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#147266 - 03/18/12 06:11 AM Am I Crazy
MargieL Offline
"OCF Down Under"
Supporting Member (50+ posts)

Registered: 06/19/08
Posts: 51
Loc: Coffs Harbour, Australia
I am six years out of treatment and I still have the same pain as I did over all these years, the drs are blaming it on the tissue damage from the radiotherapy I have just spent another week in hospital with pneumonia due to the aspirations into my lungs. I have also just had another throat dilatation. I know I should be used to it by now, but at the moment I just feel so angry. I just feel like I have had enough. The only thing that keeps me goiing is my family and my six beautiful grandchildren. Thanks for letting me vent.
_________________________
SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.

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#147267 - 03/18/12 09:57 AM Re: Am I Crazy [Re: MargieL]
lam007 Offline
"OCF Down Under"
Supporting Member (50+ posts)

Registered: 12/01/11
Posts: 60
Loc: NSW Australia
You are not crazy. You should not be used to it. And the people we love are what makes life worth living. Have a rant and a vent then get back to loving (and being loved by) your family and six beautiful grandchildren.

Oral cancer sucks but there are some things it can't take from you.
_________________________
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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#147271 - 03/18/12 03:51 PM Re: Am I Crazy [Re: lam007]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 941
Loc: Ohio
Hi, Margiel - absolutely, vent away. I wonder if the fact that you are taking such good care of yourselve with diet and fitness make the contrast with your poor damaged throat and the rest of your body all the more annoying. If you were an 'old' grandmother it would be just one more thing, but you strike me as a 'young' grandmother.

You are so lucky to have 6 grandchildren, though. I don't have any (yet) and always borrow grandbabies to hold when I get the chance. Best wishes from the other hemisphere and keep fighting the good fight!

Maria
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#147276 - 03/18/12 05:16 PM Re: Am I Crazy [Re: Maria]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Hi congrats on being six years out that's fabulous! I hear you onthe side effects! It sucks! Feel free to vent - its great yourw doing all you can to feel your best. Take care and hugs...
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#147284 - 03/18/12 08:00 PM Re: Am I Crazy [Re: MargieL]
julieann Offline
"Above & Beyond" Member (500+ posts)

Registered: 06/24/09
Posts: 875
Loc: Alabama
Hi Margiel:
I am so glad you posted - I thought I was the rare one who still suffered, now more than earlier after my treatments, with problems, which the doctors all end up saying are associated with after radiation effects. I know my throat was damaged, but several years ago, I was able to swallow better than I can now. I also have the most putrid sweet foul taste 24/7 in my mouth whether I eat something or not. I know our tastes change, but this isn't like something sour tasting sweet, or something sweet tasting bitter; it's foul sweet whether I eat or not. The mucus goes from frothy to pudding, no matter if I drink water or not. I've been to numerous ENTs, gastro drs. to no avail - end up with the diagnosis of after-radiation effects. I'm still trying though - going to a specialist in Vanderbilt, Nashville, TN next month. There, not that I've had my "vent" I feel much better. Just wanted you to know you're not alone.
julieann
_________________________
Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

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#147289 - 03/18/12 11:58 PM Re: Am I Crazy [Re: julieann]
ZendaT Offline
Senior Member (100+ posts)

Registered: 02/20/05
Posts: 117
Loc: Mesa, Arizona
Greetings Margie and Julieann. I too am a member of the Nasty After Effects of Radiation club. I had a modified radical neck dissection in addition to chemotherapy and radiation in 2005. I have the ongoing mucus "goo" and that putrid foul sweet taste. I just had the titanium bar removed from my chin and debridement of the dead bone in my jaw. I think there are a number of OCF members with effects several years out. I'm very happy to be around to vent, and I am very happy that strides have been made in the delivery of radiation so that fewer survivors will be plagued by radiation's longer term effects.
_________________________
Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.

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#147349 - 03/20/12 08:19 AM Re: Am I Crazy [Re: ZendaT]
MargieL Offline
"OCF Down Under"
Supporting Member (50+ posts)

Registered: 06/19/08
Posts: 51
Loc: Coffs Harbour, Australia

thank God, there are some others out there who are still suffering, I dont mean that I am glad you are in pain, but at least you understand. Todays pain is unbelievable and I feel like doubling up on my meds, but I wont, it is only two hours till bed time and I can take my sleeper friend and get a few hours. My tongue is burning, my jaw is aching oh well you know what I mean. Maybe one morning we will wake up and it will be gone. We have to live in hope anyway. Thanks for your help.
Margie
_________________________
SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.

