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Thanks Cheryl and that's exactly what we do best here - is answer questions. We also try to give you information that facilitates the questions that you will ask the doctors as well. We strongly believe that being your own advocate is the best way to go. Be sure to take very thorough notes at the appointments.

One more thing that I wanted to add about how RT works is that is alters the DNA of the cancer cells so it can't replicate itself and it just dies off. Normal cells are damaged as well but they have the ability to regenerate. This is another reason why RT is administered in fractions.

Chemotherapy should also be on the table as well. It is typically used as an adjunct to RT and can give as much as 15% additional 5 year survival rate. Cisplatin is the most commonly used and there are 2 types of treatment plans that we hve seen. Once every three weeks beginning with the first day of RT and weekly smaller doses. Chemotherapy, by itself, is not very effective in H&N cancer treatment but it has a good synergistic effect with RT.

The front end of this process moves very fast and many decisions have to be made in a hurry.

Last edited by Gary; 01-08-2009 01:45 PM.

Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Tell your H to eat everything in sight. All his favorite foods, fatty or not. Once he starts the rad he will loose his taste and his mouth will get to sore for solid foods so now is the time to stock up as it were. If he's like the majority of us, he will not regain his taste for many many months post Tx.

BTW I went to 5 different docs before I settled on a CCC which was 45 miles one way for my Tx. I pretty much drove myself except the last few weeks.

What did they say about chemo?


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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Check with the American Cancer Society...many of the CCC's have an ACS facility (Hope Lodge) on the premises that provide housing free of charge for the duration of your treatments. The one we toured at Moffitt in Tampa, FL was very nice...suites with living and bedroom area and nice bathrooms....several kitchens downstairs in a community setting, library, outdoor area, etc. There was no charge and no income questions...the only requirement was that you had a caregiver live with you in the "apartment."

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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CherylR Offline OP
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We will be getting lots of info next week from the hospital - will be there to finalize case plan early in the week. I am fortunate in that I only work part-time as it is and my employer is willing for me to flex my time as needed or just be gone. We are a small office and I will be reachable by cell so we're just gonna do what we have to and wing it. H is on medical leave from factory as of today. The treatment center is about 75+ miles from us and I'll be driving H (more than driving, I'm the one who will be pushing for answers and asking questions - 30 years in a law office does that to you wink We needed to pick a center within driving distance as we have guardianship of 2 grandkids, 7 and 4. We've rounded up our local support team (friends and family) to pick up the slack and given how fast this has moved we're in pretty good shape. Thanks for all the great support - I'm off to stuff H with lunch! And thanks for the info on radiation - I like to see stuff coming rather than be blindsided.


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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It is of vital importance that you have a coordinated medical team, consisting of at least an H&N surgeon, MO and RO. A tumor board should also add a great deal of reassurance as to putting all of your options, risks and benefits on the table. Having 3 doctors across town from each other is very risky business - not recommended.

You are wise getting a support team built up now. Churches are great resources for this kind of thing as well as the local ACS chapter. ACS will reimburse for mileage over 60 miles/day to a certain limit. Sometimes they can provide drivers as well. Have some back up drivers lined up. Take care of yourself and allow people to gift you with their help. Find people to give you some respite care as things progress. A cancer support group and/or social worker may be able to provide additional resources as well.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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We were fortunate that our local ENT referred us to H&N clinic in Indy. At the appointment H was seen by two surgeons, a dentist, radiation oncologist,and various students, residents, etc. Entire group then met to review and suggest tx plan. Radiation oncologist who was there will be managing tx, follow ups by H&N will be done in 4 weeks after radiation/chemo starts to determine if this treatment course is working.


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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After the Tx (assuming concurrent chemo and rad) begins H will not need a driver for at least 2 to 3 weeks, perhaps longer as each of us can respond differently. My numbers only but I say it's like a bell curve where 80% of us are OK for weeks 1 thru 3 and then we get progressively worse during weeks 4 thru the end of Tx (usually week 7) and then we are really bad for weeks 8 thru 10. Then a slow and very long recovery finally begins as we walk out of our dark tunnel. The other 20% is split with half really bad almost from day 1 and the other half hardly affected throughout Tx.

Have they mentioned which chemo(s)they plan using and how often?


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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Hi, I was wondering if I can get recommendations for the best topical treatment for neck burns. Richard is using 100% aloe vera gel from Walmart. I've seen the gels at the health food store and wonder if the quality is better. This one is made in the USA and is certified by the Aloe Science Council. What about Aquaphor, RADX, or Radiacare gel? Also, did anyone gargle or rinse with aloe vera juice?


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
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Most of us here used prescription creams from the radiation oncologist. For me aquaphor didnt work so well. Beta-Val cream worked the best. Make sure not to have creams or lotions on your husband prior to radiation. I would plaster it on in the car on the way home for treatments. Surprisingly I have no scars at all, even though at the worst my neck was pretty bad.

Never heard of the aloe vera juice. Most people here stick pretty much to the Biotene products. They dont burn your mouth and they have everything from dry mouth spray, to toothpaste and gels.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
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 xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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I didn't have much of a "sunburn" from the rad but Aquaphor did the trick for me. Like everything thing else associated with this Tx just try until you find something that works for you.


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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