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#147266 - 03/18/12 06:11 AM Am I Crazy  
Joined: Jun 2008
Posts: 51
MargieL Offline
"OCF Down Under"
MargieL  Offline
"OCF Down Under"
Supporting Member (50+ posts)

Joined: Jun 2008
Posts: 51
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.
#147267 - 03/18/12 09:57 AM Re: Am I Crazy [Re: MargieL]  
Joined: Dec 2011
Posts: 60
lam007 Offline
"OCF Down Under"
lam007  Offline
"OCF Down Under"
Supporting Member (50+ posts)

Joined: Dec 2011
Posts: 60
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.
#147271 - 03/18/12 03:51 PM Re: Am I Crazy [Re: lam007]  
Joined: Jul 2011
Posts: 945
Maria Offline
"Above & Beyond" Member (500+ posts)
Maria  Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
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.
#147276 - 03/18/12 05:16 PM Re: Am I Crazy [Re: Maria]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
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
#147284 - 03/18/12 08:00 PM Re: Am I Crazy [Re: MargieL]  
Joined: Jun 2009
Posts: 875
julieann Offline
"Above & Beyond" Member (500+ posts)
julieann  Offline
"Above & Beyond" Member (500+ posts)

Joined: Jun 2009
Posts: 875
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
#147289 - 03/18/12 11:58 PM Re: Am I Crazy [Re: julieann]  
Joined: Feb 2005
Posts: 118
ZendaT Offline
Senior Member (100+ posts)
ZendaT  Offline
Senior Member (100+ posts)

Joined: Feb 2005
Posts: 118
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.
#147349 - 03/20/12 08:19 AM Re: Am I Crazy [Re: ZendaT]  
Joined: Jun 2008
Posts: 51
MargieL Offline
"OCF Down Under"
MargieL  Offline
"OCF Down Under"
Supporting Member (50+ posts)

Joined: Jun 2008
Posts: 51
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.
#147354 - 03/20/12 01:21 PM Re: Am I Crazy [Re: MargieL]  
Joined: Jun 2007
Posts: 9,467
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,467
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
#147363 - 03/20/12 05:07 PM Re: Am I Crazy [Re: ChristineB]  
Joined: Jul 2011
Posts: 945
Maria Offline
"Above & Beyond" Member (500+ posts)
Maria  Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
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.
#147364 - 03/20/12 05:16 PM Re: Am I Crazy [Re: Maria]  
Joined: Nov 2009
Posts: 493
zengalib Offline
Platinum Member (300+ posts)
zengalib  Offline
Platinum Member (300+ posts)

Joined: Nov 2009
Posts: 493
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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