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I agree with getting the chemo concurrent with the rads, The rads create by far the most direct and collateral damage. As the platimum based chemos are radiosensitizers that improve the effectiveness of the rads, I am not sure if the concurrent treatment creates more side-effects than just chemo alone.

My surgeon's matra is to go aggressive as you do not want to see any recurrence. Your first trip through offers the best treatment outcomes.

Good luck
Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jul 2012
Posts: 3,267
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Patient Advocate (old timer, 2000 posts)
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Not really disagreeing about having chemo, but for me, it was 10x worse than rads, and that's an understatement. I will never fully recover from it, and will never underestimate it again, like I initially did. Even still, I had chemo my last treatment, and weighed the risks with the "light chemo" lol. Light was another joke, I had to buy a shower seat, and use a walker again due to the weakness, neuropathy, hospitalized for hydration, and blood transfusion. For my 2nd and 3rd recurrence, my doctor would not do chemo, said it would have killed me.


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






Joined: Jan 2013
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Hi Paul,

As we all know the mantra, YMWV - Your Mileage Will Vary, so each person and each situation creates a unique outcome; even same person, same treatment may experience different outcomes.

I only state what I generally observe and that is far fewer get away unscathed from the harsh beam of the rad gun while the side effects generally are less from chemo.

No biting please,
Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Don, I didn't even see your post when I was writing, and was not responding to you. I know everyone is different, and a number voiced chemo to be less a concern basically, no problem, and voiced my opinion, and I'm one that doesn't agree, that's all, and living proof. Most who went through what I don't survive, and neither was I expected, so there may not be that many around to say anything about chemo like i will for a number of reasons. These are some of the ailments I had suffered from chemo:

All fingernails, toenails came off, burns on hands, face & inside mouth, paralyzed fro the waist down, abdominal pain, septic shock, sepsis, respiratory failure, pulmonary collapse, pulmonary congestion, intestinal disease, excisional debriment of wound or burn, disseminated candidiasis, unspecified septicemia, periumbilical abdominal pain, hypotension, drug induced netropenia, urinary tract disease, pleural effusion, hepatomegaly, gastric dysfunction, gallbladder disease, ulcerative colitis, pneumonia, cardiomegly, unspecified volume depletion, low potassium, kidney disease, hyposmolality, nutrional marasmus, debility, dysphaigia, phlebitis, systemic inflammatory response, syndrome, other erythematosquamous dermatosis, ulcerative gastrointestinal mucocitis, antineoplastic immuno supprs adverse effect, anemia, iron meatbolsim disorder, shortness of breath, localized inflammatory process whole body, unspecified infection central venous line, critical illness myopathy, brain ishemia, other ascites, joint pain, cellultis, mononeurotis, gait abnormality, pressure ulcer, rhinoschleroma, conjuntivitis, diarreah, nausea, hypovolemia, blood transfusions, renal failure, low potossium, acidosis, leukocotosis, C-diff.

Btw, I like your sign off, don't bite smile


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






Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
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you missed one side effect - you grew fangs and yap like a chiwawa. :-)
oh sorry - that is two, yes I can count

Last edited by donfoo; 03-16-2013 02:33 PM.

Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
That's ok. I paid my dues. You still have a long way to go, and hopefully you will not grow any fangs smile


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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Posts: 638
Hi Mark

My Alex suffered dreadful anxiety before each new treatment because he didn't know what was coming. Immediately afterward, he was all sweetness and light because the treatment was NEVER as bad as he imagined.

Remember that the radiation therapy itself does not hurt and it will hopefully be a couple of weeks or more before you start to feel the effects of ulcers and burns. It comes on gradually so you can manage it with pain killers and special mouthwashes.

The only thing you need to deal with is the mask. Other posters have covered the use of anti-anxiety medication, self meditation techniques etc so I will not repeat.

Alex found that imagining those radiation beams blasting the cancer actually made him feel like he was doing something which caused him to almost look forward to the treatment. He actually fretted when the machine broke down (which it did often) and there was a chance he wouldn't get radiation that day. Even the mouth ulcers which developed around week 3 were seen by Alex as a sign the treatment was working. Once he was comfortable and familiar with the routine he played a game with the machine, predicting where it would be when he opened his eyes.


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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"Above & Beyond" Member (500+ posts)
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Hi, Mark,

My husband had significant anxiety regarding rads and ATIVAN was prescribed for that. He took 2 pills before we left the house. By the time he was ready to get bolted down he was very relaxed and even slept a bit. Do what you have to, to get through it.


All the best-
Anita


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
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Posts: 14
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The rad staff has been just wonderful! Make an appointment with the cancer center and meet the nurses, doctors, techs, nutritionist...etc.. We found that since they have been thru this they know what the process/outcomes are. Plus they have a magic closet, so can get you samples of products so you don't have to buy from the drugstore and have it not work out.
Chemo was recommended to be given early in the week so that it was more effective with rad.


Joanna - caregiver (spouse) Init bio 11/12, gloss/neck dis 12/12, rad/cisplatin - 6 wks 2/13

"The most important thing is to keep the most important thing, the most important thing."
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Mark

I have had 14 treatments of RT. I have the same issues. Actually I have 3 demons. I cannot sit still, I am claustrophobic and I have gag reflex. They stick a tongue depresser in my mouth to keep my tongue down.
My radiation oncologist prescribed lorazepam 1mg for the anxiety. I took it 1 hour before treatment and it worked like a charm. I stopped taking it after 7 treatments.
Hope this helps

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