Throw the whole kitchen...

at the beast!  I was told that the whole reason they do chemo and rads at the same time was because the chemo sets the cancer cells up to be annilated by the rads. Seems most Oncologists DO believe chemo has more benefit than just a possible help. If Cisplatin is worrisome there are other chemo....Cetuximab is one (it’s actually a biological) and carboplatin is another. The extra capsulated node pretty much screams chemo to me. 

P

grace2017

Thanks

I appreciate you all weighing in. I was able to have a conversation with another doctor on his team and we felt more secure after that. Amazing how some flippant remarks can throw off your whole focus! Two chemo treatments and several radiation days in and he is managing so far.  Side effects are a little strange (neverending hiccups and heartburn), but making it through one day at a time.  Taste is still there, but we are warned that it will fade any day now.  Thanks for all your thoughts and prayers.  I'm sure I'll pop in from time to time looking for more advice and encouragement.  Hopefully I can do the same for someone else in the future.

Sinus2016

No regrets.

I went in determined to win and put my trusts in the oncologist team & my Heavenly Father. No regrets as they know a lot more about cancer than I’ll ever understand.  Last treatment in early Nov 2016 and still cancer free. Working on year 2, then 3 etc. No hurry in reaching for the future just want to enjoy the present.

Mavish

Chemotherapy

I had hpv+tonsil cancer. They removed my tonsil and lymp nodes im my neck. My RO suggested combined eadio and chemo theràpy, but Mesixal oncologist, told thatb it is not necessary. I have also checked with another med oncologist in a different hospital. He suggested the same. So i had surgery and Radiotherapy (accelerated- 35 sessions in 6weeks). Now, 18 mo after treatment, things are pretty good. 

I have recently met another HNC survivor who had only surgery and radiotherapy, she has been cancer free for 10 years.

OKCnative

Mavish said:

Chemotherapy

I had hpv+tonsil cancer. They removed my tonsil and lymp nodes im my neck. My RO suggested combined eadio and chemo theràpy, but Mesixal oncologist, told thatb it is not necessary. I have also checked with another med oncologist in a different hospital. He suggested the same. So i had surgery and Radiotherapy (accelerated- 35 sessions in 6weeks). Now, 18 mo after treatment, things are pretty good. 

I have recently met another HNC survivor who had only surgery and radiotherapy, she has been cancer free for 10 years.

I was told the chemo in

I was told the chemo in addition to the radiation was precautionary to get any straggler cells that may otherwise be missed. I'm also told that's the up side to HPV+ cancers of the H&N. Often they can be resolved with surgery only or surgery and radiation only, or simply radiation. Chemo was given as a recommended option. I was told to see how I reacted to it and if I was okay with it, it was just an added layer of prevention. I did radiation and chemo, but no surgery. I know several people that had surgery only and radiation and surgery only and they are doing great! 

Hygienist97

Radiation to both sides of neck or just one

Hello , I'm new to this site as well so unfortunately I have no advice to offer at this time and I'm sorry to hear about your about your husband, I'm finding myself questioning treatment options for my husband at this time. Chemotherapy was described to us as being borderline for needing it, but did increase odds by 5 percent which seems worth it to me. My husbands biggest dilema now is trying to decide whether or not to recieve radiation to both sides of neck or just one as they apparently ar trying to descalate his treatment because of the HPV+ ,right side tonsil cancer , 2 lymph nodes no neck disection. I was wondering if Rads were being given on both sides to your husband? Thanks for you input.

Flyinhigh

Hygienist97 said:

Radiation to both sides of neck or just one

Hello , I'm new to this site as well so unfortunately I have no advice to offer at this time and I'm sorry to hear about your about your husband, I'm finding myself questioning treatment options for my husband at this time. Chemotherapy was described to us as being borderline for needing it, but did increase odds by 5 percent which seems worth it to me. My husbands biggest dilema now is trying to decide whether or not to recieve radiation to both sides of neck or just one as they apparently ar trying to descalate his treatment because of the HPV+ ,right side tonsil cancer , 2 lymph nodes no neck disection. I was wondering if Rads were being given on both sides to your husband? Thanks for you input.

Radiation

i had exact diagnosis as your husband, except left side.  Had chemo for same reason, 5-10% increase in odds.  i had 40 IMRT treatments with first 25 going to both sides of neck and last 15 concentrating on side of cancer.  My oncologist said his success rate has been 100% with this protocol, so I did not waiver.  My mistake was not treating skin from the beginning and neck was blistered pretty bad.  Finally started using Miaderm, made for radiation patients, which was great.  OTC about $35 per tube(Amazon).  Best of luck to your husband, it’s a tough go, but he will make it.

Frances_S

It's was about the Cure

Hi Grace,

It was about the Cure for us. When my husband was first diagnosed our thoughts were all over the place. We went for 4 opinions, we agonized over should he get the chemo or not, should he get radiation on both sides of his neck or just one side.

At the end of the day, we realized it comes down to survival and cure. He did the chemo and the radiation on both sides of his neck. To refuse one or the other was not worth the risk.

It’s not an easy treatment, and I would never want my husband to go through this again.

I wish you and your husband all the best!

 

Frances

OKCnative

I received 35 radiations.

I received 35 radiations. Still have my mask. I was radiated in three spots; either side of my neck and the base of my tongue. No neck dissection. I also received the 3 large doses of Cisplatin chemo. I don't regret a minute of it. The docs said that since I'm young-ish (47), in excellent health and had a great mind set, that they'd throw everything at it so that my chances of re-occurrence would be extremely low.

I didn't seek an "easier way out" because I knew that whatever they did would be temporary. Didn't even do the PEG tube because I wanted to keep using my throat muscles.

It's a very rough road and so much depends on the individual. Do what you have to do and then see if you can handle just a bit more - life is so worth it.