| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | David is hard to embarass. LOL He is one great guy and makes a good friend too. I hope to one day meet David and many others here. They keep me straight aftewr wll the treatments I have been thru. They keep a smile on my face. Good luck with ther treatments. I have been from the NMountains of W Va to the flats of Ohio State plus 4 more for treatments and have never had a bad Dr. Well one that maybe thought I was kind of old. LOL
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: May 2010 Posts: 18 Member | | OP Member
Joined: May 2010 Posts: 18 | I'm going to Moffitt tomorrow for a 2nd opinion. David is meeting me. Oh, the questions I have!! I will keep all of you posted on what is going on. And maybe as I go further and get more knowledgable, I can mentor someone new myself. I saw my dentist today for my mouth survey - to see if good for radiation. TG - it was good. He said this is just a hiccup in life. So true.
Talk to all of you soon.
Sandy | | | | | Joined: Apr 2010 Posts: 45 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2010 Posts: 45 | Hi Sandy - my oral surgeon said the exact same thing and here I am 7.5 years later - no recurrences and healthy! Congrats and keep us posted.
2002 - SCC - T1N0M0 - ever vigilant
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Good description! Good luck to you and hope you sail through treatments and get better soon.
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Sandy,
"You are in good hands with David".
He is one of the most compassionate people I have ever met and he will help to get you through this.
You did spell oncologist right. And we don't care how you spell anyway. You've probably read some of EzJim's posts. We do make fun of him, though.
BTW, I've tried to embarras David and it never works.
Good luck today.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: May 2010 Posts: 18 Member | | OP Member
Joined: May 2010 Posts: 18 | Hi all,
Well, I met with David and Dr Trotti on Friday. It was alot for me to absorb. Apparently, the cancer has an 85% cure rate, but because of the location, the residuals could be bad. Example - difficulty swallowing and possible loss of voice box if the radiation isn't done exactly right. I really wanted to have this done close to home. But after much discussion with David and my husband, we have made the decision to go to Moffitt and Dr Trotti to have the treatment done. As David says, "it's only 7 weeks". (Why does that seem like a lifetime) I will keep all of you posted.
Take Care,
Sandy | | | | | Joined: Apr 2010 Posts: 45 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2010 Posts: 45 | Sandy - doesn't it make you feel comforted to hear those big percentages on "elmination" rates of this type of cancer. I'm so happy for you that you're comfortable with a plan of attack and that you're going to be able to get this ball rolling. I'm going to put David in my mental rolodex if and when I ever again need an authority on getting the correct information and strategy - I think someone said that next year at this time you'll be mentoring other new patients on the course of treatment and coming out the other side stronger.... keep all of us in the loop and let us know about your progress - 7 weeks - less than 2 months and you'll be treated by one of the best - how can you lose = 49 days of your life? - I would SO BE THERE! lol - Now you can finally exhale!! YOU take care
2002 - SCC - T1N0M0 - ever vigilant
| | | | | Joined: Sep 2009 Posts: 53 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 53 | Hi Sandy, as your see I have been through the system of radiation and chemo at the same time and come out the other side, recently.
Let me tell you, the worst that you can go through and you can come through it, even though you may feel at your worst some times.
The funny thing is, as your see if you read my story, I was not to worried until I started the radiation and then the chemo, at the same time.
First horrible thing was, I had no appetite, so did not was to eat or drink for 3 weeks, so I lost 27kg, 2nd was all the flem that I was spitting up, pots of it. 3rd nasty thing, was the sickness I had to endure 24 hours after taking the chemo, that really drains you, if your not having chemo, you will not be so affected, you may feel sick and have the flem, but the worst is the sickness. I had 8 weeks of nastiness and the after effects are no taste buds, everything you eat taste a combination of iron filings and parrots droppings, and your apatite is nil.
So you basically goe through 2 months of uncomfortable feelings, then you slowly get better and now I have my taste back 90% and my weight back, better than before, everyone says I look fabulous lol so your get through it, just hang on, its going to be a roller coaster ride, at the time your feel bad, but remember! your be fine after, just tighten your seat belt, as my Doctor said we are going to hopefully cure you, so just don�t worry to much, with the new treatment now your live through it?
"Base of Tongue Cancer", may be HPV cancer. swollen lymph nodes, half the tongue base Now T2/3 N2 MRI scan and simulation mask, 4 Chemo/35 rad of 35. Tumors gone. can eat. MRI April 19th , Nodes now all gone, was 6 cm, weight GAIN to 81 kg but found 2.1 grey area on MRI. Biopsy next.
| | | | | 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 | Sandy Sandy Sandy,
I am so relieved that you and Dan made that decision.
Now get with Karen ASAP and see if they can get you in Wed and get the ball rolling. Also start the ball rolling with the Hope Lodge as I'm sure there's some RED tape involved.
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: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Sandy, sounds as if you're in the best of hands and have made the wise decision. We're all here for you.
David: to say you do the name proud is an understatement. It brings tears to my eyes.
D2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | |
| Forums23 Topics18,170 Posts196,933 Members13,105 | | Most Online458
Jan 16th, 2020 | | |
|
