New and ready to fight

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.

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

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

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.

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

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 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 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 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.

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.

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.