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#147354 - 03/20/12 01:21 PM Re: Am I Crazy [Re: MargieL]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9092
Loc: PA
You are not alone with the pain. My shoulder has some big issues since my surgeries a few years ago and still aches. Some days are worse than others and I will have facial muscle spasms which stop me in my tracks. Do the very best you can with what you have. Here in the US there are pain management clinics. I havent been to them but Ive heard good things about them having lots of options to help. You have OCF so you are never alone with your after effects!

Best wishes for many better days ahead!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#147363 - 03/20/12 05:07 PM Re: Am I Crazy [Re: ChristineB]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 941
Loc: Ohio
One of my riding buddies is a neurologist specializing in pain management - among her patients are cancer survivors dealing with chemo-related neuropathy and other treatment-related issues, so perhaps a trip to a specialist might help.

Julianne, hope that your trip to Vanderbilt yields good results - be sure to let us know how your trip goes.
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#147364 - 03/20/12 05:16 PM Re: Am I Crazy [Re: Maria]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 493
Loc: NW Ohio
I am still having aftereffects of my treatments, after nearly 3 years, but, hey, guys, we are all still here! This is a great place to come and vent, though. Right now the neuropathy in my feet is really annoying, and I really wish that I could enjoy eating again. Hang in there, Margie!
_________________________
Female, nonsmoker, 70, 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, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.

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#147376 - 03/20/12 10:42 PM Re: Am I Crazy [Re: zengalib]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 289
Loc: Kansas
Hi,
Yes, sign me up for the list of people who are not satisfied with the side effects of cancer treament. One thing that helped me along was the chance to get to peruse a book called, "Explain Pain". It is an expensive book with great art work that my physical therapist had, and let me check out for weeks! From reading it I became convinced that our perception of pain was at least part of the difference in whether or not we experience pain. I cannot go into all of it with you here now (could not adequately express the content) and it is true most of us, myself included, just want a pill, or some kind of easy fix for how we feel.

An example: I know I feel like my neck is swollen even when it does not look that way to others. In fact any swelling that is there is not much. One of the PT's suggestion was to touch my neck periodically to reassure my brain that my neck is normal sized. Maybe no one else experiences this, but this perceived swelling gives rise to other unpleasant symptoms for me.

Part of it is accepting what our new normal is, like it or not. Our old normal was something that our brains were accustomed to. It is a pity that medical personel are not better trained to address this giant adjustment that we have to make.

It is great that you are 6 years away from your treatment though.
Best,
Anne
_________________________
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of 10/2015

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#147378 - 03/20/12 11:15 PM Re: Am I Crazy [Re: AnneO]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Sounds like a great recommendation Anne, I'll have to check it out. As far as pain goes, there are several studies out there that point to the fact that pain isn't just a physical thing, but a mental and emotional one as well.

One of the reasons Dr's prescribe antidepressant meds for pain relief is actually because our mind is more sensitive to pain when we are depressed. Odd but true.

For many the emotional healing part of cancer is the hardest, I know this is true for me. Everyday I wake up and have to make the choice to be positive, to look past the disfigurement and pain and enjoy my family and the time given to me. It's a daily struggle and I'm thankful that I have great friends on these forums and in life that help support me everyday. Strength in numbers is a phrase I use very often.

Keep pluggin into these forums, friend some of us on Facebook and plug into the truly amazing people that understand your struggle. I don't know where I'd be if it weren't for the relationships and guidance I've found on these forums, probably still drowning in a sea of despair and opiates.

Be well

Eric
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#147379 - 03/21/12 12:29 AM Re: Am I Crazy [Re: EricS]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 289
Loc: Kansas
I did not know about the link between depression and pain, but it makes sense, Eric.

Just shows that we have to fight against the foe on many sides: keep on seeking the best medical help, keep our psyches in good shape as well as our bodies as best we can, keep up the physical activity, keep and talk with our friends, our support system! So thus, we "keep on keeping on"!

Best to all,
Anne
_________________________
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of 10/2015

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#147386 - 03/21/12 04:47 AM Re: Am I Crazy [Re: AnneO]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Totally agree and I'm glad that you brought up the "keep up the physical activity". Those that know me know I work out often, for several reasons however a major one is that exercise is shown to be as effective as antidepressants on depression. Where the effects aren't immediate, over a period they are found to be equally effective.

Helps with pain, outlook etc...also studies show that the higher percentage of lean muscle mass on a cancer patient generally leads to a better prognosis. One more reason I lift like a mofo.

