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Update

stevenpepe's picture
stevenpepe
Posts: 226
Joined: Apr 2016

Happy New Year everyone,

On January 8th, I'll be two years out from my last chemo and rads treatment from tongue and neck cancer I battled twice in 2016. Numerous scans have all been NED. And you know how crucial those first two years are, right?

Well, I've discovered the cancer is back on my tongue at the surgical site. I haven't been to the doctor yet and I should see my surgeon early next week.

Now I could be wrong, but this is the third time I've discovered it before the doctors did. Sadly, I was right the first two times. Maybe I'll fail this time but I honestly don't think so. 

My worries...the radiation damage to my neck and jawline has made it very difficult to open my mouth. I remember Hondo had the same issue, rest his soul, and I'm now living with it. I can barely fit one finger width at this point so how they perform surgery is a scary thought. My radiologist said one way they do it is by splitting the jaw open, if necessary. Yikes!

Of course, eating is very difficult but my appetite has been so strong that I've managed to gain 15 lbs onto my small frame, putting me back very close to pre-cancer weight levels. Now I'm going on a binge, drinking high-calorie shakes to put on even more weight should surgery be in my near future. Both hospital stays I could not eat a thing and lost considerable mass. Not to mention how horrible the food was to even look at.

Have you even seen pureed lasagna? Probably made with jarred sauce, too. To us Italians, that is sacreligious!

So, I guess I'll be back here entertaining you with my continued war stories. Meanwhile, I wish everyone a wonderful new year and continued good health!

ERomano's picture
ERomano
Posts: 20
Joined: Dec 2018

...and hoping you are completely wrong!

I'm new here and only 6 months post, and I'm very aware of that crucial 2-2 1/2 year NED mark is and my heart goes out to anyone that has had recurrences. That's gotta be a bit disheartening thing to accept after having battled once or twice already.  But I guess it's also a time to just buckle down and get it done.  

As for the pureed lasagna, I don't think I would have any problem with that.  Now pureed pierogis would be another matter altogether!

Best wishes to you!

wbcgaruss's picture
wbcgaruss
Posts: 240
Joined: May 2018

difficulties again. But I certainly hope you are wrong and don't have another bout with fighting cancer. Too bad you have difficulty opening your mouth normally and yes I remember Hondo had trouble with that. You don't say whether you had a biopsy done on your tongue before you go back to see the doctor/surgeon next week but remember what they say on this forum "It's not Cancer Till They Say It's Cancer". Prayers your way that you do not have cancer because you certainly have had your share and God Bless and Take Care-Russ

armana's picture
armana
Posts: 77
Joined: Aug 2014

Steven, You have fought very hard the past two years and don't deserve going throught this again.

You will be in my prayers and please keep us posted.  Arman

swopoe
Posts: 464
Joined: Oct 2015

Steven- I really hope you are wrong! You should not have to go through this a third time. You have been so strong already. Please keep us posted. I hope you get a good report from your docs.

SuzJ
Posts: 316
Joined: Mar 2017

Thats bad even if your NOT italian!

Good Luck, we are all rooting for you

phrannie51's picture
phrannie51
Posts: 4721
Joined: Mar 2012

This is not fair!  

Ok....I can hear you gearing up for the next battle, and I can say I know how it feels...”Really???.....again??”  But if you’ll let me be a little bold....please insist...and I mean INSIST....on getting genetically tested....for Keytruda and larotrectinib.  That’s all the bossier I’ll be today....Good luck, Steven.....I’m praying that this time you’re wrong....that what you’re feeling is a side effect of rads or something. 

p

Drivingdaisy's picture
Drivingdaisy
Posts: 185
Joined: May 2016

Happy New Year Steve?   So sorry about looking at another round of this crap.  We both started around the same time.  I have been fortunate but remember when you did so well the first time & was eating like crazy, I was so jealous as a poured another shake down My feeding tube.  I do know a man here that deals with the mouth not opening very far.  He went 3 yrs therapy with tongue depressers getting it to finally open more.  Finally got his first slice of pizza.  Saw him recently & he was ordering a stuffed pepper at our gourmet market.  Was thrilled but asked if he could eat that now.  He said he was going to try but worse case into the Nutra-bullet to purée iT. just Hope if you have another round to work though you do well & this finally ends for you so you can march onward.  You are so strong & make me realize My issues are small compared to yours.  Ok one up on you, had a stroke in 2017 & 3 concussions due to a Sodium issue brought on by original treatments but this place I always come back too to. Get grounded.  Remember your a Warrior, fight this & WIN.  We are all rooting for you.  Stay strong, we care & want you well & happy again.  Good Luck to you my fellow Warrior.  Hugs, Lisa

