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I'm not sure Ina, but the doctors must have considered this. Mine were not bad on my face at all, more on my arms, legs, back, scalp, probably from dryness too, and were just itchy. Maybe a day or two for my face. which was immediately cleared by the antibiotics. They can always stop the infusions, if too severe, and just do radiation, maybe restart Erbitux again, Someone can ask the doctor this about this. You, your family are in my thoughts, and prayers.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Posts: 945
"Above & Beyond" Member (500+ posts)
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My husband found that Eucerin's Aquaphor helped a good deal. Best wishes,
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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Posts: 143
Ina Offline OP
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I have been reading some post about radiation and it seems that it is more painful and uncomfortable than chemotherapy. Based on what i heard which I will confirm this week, is that Joyce will get the maximum amount of radiation at the site of her new lesions/tumor. I wonder if the fact that surgery will not performed before radiation would that make the open lesion wound bigger? Was it right not to push for surgery first? Both oncologist and surgeon did not want to proceed with the surgery. What factors could have triggered that decision?

Thanks guys!!


Joyce March 1940 to January 2014
A wife, a mother, grandmother and great grandmother.
She fought oral cancer from late 2009 to Early 2014.
2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
Joined: Oct 2012
Posts: 143
Ina Offline OP
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[quote=PaulB]I'm not sure Ina, but the doctors must have considered this. Mine were not bad on my face at all, more on my arms, legs, back, scalp, probably from dryness too, and were just itchy. Maybe a day or two for my face. which was immediately cleared by the antibiotics. They can always stop the infusions, if too severe, and just do radiation, maybe restart Erbitux again, Someone can ask the doctor this about this. You, your family are in my thoughts, and prayers. [/quote]

The main reason they are giving her Erbitux due to her failing kidneys. According to her doctors during her cisplatin chemo her kidneys reached stage 4 (life expectancy), last step towards having a dialysis. Her potassium level is so high that is why it took more than a week to schedule the peg tube. If things don't change she will have the peg inserted on Sunday.





Joyce March 1940 to January 2014
A wife, a mother, grandmother and great grandmother.
She fought oral cancer from late 2009 to Early 2014.
2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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My kidneys are not good either, and main reason why I had Erbitux last time. Nothing else was really considered. Had high potassium just two weeks ago, and in the past, but is normal now. They can bring it down, hopefully. Good luck.

Last edited by PaulB; 05-24-2013 12:45 PM.

10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Posts: 638
klo Offline
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[quote]Both oncologist and surgeon did not want to proceed with the surgery. What factors could have triggered that decision?[/quote]

Hi Ina,

so sorry to hear of the troubles with Joyce. It must be so difficult trying to help from thousands of miles away in addition to trying to navigate a different health care system

To answer your question above: It is likely that the oncologist and surgeon think that the risks of surgery are higher than the potential benefits with Joyce's other medical issues (kidney function and nutrition/weight). Maybe once chemorads are completed and successful, and she regains some health (weight and kidney function) they may consider surgery if they think it necessary??

I personally would not be worried too much about lack of surgery - chemorads might well do everything that can be done.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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Patient Advocate (old timer, 2000 posts)
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Everyone is different in the type of treatment, which should be geared towards that person, cormorbitiess, condition, so there is no right or wrong. As mentioned, the kidneys factor in, probably anemic too, and the risk of surgery probably outweighs the benefit. maybe even waiting to see if the tumor shrinks, and then plan to do a less invasive surgery. Radiation may actually help heal some wounds.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Posts: 5,260
Likes: 3
"OCF Canuck"
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Hopefully things will go well for her. Rads and chemo will be hard - very hard - but as it is she is already suffering so hopefully they will give her meds to take care of her pain. Hugs and best of luck to you, her and her family.


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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Ina Offline OP
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[quote=davidcpa]I really think (purely based upon years on this site) that they need to forget the PEG; forget this surgery and try and make her as comfortable as possible until the end which I believe is very near.[/quote]

Update: Peg has been inserted, however, she is fighting an infection of some sort and still at the hospital with fever.

Due to financial issues, the treatment is in limbo. From experience here in the forum, with no treatment what is the prognosis?

Last edited by Ina; 05-29-2013 08:23 PM.

Joyce March 1940 to January 2014
A wife, a mother, grandmother and great grandmother.
She fought oral cancer from late 2009 to Early 2014.
2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
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Please remember that none of us are doctors much less docs that specialize in oral cancer and add to that that we haven't even seen Joyce so all we can do is post based upon our experiences on this site. In the 6 to 7 years on this site I have read many posts where break throughs have been discussed and in each case the time to end was very short, as in months. I hope I am reading this incorrectly. The fact that her docs, who do specialize in oral cancer and are much more familiar with her and probably have seen others like her, still want to treat her cancer aggressively should give you reason to trust their judgment over my guessings.


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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