Love the "keep on keepin on", it's how I live!

_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#147389 - 03/21/12 01:51 PM Re: Am I Crazy [Re: EricS]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Margie

Don't know if Patsy Cline's song: Crazy was popular downunder, and even if she was, it was probably before your time. your thread title: Am I crazy made me think of it.
Quote:
Crazy, I'm crazy for feeling so lonely
I'm crazy, crazy for feeling so blue...
Worry, why do I let myself worry?
Wond'ring what in the world did I do?...
I'm crazy for trying and crazy for crying


But what else can we do but keep trying? You are not alone in having pain and radiation complications. Perhaps our doctors should start preparing us like the radio and TV ads all do when discussing any TX or medicine: " Individual results will vary ". For many of us, daily pain is the "new normal".

For me, exercise and wine really help my daily pain - although not at the same time wink
Sorry it's going so hard for you
Charm



Edited by Charm2017 (03/21/12 01:52 PM)
Edit Reason: typos
_________________________
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13

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#147392 - 03/21/12 02:18 PM Re: Am I Crazy [Re: zengalib]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Love that Patsy Cline - and her rendition of "Crazy". I have it on sheet music and bang away at it when I hit the low-points. I think it's ok to get crazy - it helps to relieve stress. My old Abnormal Psychology prof used to say that no one is completely normal anyway. About exercise, that is so good, too! At one of my "low points" as a CG, I found myself laying in bed, on my back, not able or wanting to even get out of bed. After a while, I slung one of my legs over the side of the bed with my foot resting on the floor feeling like I could not go any further. I remembered someone saying "one foot in front of the other" and thought, "OK, I did it, now what?" It took a while, for me. It's a gradual process. It takes practice. Small steps. And you begin to notice things do get better. Margiel - you have something really important going for you - your family and your beautiful grandchildren! This is your "Why" that Eric mentions in his signature line.
_________________________
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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#147416 - 03/22/12 10:40 PM Re: Am I Crazy [Re: Charm2017]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9092
Loc: PA
Margie, I would like to clarify something about facebook. You cant find a better avenue for info and support than the OCF forum. Facebook could never take the place of the OCF forum. This is the very first place to go to for questions and help. So if you have questions, this is the right place to ask. OCF is also a place where everyone can be anonymous. To further your friendships, facebook is a great place for that.

Over the years, many of us have become friends over on Facebook. In fact over 2 years ago I began a list of OCF members who are also on facebook. Its great to put a face with a name, but remember it also will take away your anonymity. It also gives us a chance to talk about things other than our health. Its a great way to get to know some other interesting things about other OCF members. Im not a big facebook user, I use my facebook to further my OCF work and also mention my other projects. Guess that makes me pretty dorky but its just what I do.

Here is the link for our facebook list. If you would like to join, please reply on that thread and I will add you to our list.

OCF Facebook list
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148003 - 04/09/12 08:57 AM Re: Am I Crazy [Re: MargieL]
seattlepaul Offline
Contributing Member (25+ posts)

Registered: 02/14/12
Posts: 38
Loc: Washington
I've noticed, when I am lowest, that to smile at someone who is lower, makes me feel better, as well as the other person.
Smiles indeed do multiply, fester, and incite riot, in the crestfallen.
Much better than a pep-talk, because it's your own idea, it's the only thing I've found, that works from the inside out, and is 100% effective.
_________________________
69yo male, Steam Engineer, Me=4,SCC=0, loving wife, living life as it comes (no other option)
We are all born from Mother, but live and die alone.
Make the best of it, Mommie did all she could, daddy was just a guidance councelor, the rest is ALL up to you.
...and now, 3rd occurance: Surgery 5/1/12

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#148011 - 04/09/12 11:28 AM Re: Am I Crazy [Re: seattlepaul]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Yup, gotta agree with that, Paul - Smiling even when the other person is grumpy, and even if it doesn't get a smile back, makes them wonder what you're up to. smirk
_________________________
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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#148028 - 04/09/12 07:38 PM Re: Am I Crazy [Re: Anne-Marie]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
I always wonder if Ron will be off his pain meds but in reading on here I guess probably not. He will be going to Pain Management again and they try to give him damn Oxycontin which he is very mean when he takes it and I understand that it is timed release but HE IS MEAN when he takes them. I told him to tell them that. Also they tried something begins with an A that has morphine in it and that makes him itch. I think I need to go with him to talk to these people and tell them exactly what this stuff does to him. He is absolutely fine and content with his Oxycodone. Isn't that stuff like milder pain relief than having to go overboard with that Oxycontin crap?
_________________________
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08

