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Joined: Feb 2009
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Sue B Offline OP
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Bob, I forgot to say Semper Fi back to you. I work with some of the best darn Marines the Corps has. I'm honored they allow me to work with them.


Sue - wife to John who was diagnosed with SCC of unknown primary in Nov 08 - TxN1MO - modified neck disection Dec 08 - currently in radiation treatments
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Sue B Offline OP
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Thanks to all for your support. With every day I realize I am going to need a place like this for support. My friends are great, most have been with me for at least 30 years - so I'm very comfortable discussing anything with the "girlfriends", but I'm begining to realize they won't be able to help me as much as ya'll will. Thank you in advance.
We did receive a second opinion, and it was socialized at the Lombardi Cancer Center (Georgetown U) and Johns Hopkins. All were pretty much the same. Surgery to remove the tumor, followed up with 5 weeks of radiation to both sides of the neck and throat. No chemo. One additional poi, he has been exposed to the HPV which has some correlation.


Sue - wife to John who was diagnosed with SCC of unknown primary in Nov 08 - TxN1MO - modified neck disection Dec 08 - currently in radiation treatments
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Posts: 10
Sue B Offline OP
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thanks Pete, where would I find the MD Anderson info on this cite? Remember, I'm very new to this cite, and have a very elementary knowledge of computers in general!!!!


Sue - wife to John who was diagnosed with SCC of unknown primary in Nov 08 - TxN1MO - modified neck disection Dec 08 - currently in radiation treatments
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Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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Carnation Instant Breakfast VHC is all he needs when the going gets tough. Plus agua of course.


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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Hey Sue, quick note - the PEG was a life saver for me but I felt like I had been kicked in the stomach by a horse for the first week or so.


Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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Hi, Sue, and let me add my welcome. I hate to say it but you are right about what's ahead being harder than the chemo was. Radiation plays havoc with everything in the mouth and throat. Taste buds, salivary glands damage and swelling of the throat will make eating nearly impossible. I just passed my 1 year anniversary of the start of treatment and still can eat only soft and sweet foods such as ice cream, jello and ripe fresh fruits. Ensure plus is my main source of nourishment still. Get your hubby to eat everything he can while he can. Best of luck to you both.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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Welcome to OCF. Best of luck to both you as the caregiver and your husband with the journey ahead.


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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hello, my husband was diagnosed was parotid gland cancer last week. it started with a lump in his neck and then the test and the dreaded diagnoses. he had a pet scan which showed a lesion on his liver and right humerous as well as lymph node involvement. he went to md anderson yesterday want him to start chemo and radiation, and remove the lympnodes to try and find the source he is 38 years old no history of ca or smoke i am just very scared and dont know what to do

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Hello and welcome to OCF Jenn. You will find lots of help and support to get you both thru this scary time. Ive heard thru other OCF members that MD Anderson is a terrific hospital.

Several things that will help you both to prepare are to have your husband eat everything he wants and as much as he wants now. It may be a while after treatment starts for him to regain the capability of eating easily. Dont worry about weight gain, do try to make his diet balanced. Take a notepad and pen to the doctor appointments to write down questions and their answers.

Look at other people's signatures and add some info about your husband when you get a chance. Its easy, just click on "my stuff" up top and then "profile" to make changes. Also you may want to start a new thread so we can fully address your questions and focus on your husbands issues.

Best of luck to both of you



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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