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#147655 - 04/01/12 01:39 AM Re: Radiation worries. In need of some major advice [Re: Anne-Marie]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 487
Loc: NW Ohio
Boy, John, sounds like you need a new dentist. What a horrible way to be treated! Radiation side effects are no picnic, but you can get through them, I am living proof, as are most of the people on this site. Try not to get discouraged; you can make it!
_________________________
Female, nonsmoker, 69, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, looking at a very invasive
surgery which will involve lifestyle changes. Surgery on April 9. Still have a long journey ahead.

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#147662 - 04/01/12 02:19 AM Re: Radiation worries. In need of some major advice [Re: Charm2017]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
Charm, Just saw your comment back to me re: TSH. Thank you for responding. Sorry I didn't find it sooner.
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012

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#147663 - 04/01/12 02:26 AM Re: Radiation worries. In need of some major advice [Re: KP5]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
John,
Listen....people, even professionals, really have no business telling you (us) how you are going to feel or what you can "for sure" expect. First of all, has she been through it herself. Second, we are ALL different. There probably are a handful of folks on here that all share the SAME side effects. A few out of thousands. Please don't be defeated before you get started.
You do need to vent. WE know your peeved. We've all been or still are peeved, that's why it's so important to have each other. The things you are feeling and saying are very familiar to all of us. You can get through this and attitude makes all the difference in the world. It's ok to get ticked. Scream, like you did, say your sorry and pick up and move on. Before you know it you'll be done and a few months later you'll be amazed how well you did.
Please stay on here and yell all you want. We KNOW!!! We've been there.
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012

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#147665 - 04/01/12 03:06 AM Re: Radiation worries. In need of some major advice [Re: Charm2017]
Marly Offline
Contributing Member (25+ posts)

Registered: 03/31/12
Posts: 37
Loc: Rocky Point New York
Hi John, I understand all to well what you are going through, it's not an easy thing to go through you're not alone. Everyone handles Rad treatments differently. I had 1/2 of my tongue remover & all the lymph nodes on the right side of my neck removed as well At first I had very very little taste and in time it come back. I had the rad treatments and I'm glad that I did, I am now cancer free.
It's not as bad as it may seem. For dry mouth I use water, hard sugar free candy, Biotine mouth wash , juice , lollipops to keep mouth from drying.
_________________________
Female- Age 49, Non-smoker, I Had 6 weeks of rad/30 treatments, No Chemo.
1/2 of my tongue had to be removed as well as Lymph Nodes. Surgery was 11 & 1/2 Hours long. 40 Lymph Nodes where removed, only one was cancerous. smile

My Motto since my diagnoses- It's All In The Attitude!!!

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#147666 - 04/01/12 07:52 AM Re: Radiation worries. In need of some major advice [Re: Marly]
Stily1 Offline
"OCF Canuck, across the pond"
Senior Member (100+ posts)

Registered: 06/25/10
Posts: 152
Loc: London England
Hi John, I've not read every post in this thread, but your rant was brilliant.

First, if you've not already, just suck it up and apologise to your mom.....she'll understand, I think! It's the only thing you can do. Water under the bridge and all that.

Next, you appear to be going through a period of mourning for the loss of the life you had, that perhaps you took for granted. I can relate A LOT! There was a period of time that I really believed I wasn't going to make it. Not to scare you, and my darkest hours were probably mostly down to a rare bad reaction to the steroids they gave me along with all the rest, so you might sail right through.

But, don't lose the lesson.

You *are* alive. And *this* is your life. And you can chose to play the cards you're dealt, or not. Big tip; play the cards. You may as well.

I was just 43 when this broadsided me, and yes, it really did upset the apple cart, and in a way, took two years out of my life. Never ever saw it coming.

My train is back on the tracks. My life view is forever altered, but largely for the better.

Deep breathe, gather your people for support, you may need it. You may not, and I wish that for you. Good luck, and let us know how it goes.

-Seth
_________________________
47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.

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#147667 - 04/01/12 11:25 AM Re: Radiation worries. In need of some major advice [Re: Stily1]
lam007 Offline
"OCF Down Under"
Supporting Member (50+ posts)

Registered: 12/01/11
Posts: 60
Loc: NSW Australia
Hey John,

Caregiver here. Apologize. Share the words you put up here with her. I found them to be raw and real and moving. And consider that at some point in this she'll probably go off on YOU.

And the fact that going off felt good just screams to me that you want to fight. Great, that spirit will help you many times over as you fight off grief, negative thoughts and negative people.