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#148032 - 04/09/12 08:40 PM Re: Am I Crazy [Re: SUEZ]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
If he's itching he's allergic. That what they told me anyway. I had taken Vicodin for a torn hamstring. It was fine for a week or so, but then I would literally claw myself til I was bleeding. They said to stop it immediately.
Kevin took Lortab. He was in a GREAT mood from it. Just FYI.
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 10/12 and 10/13 and ct in 6/14

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#148051 - 04/10/12 06:45 AM Re: Am I Crazy [Re: KP5]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Actually Kathy itching is a common non-allergic reaction to most opiates. Here is a link to an article that explains it a little better than I could, however it has to do with the opiate receptors. It's an interesting read

http://www.sciencedaily.com/releases/2011/10/111013121516.htm
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#148062 - 04/10/12 07:37 PM Re: Am I Crazy [Re: EricS]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
Ya it's weird, cuz I have a cough medicine prescription for Hydrocodone I think it is and all of sudden when I took it before I went to bed when I needed it last time I started friggin itchin like crazy!! So I just thought it was me. So I had to take it again I only took it when I needed it for bad coughing spells WHICH I learned were really from my GERD and Nexium fixed that as well as my burning mouth! Whew I got scared there for a bit but anyway I took it again and damn if I didn't claw myself to near death again so guess what I don't take anymore! Yep. I have to read that up there Eric to find out why it just happened to me after all the years I've taken it before and it never happened. What is Lortab? Oh I'll look it up lol.
_________________________
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08

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#148071 - 04/11/12 01:49 AM Re: Am I Crazy [Re: SUEZ]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Really Eric? I will read up cuz' they acted like it could kill me and told me to stop taking it right away. Even if it wasn't that dangerous, the itching was so horrible even the pain was better. Thanks for the info!!
_________________________
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 10/12 and 10/13 and ct in 6/14

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#148405 - 04/17/12 07:52 AM Re: Am I Crazy [Re: KP5]
MargieL Offline
"OCF Down Under"
Supporting Member (50+ posts)

Registered: 06/19/08
Posts: 51
Loc: Coffs Harbour, Australia
Thank you all for your replies....some gave me a good laugh...which is probably what I needed.
the only medication which gives me some reprieve from the pain is Ordine which not takes he pain away but also makes me feel better within my self. I dont know what it is called in the northern hemisphere but will look it up and post it on here.
Margie
_________________________
SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.

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#149631 - 05/16/12 04:27 AM Re: Am I Crazy [Re: zengalib]
CubanKeith Offline
"OCF across the pond"
Contributing Member (25+ posts)

Registered: 04/28/12
Posts: 47
Loc: London UK
dear am i crazy, possibly you are? Mad as a brush?
I chose this thread because I wish to ask the same question? I am fairly new and am all set to start a 15 week journey into hell?
I have two lovely daughters 2 and 3 I used to run marathons and do Triathlons. I have no pain no discomfort but have squalumus cells in a lymph gland that resemble a Bollock.(But on my neck)I was feeling the centre of attention and (warpped thinking)enjoying a break from work? Lovely nice people looking after me. The point is are you saying was it all worth it and quality of life and all that?
It is always worth it, the grand children adore you,you gave up smoking,sound like you have let your drinking fall away, I would recommend a Mojito on a sunny day and a single malt maybe Lauguvalin when the melancholy hits and loose the casual give the whisky the attention it deserves. These are 'Big Man' times to scream at the Moon. Your post helped me.

Since they took out eight healthy teeth and I am looking at and just becoming aware that the Rad damage is nasty and long lastin.I have lost my sense of humour.
I want them to say its a misdignosis? I want to be there when my daughter is 30? Iam 53 now. If I run and hide and decline treatment do I get swallowed up by Cancer in 3 or 4 years?
Sorry if its all me me me.On your post. I am learning the protocols?
I cant even right a good present history.
Pets, cats enescopy = Barrets disease one week of oesophagus cancer nightmare me jumping the gun.Now its root of tongue pea shaped primary,large lymph node General> biopsi. HPV host with one lymph node SCC.
Next Thursday Picc line insertion.Then 6 weeks of chemo followed by 6 weeks of rad and chemo. I am going in painless and health and coming out a mess ??? Should I make a run for it??

