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Joined: Jul 2007
Posts: 939
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jul 2007
Posts: 939
Denise,

Start paying attention to the signature lines from posters on this board. Many are 5 year survivors and beyond just like my hubby who had a pretty dire diagnosis and is here today alive and doing great. We all just stick around to give encouragement and information to people like you.

None of us will tell you that treatment will be easy but we all agree that it was the right decision.

Hoping for the best for you,


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
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Denise,

Fortunately I only had this crap once. When they discovered it I was already a Stage IV which is fairly typical of HPV+ SCC as a typical HPV+ patient usually presents them selves with an infected node or 2 and by current standards that's a minimum Staging of III.


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.
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Denise, welcome to OCF! Im glad you have found the forum. Its not always easy to understand exactly what patients go thru but we 'get you'. We have been there and gotten thru it.

One thing you may have misunderstood, most patients do NOT have recurrences. You may see many here with recurrences but that doesnt mean the majority of all OC patients will ever go thru it again. Just many who have had recurrences stick around and help others, while many who have been thru it once will go back to their pre-cancer lives and only stop back occasionally. Try not to worry about the statistics. Thats beyond your control and its just numbers.

Focus your energy on things you can control like good nutrition and hydration. Thats what will help you get thru this easier. Every single day take in a minimum of 2500 calories and 48 oz of water. If you are already suffering from anxiety, if you arent taking something for it please seek out someone to help. Many OC patients struggle with depression and take meds for the anxiety. Even some caregivers need a hand to get past this phase of their lives. Its better to get the help lined up than to ignore something that can make this whole thing more difficult.

Best wishes!



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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