And I must borrow the words of others here because I have not walked in your shoes............Don't give cancer more power than it deserves. It can't take everything but you can certainly give it everything, if you choose. Our situation is still very difficult right now on many fronts but I still love watching toddlers and piles of puppies. I'm still amazed by the ocean and in love with music. Modern Family makes me laugh. I give love and receive love. Buddy, allow yourself to feel oh so sad, if you don't you must be lying to yourself. Then scrap yourself back up and get back to the fight.

All the best
_________________________
CG to husband Stage IV SCC left tonsil 11/11. Mets to 7 nodes on left, 2 on right, no distant mets. PEG, 7 weeks radiation and weekly Cisplatin ended Feb 10, 2012. PET 04/12 areas consistent with inflammation, complete response in nodes. Recurrence 09/13 pulmonary lymphatics. Died 22 Oct following an allergic reaction to Erbitux.

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#147670 - 04/01/12 05:34 PM Re: Radiation worries. In need of some major advice [Re: lam007]
John of arc Offline
Senior Member (100+ posts)

Registered: 02/18/12
Posts: 117
Loc: New York
Thanks everyone. Things settled here.
I do feel like I'm a mourning the life I had. Why now? I have no idea. Between the diagnosis time and operation time I really had no time to digest anything. Now I've been given time and I think everything is just catching up to me.
I'm nervous. And scared. This is going to sound silly but I feel like the worst possible place cancer could have happened was my mouth. My whole life there's always been something going on in my mouth that has held me back. Between braces, a pallet expander, and chronic canker sores there has always been something holding me back from being comfortable and this is the cherry on top of that shit Sunday.
I just wish I knew how I was going to react. I know me. I know if my taste changes I won't eat and I'm thin as is. And I more than anything am not ready for my tongue to hurt again.
But I finally had something good happen and it happened yesterday of all days!
Allow me to share something positive for a change.

So I had a birthday party for a kid in my class to attend. So I went and had a blast even though I was surrounded by ten year olds. It meant a lot to the boy that I go. He looks at me like a big brother.
After the party I went with my family to visit my grandmother's grave. On the way back they were having a contest on the radio to win tickets to see sugarland. I knew they were coming and wanted to go but with all these bills we can't afford anything. So I just decides to call the number and not only did I get thru but I won! And the concert will be right after radiation is over. It gives me a goal to get to, something good to look forward to and it just felt so good to win something.
I guess someone up there decides I deserved a little sunshine on a day that started off really dark. But not without struggle! Lol. While I was on the phone I dropped the call twice and managed to get back thru both times. It was kind of a weird wake up call. That there is fight left and there are good things to fight for.
_________________________
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.

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#147671 - 04/01/12 06:49 PM Re: Radiation worries. In need of some major advice [Re: John of arc]
Anne-Marie Online   content
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2597
Loc: TN
Wow, John! Awesome to hear how things developed. A day like you describe really makes one wonder if there really isn't a master plan someplace directing our steps and leading us on the right path. Looks like your wake up call pointed you in the right direction. So glad you found the fight in you! And how nice it was of you to go to the birthday party with all the 10-year-olds. I'm sure it meant a lot to your "little brother". and it sounds like it made you feel good, too. I'm so glad you are staying involved in life and friends and family. It really does help to soften the difficult moments that come by. Keep up the fight, John!
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#147672 - 04/01/12 07:51 PM Re: Radiation worries. In need of some major advice [Re: Anne-Marie]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 487
Loc: NW Ohio
The loss of the life you had...boy, I can sure identify with that! I get so tired of my friends and family having to accomodate me when we go out to eat, even though I tell them not to. I do agree that the mouth is one of the worst, if not the worst, places to have cancer. Nobody really understands that except the people here. It sounds as if you ended up having a pretty good day, though. Kids can really help us keep things in perspective. Good luck to you!
_________________________
Female, nonsmoker, 69, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, looking at a very invasive
surgery which will involve lifestyle changes. Surgery on April 9. Still have a long journey ahead.

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#147673 - 04/01/12 09:40 PM Re: Radiation worries. In need of some major advice [Re: zengalib]
braziliangirl82 Offline
Senior Member (100+ posts)

Registered: 01/26/12
Posts: 110
Loc: br
Brain is the worst definately... And lungs too. And also bone cancers...

But I agree that having tongue cancer is a nightmare. Never had problems with my mouth and then tongue cancer shows up. Cancer was somethimg that wasnt a big worry to my family... What about now?

My worst sensation right now is to not have the ability to move my tongue through my whole mouth. smirk its kinda claustrophobic.

But i thank got to keep the hability to eat. And hope ill keep this forever...
_________________________
December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.

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