[b]"I love you guys"[/b]








_________________________
21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.

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#149650 - 05/16/12 01:42 PM Re: Am I Crazy [Re: CubanKeith]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Cuban Keith
Quote:

If I run and hide and decline treatment do I get swallowed up by Cancer in 3 or 4 years?
YES and it will be more painful than you can even imagine.
Charm
_________________________
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13

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#149654 - 05/16/12 03:10 PM Re: Am I Crazy [Re: Charm2017]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Keith,

You're relatively young my friend and should be able to withstand treatment fairly well. Don't let fear stop you from not taking the steps to keep you from spending precious time with those you love. Treatment is the only way to beat this disease, a disease that will kill you in an extremely painful manner, something I don't wish on anyone, or any family to have to witness.

We all understand how bad treatment is, some of us like Charm has had to endure it more than once. Keep your chin up, walk the road to be with your family and let us help you through.


You got this.

Eric
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#149686 - 05/18/12 12:42 PM Re: Am I Crazy [Re: EricS]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Our experience on this site is that patients who refuse Tx are no longer associated with this world within a year and as Charm stated above this is possibly the last way I would want to die. Now please don't take this the wrong way BUT STOP YOUR WHINING AND EMBRACE THIS TX AND RID YOUR BODY OF THIS CANCER!!!
_________________________
David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#149702 - 05/18/12 10:05 PM Re: Am I Crazy [Re: davidcpa]
tamvonk Offline
"OCF Kiwi Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 03/11/11
Posts: 949
Loc: New Zealand
Yep. The time for self pity and denial has gone.
Time to just do it now.
You have to be here to see those little ones of yours grow up.
This treatment is very doable. We have done it . You too can do it. Hug your family, they need you.
Tammy
_________________________
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2016 4years post surgery .NED !

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#149707 - 05/19/12 12:42 AM Re: Am I Crazy [Re: tamvonk]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
But....don't believe for a minute we all weren't right where you are at one point. Once you start you will get the feeling that you are now in control because you are killing it and that's a great feeling. Without it, you will NOT be around until your daughter is 30.
BTW...Kevin was 52 when we started the battle. Turned 53 during.
We're here for you!!
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 10/12 and 10/13 and ct in 6/14

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#149804 - 05/21/12 02:14 AM Re: Am I Crazy [Re: davidcpa]
CubanKeith Offline
"OCF across the pond"
Contributing Member (25+ posts)

Registered: 04/28/12
Posts: 47
Loc: London UK
Okay Dad, Your only 5years older than me. But thanks for the solid advice. ?Are you the TERMANATOR on OCF?

"I'll be BACK"
_________________________
21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.

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#151496 - 07/02/12 07:45 AM Re: Am I Crazy [Re: MargieL]
MargieL Offline
"OCF Down Under"
Supporting Member (50+ posts)

Registered: 06/19/08
Posts: 51
Loc: Coffs Harbour, Australia
Thanks Charm for Patsy's words, and verybody else for your kind comments. I have just had a BCC cut out right on the scar on my neck from the SCC surgery maybe I could make up a song about it LOL, it was rather large by the time I got around to getting it cut out, but hell what is a scar on a scar, nuttin right? I am practising on getting my weird old sense of humour back I thought
it was about time to pick myself up, besides I have two of my grandkiddies coming to stay with us for a week, cant wait.

Magie
_________________________
SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.

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#151497 - 07/02/12 11:28 AM Re: Am I Crazy [Re: MargieL]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Keith, I betting you're on pain meds, I was a big dick when I was on them too. It'll pass brotha when you get off of them...unless it's a chronic pre-existing condition as in my case smile
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#151882 - 07/10/12 07:58 AM Re: Am I Crazy [Re: MargieL]
MargieL Offline
"OCF Down Under"
Supporting Member (50+ posts)

Registered: 06/19/08
Posts: 51
Loc: Coffs Harbour, Australia
_________________________
SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.

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#151886 - 07/10/12 02:06 PM Re: Am I Crazy [Re: MargieL]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 941
Loc: Ohio
Your youngest grandson sounds like a character! Glad you are picking yourself up - and have a great week with the grandkids. I will have my niece (the fancy attorney) up for a day in the near future, and I know I am looking forward to that.
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#152765 - 08/03/12 07:59 AM Re: Am I Crazy [Re: MargieL]
MargieL Offline
"OCF Down Under"
Supporting Member (50+ posts)

Registered: 06/19/08
Posts: 51
Loc: Coffs Harbour, Australia

thank you all for your comments, I have got over the "why me" for now it will come back again I am sure and I know I can come here and vent and get a good slap up the back of my head to get me back to "normal" Thanks and good luck to you all.
_________________________
SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.

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