| | Joined: Jul 2009 Posts: 1 Member | OP  Member
Joined: Jul 2009 Posts: 1 | I'm 58 never been in a hospital except for physcials or little non serious ER's. Never smoked or any heavy drinking ever and here I am. I have nasopharyngeal carcinoma, which has also affected 3 lynp nodes. Today was the first, 30 minute, 22 point radiation treatment, to continue 5 days a week, for 7 weeks. Chemo,started today 4 hours long "cisplatin", once a week for 7 weeks. Everyone was great,everything went great, i have a great support team around me, 7 great kids and life time soulmate all praying and pulling for me.  | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Andy, welcome to OCF. Im sorry you are going thru this. Its wonderful to hear you have such a great support group to help you. We will be happy to assist you with answering your questions and helping you thru this journey. Best of luck
ChristineSCC 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 | | | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 114 | Hi Andy
I'm 52. Single, workaholic and know few people very closely. I am stll spinning after hearing those words in June. I am new here as well and just wanted to say that here is good. People have been generous with informaton for me.
Got my radiation simulation today. 6 weeks - 5 days a week.
Last edited by hisnibs; 07-23-2009 06:33 PM.
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Hi Andy and welcome to our home. You seem to have a great attitude going in. That is a part of our war. You have it and keeping it makes things easier. Good luck and keep us posted. With all of the posters you will find here, there is some wisdom, learned the hard way - listen to them too, it helps.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Andy,
Where are you being Tx'ed?
Where in Florida are you?
This is the BEST site for you. Ask tons of questions and rest assured we will be with you every step of the way.
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: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Hi Andy and Welcome. Sorry you have to be here but you found the best place for support and information. I understand the "shock" of it all hearing those words and having it sink in. My 55 year old husband never smoked anything, casual drinker and had never even been sick, or to the ER let alone in a hospital as a patient. Feel free to ask any and all questions. Someone here will most likely have the answer. Best wishes.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I would have bet mine was from HPV because I was always a ldies man since the age of 5 or 6 LOL But not that or cigarettes. Just a unique cancer. Why is it I always have to be different? LOL There is one thing in my favor, I got to meet all of you plus a lot more. You all are the greatest.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | EZJim Well, even though I was saving myself for God in the seminary studying to be a priest and remained a virgin until 21, I made up for lost time with 15 Summers of Love. The Lord showered over half a hundred "if you can't be with the one you love, love the one you're with" loves upon me yet my tumor came back negative for HPV. For the last 26 years, I have had been very happy to be totally faithful to my wife as I had sown my wild oats and then some and finally appreciated just how beautiful "FOREVER" could be. Andy To bring you as a "newbie" up to speed: HPV is a hot topic here at OCF as it sponsored research that proved the new surge in oral cancer comes from HPV infection. EzJim and I both are in the ironic position of wishing we did have this particular STD as HPV oral cancers seem to respond better to radiation and chemotherapy. Moreover, at least on this board, nobody with documented HPV oral cancer has fessed up to a recurrence. I started a threat a while back to see if this ancedotal "knowlege" was true and so far all of us where the cancer came back did not have HPV.
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Andy,
Welcome to OCF. It's great to hear what an awesome family you have to support you. I have a great husband and 2 wonderful families (his and mine:) The people here are great too.
I know what you mean about saying "cancer" I used to say "When everything happened to my tongue" Looking back it makes me laugh but it took a LONG time for me to say my name and cancer in the same sentence. It's still hard for me. When you say it people look at us different I feel like.
I wish you luck in your treatment.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Apr 2009 Posts: 75 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2009 Posts: 75 | Hi Andy:
I am sorry about you diagnosis. However, you are lucky to have found this forum. Everyone here is so helpful and kind. I will keep you in my thoughts and prayers. You will be cured.
Take care,
Boston
Squamous cell / BOT with lymph node involvment, Stage 4, HIV-, cisplatin 3 weeks of 7, stopped due to kidney issues and neuropathy,35 radiation treatment started 5/6/09,started weekly erbitux on 6/2/09. Completed tx on 6/24/09, biopsy 8/11/09 clean, PET Scan 10/5/09 clear, PET Scan 6/11/10 clear
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