| 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 | Some poetic level....kiss our asses goodbye!!! lol
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Apr 2009 Posts: 128 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 128 | Kiss you ass good-bye as in dying? You guys are making me so afraid of the next three weeks, I think I may not visit until I am finished with treatment and just check in then! WOW!
Age 57 at dx on 3/30/2009 by Dentist SCC of R tonsil S2 Poorly Differentiated - 2.5 cm Rad - IMRT 5x a wk for 8 wks starting 5/4/2009 No Chemo Last Rad treatment was 6/26/2009. Two years down as of 3/30/2011! God bless all affected by this monster called cancer!
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Look we don't want to make anyone afraid of the Tx but we do want them to just expect that anything might happen and just be prepared. From my experience on this site only a small percentage slide thru this Tx with ease and likewise only a small percentage have a really really tough time but the vast majority of us start to quickly go down hill around the 4th week and emerge from our dark tunnel about the 3rd week post Tx. During those 6 to 7 weeks you just need to make sure you stay on top of everything, calories, hydration, meds and any problem that arises as soon as it does. All of us here today survived the Tx and we're not super humans but knowing what may lie ahead is better than walking into a storm unprepared.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Apr 2009 Posts: 128 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 128 | I agree it is nice to know what might lie ahead but don't you think using "kiss your a** goodbye" is a little strong or at the least a little un-called for? I'm just wondering how many other "new" people on this site got that message, and if they did what did that do to their mental capacity in this game? I am trying to get good advice and also am trying hard, very hard to keep a good mental attitude throughout this entire journey, and that little phrase just shook me! Maybe it's me being a little "thin skinned" due to where I am at in this process. Who knows????????????????????
Age 57 at dx on 3/30/2009 by Dentist SCC of R tonsil S2 Poorly Differentiated - 2.5 cm Rad - IMRT 5x a wk for 8 wks starting 5/4/2009 No Chemo Last Rad treatment was 6/26/2009. Two years down as of 3/30/2011! God bless all affected by this monster called cancer!
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | It is definitely easier to be more loose about the treatment once you went through this. While the remark taken as such is a bit strange please look how it came about. It started with the mine field, which sought to convey the message that you might get a surprise and cannot a priori predict how you are going to react. Which is, in a way, an apt description. After that the boys had fun with the mine field analogy. It personally helped me to know what MIGHT be ahead. Just imagine what you feel like if you assume that once the rads are over you are as good as new. For the large majority this is not the case and at least for me the week after the rads were over was most miserable/memorable.
Best
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Apr 2009 Posts: 128 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 128 | Markus,
As I said, I think knowing what to expect is great. I was just having an off day. At any other time in my life I would have thought the KYAG, would have been funny. I am very tense about the next three weeks of treatment and what lies ahead. I certainly understand that my sense of humor has changed a little and I can, at times, be pouncy and over reactive.If you don't believe me, just ask my wife. I DO want to be careful in the next couple of weeks and I will. Thanks!
Age 57 at dx on 3/30/2009 by Dentist SCC of R tonsil S2 Poorly Differentiated - 2.5 cm Rad - IMRT 5x a wk for 8 wks starting 5/4/2009 No Chemo Last Rad treatment was 6/26/2009. Two years down as of 3/30/2011! God bless all affected by this monster called cancer!
| | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | wfc,
I think your reaction was completely warranted!
And to Charm and the others...C'mon Guys!! 'Kiss your ass goodbye??' If someone had said that to you in the middle of your treatment, do you honestly think that would have been helpful?? Try to remember, a little empathy goes a long way.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | 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 had no peg either and ate while I could which really was n't long, becaue I was treated very agressivley thruout everything, I went from 220 dont to mid 140s. I am still only back up to 163. As for water, I still put down about 8 bottles of spring water a day. Some days more.
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: Apr 2009 Posts: 128 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 128 | Margaret,
Thank You! That's all I was trying to say. It is time for all of to let this go, I already have!!!!!!!
Age 57 at dx on 3/30/2009 by Dentist SCC of R tonsil S2 Poorly Differentiated - 2.5 cm Rad - IMRT 5x a wk for 8 wks starting 5/4/2009 No Chemo Last Rad treatment was 6/26/2009. Two years down as of 3/30/2011! God bless all affected by this monster called cancer!
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Margaret, you couldn't have said that better LOL Sounded just like me and I loved it.
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
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