| | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I have to chime in about about losing taste for over a year. I didn't. My taste came back well before a year and I had the toughest type of radiation out there. I just don't want to mislead anyone into thinking that they won't be able to taste anything for a year, that's a scary thought!
Margaret, good luck with treatment and come here for all the help you need.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
| | | | | 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 | Yes I agree that the location is not typical of what they have reported as typical HPV primaries but given that I have been told the major causes of Oral SCC are Tobacco and HPV, I am just curious of how she came about saying that she suspected she was HPV negative. While it may be true (now) that HPV+ SCC is treated the same as HPV- SCC that might not be true later as more details are compiled about HPV. My RO made the statement to me that had he known that I was HPV+ he may have treated me differently than he did. I still have not gotten a chance to ask him what he meant but hopefully I will remember the next time I see him. I haven't seen anyone that posts that they are HPV+ being treated any differently and I'm not sure I would want to be the first guinea pig either but his statement was made. As everyone that reads my posts knows by now, I want to increase the awareness of HPV. It caused my life to be turned upside down and I had never heard of the Oral connection until it was mentioned on this very site. Recent studies have also indicated that there may be a better Tx outcome and a lesser chance of re occurrence with HPV+ SCC so if someone tests positive for HPV that may give their mental outlook a boost which may help them throughout their treatment and recovery. Right or wrong I felt relieved that I knew my cancer's cause and it eliminated a nagging question lurking in my brain. I also felt relieved when the results of the study were published so I want every non smoker to be aware of HPV as potential cause to their cancer.
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 | Wish my taste woulr return LOL but i am now a year out yet.
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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | David, Major causes does not equal ONLY causes. They are the only ones identified thus far. There's nothing worng with asking a new person if they've been tested for HPV but if they aren't interested, I think it's a good idea to LISTEN to what their needs are instead of insisting on your own agenda. Just a thought. Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | 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 | Margaret: I wish you the best of luck with your continued improvement. Eating is something that most of us struggle with after treatments. I hope you are able to find some nutritious high calorie foods that you are able to eat. Your body needs around 3000 calories per day to properly heal. I too had been a bit chubby before I went thru radiation and chemo. For me I wasnt too concerned about losing weight since I felt I had a buffer. I am now very thin and struggle with very low blood pressure and fatigue due to being thin. Please be careful with losing weight while being treated. My weight loss was not intentional, it just fell off from being so sick. Im glad you have a nutritionist and swallowing therapist working with you. They will be able to help you thru this transition of relearning to eat. 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 | | |
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