stevenpepe's picture
stevenpepe
Posts: 226
Joined: Apr 2016

I should know next steps this week when my surgeon gets back to me. It's definitely back. A conspicuous tumor staring right back at me. Has anyone had alternative treatment success with tongue tumors? Seems they always want to do surgery with the tongue.

wbcgaruss's picture
wbcgaruss
Posts: 240
Joined: May 2018

She did immunotherapy and I believe very successful.

phrannie51's picture
phrannie51
Posts: 4721
Joined: Mar 2012

.....love to push alternative treatments, but not a single one has cancer or ever did.....they just wanted me to try it.....ummmm, no thanks. BUT, you are a smart man, and if I can read clinical trials, you can, too....that’s as alternative as I feel comfortable going.  The government site has all of them in the US listed....just put in your search terms.  My whole idea in searching clinical trials was having an alternativ, something else in my pocket if what they were doing wasn’t working. The cyroablation didn’t cure the nodule but it knocked cancer out of my lungs....it was a clinical trial. Just check the site out, so you know what’s out there.  clinicaltrials.gov

After the last 3 years my plan is to stay alive till they have a cure....everything I do that buys me 6 months or a year I’ll do to carry me through to the next step. 

Immunology is one of those steps....

p

whoisjohngalt
Posts: 24
Joined: Mar 2018

hear about your recurrence. I am 7 months out from ONE bout, and couldn't imagine doing it twice, let alone three times! Reading your post you seem mentally strong and in relatively good spirits. Please continue to post updates. There are many good people here who will pray for you, and send you good thoughts. Keep fighting and know all of us will think of you often. Good Luck and God Bless!

Jambro's picture
Jambro
Posts: 11
Joined: Jul 2018

I hope you get better news than you anticipate this week. Regardless, hopefully at worst, your diligence in early detection will make the solution much more manageable. I am new to the recovery phase of this, so I can't offer much advice or knowledge. I have read a lot of your prior posts and I can tell you seem to have a pretty good handle on things. Thoughts, prayers, hugs, and good vibes heading your way.  Best of luck and hang in there Steven

joannaw81
Posts: 175
Joined: Sep 2011

Hi Steven,

stand still, it may not be what you think it is... there is so much more it could be after so many treatments. I hope you are faimiliar with my mom's story, she had this cancer came back 3 times. If it is cancer, you can beat it again. Have your doctors considered brachytherapy?

http://www.cancernetwork.com/brachytherapy/brachytherapy-treatment-head-and-neck-cancer

all the best to you!

 

 

stevenpepe's picture
stevenpepe
Posts: 226
Joined: Apr 2016

My surgeon says it's not cancer. Most likely a reaction to an abrasion. Apparently, when bruised, radiated tissue reacts quite differently from normal tissue. I won't be having my jaw split open anytime soon, thank God!

armana's picture
armana
Posts: 77
Joined: Aug 2014

It ain't cancer until they say it is.

Great news

caregiver wife
Posts: 208
Joined: Oct 2016

AWESOME!

Crystal

RB50
Posts: 4
Joined: Jan 2019

That is awesome! It is a happy new year!

big G's picture
big G
Posts: 5
Joined: Sep 2018

Congrats, I hope you have a great 2019 and continued NED

ERomano's picture
ERomano
Posts: 20
Joined: Dec 2018

Congrats and Happy New Year!

wbcgaruss's picture
wbcgaruss
Posts: 240
Joined: May 2018

Couldn't be any better news than that-Yes Thank God!

Fritz's picture
Fritz
Posts: 100
Joined: Jun 2016

As a fellow 2016 alum and one that was going through this hell at the same time you were, I am so HAPPY for you. Keep the fight going and best wishes in 2019!!

 

Freddie

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