| | Joined: Jun 2009 Posts: 64 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 64 | The drs. told us that the spit glands do not come back because of the radiation. Is this true or have other had theirs come back?
Pat
Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09
Chemo completed 6/19/09
Peg Tube 5/22/09
| | | | | 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 | Eric, thats so encouraging to hear you are doing so well with your eating. Sorry to hear about your latest setback with the recent surgery. Healing always takes time. Cant rush those things. Congrats on the PEG removal!!!! Thats a big milestone, you should be feeling so much better without it. I remember when mine was taken out, of course after my inital shock at the pain. I stood up and it felt so amazing that I could finally stand up striaght again. Best of luck with your continued improvements 
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: 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 | Pat, it takes the body a long time to heal from the effects of radiation. It can take about 2 years to bounce back to nearly the same as before. Most OC patients will carry a water bottle with them for years. I was one of the lucky ones and my saliva is very close to normal and I do not need to always have a water bottle. Just remember.....everybody is different.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | David, Christine, Jim, you guys are awesome thanks so much for the encouragement. I was/am nervous about not having the peg tube, I cheated though and had it taken out when under general anastesia when they were taking out the screws and some of the plate in my chin.
About the only thing I'm struggling with now is the chemical issue and that's getting better since they got me on steriods. I need to get off the pain meds too...not looking forward to it as I know I'm addicted, but I've kicked it before I can do it again.
Anyway you guys rock and I appreciate the hell out of ya.
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | 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 | Pat,
Without knowing more about your specific situation and exactly where and how much radiation each of your salivary glands received only your docs would even guess at that question and it may only be a guess for them as it's just near impossible for anyone to know how we will recover.
As Christine said the recovery can take all of 2 years and I wasn't satisfied with my saliva and taste until 15 months post Tx and I even think I saw a further improvement 24 months out so just sit back and relax and just don't listen to anyone that tells you dome and gloom stories and see what happens to 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.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | My Dr told me after I asked point blank about saliva, that I was right and it probably never return. I't almost 2 yrs now or will be Aug 3rd.
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: Jun 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | Pat, my saliva out put has come back pretty darn nicely. I had one of my glands removed via surgery but can go on walks now and other outings without having to have the bottle of water at my side. That was certainly not the case for several months following the end of tx.
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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