| Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Today it has been exactly 3 years since the last IMRT session. Except for the usual post treatment hiccups and scares things have progressed very well. ..to the point where the checkups almost become a nuisance.
This is my second attempt at this, the first one was rudely aborted by "Siegfried" (red tomcat) the newest addition to our ever expanding menagerie (7 cats + 1 dog).
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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Markus, nice to see you posting. Congrats on your 3 year mark. Glad to hear you are doing so well, keep up whatever it is you are doing right Did you put a pic of your latest kitty on FB? I still love your original scared kitty pic 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 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Hi Christine, I have not put him on FB yet, but I will together with the other "scared" kitty (now doing most of the scaring himself). Re doing.... everything just a bit more deliberate now. I.e. food or teaching or writing a paper. This I consider positive.
M >>> posted now
Last edited by Markus; 07-18-2010 05:44 PM.
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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Congratulations on the 3 years Markus..Kitties are cute too
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | 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 | Great milestone Markus!.
Funny I was just thinking as I'm trying to type and read...."why is it that my cats always want to sit right in front of my computer monitor and want to walk on my keyboard?" and then I read your post.
You need to step up though, 7 and 1, we have 8 and 2 (80 lbs each) and 1 rabbit.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Congratulations Markus. Posts like yours are very encouraging to the newer members of OCF. You and David are Avatars of Hope that they can not only survive TX but also thrive afterwards. Charm 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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Hello Marcus: A BIG congratulations on your 3-year success. That's great! I would like to see your kitties on Facebook, but couldn't find your Facebook name listed on Christine's list. Let me know how to "friend" you so I can see them. I'm Julia Bouvier on Facebook. Thanks, and again, CONGRATULATIONS! julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Thanks guys! David 7+1 is quite enough. This is not counting the "grandcats" that periodically turn up. The cats are very "domesticated", to the point that even though they can go in and out as they please (hunting trophies)* they prefer to use clean kitty litter. ......
* at least the current bunch goes for bigger game, previously they brought in worms, ever tried to worms to get out of a carpet? They also realized putting their prey (mice & chipmunks) in the bathtub guarantees endless fun (for them). Of course, as soon as I see this I rescue the poor things.... trying to get a chipmunk unharmed out of a drain is an experience by itself.
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: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | Congrats on the 3 year mark!!! Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | 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 | We used to be able to let our cats out and of course fought them to get them back inside but 2 yrs ago coyotes invaded our community and ate one so since then they are confined to the inside.
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 2010 Posts: 60 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jul 2010 Posts: 60 | Hurray for animals! I was sitting down early this morn after my first chemo and radiation yesterday and getting great comfort from my sweet Shiloh (border collie/boxer/lab mix) sitting next to me on the couch with her head in my lap. We have 1 dog and 2 cats so I guess I really need to step up.
Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Susan,
I wanted to keep a few things the same, no matter what, when I went through treatment. One thing I did was walk my dog every night.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | Congrats on 3 years Markus! Having just passed that milestone myself, I understand the feeling. No cats to interfere with posting, but two dogs, including a 13 year old purebred Lab who delights in toppling over my wastebasket and/or stealing papers from my desk and hold them hostage for treats. ;-) Jeff SCC Right BOT Dx 3/28/2007 T2N2a M0G1,Stage IVa Bilateral Neck Dissection 4/11/2007 39 x IMRT, 8 x Cisplatin Ended 7/11/07 Complete response to treatment so far!!
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Animals are a great comfort. The time I was at home I had a constant companion in Hannibal (Chihuahua). Looking at my shredded arm it might not be a good idea to have a little kitten during treatment because of infections.
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: Aug 2006 Posts: 199 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2006 Posts: 199 | Congrats on your 3 yr anniversary, Markus! I was just thinking about you as I've been asked to talk to someone here in Atlanta newly diagnosed, who's apparently tried to get a second opinion at Emory, where you were treated, but isn't having much luck. I am going to call him today. I want to encourage him to get on the websire and the forum, so he can learn from all this great information and folks like you! I may cntact you again once I understand what he's done so far if advice/info in Emory is needed. If you recall, I was treated at MDACC but I think that might be very difficult for him due to travel, etc.
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | By all means, please do, I am happy if I can help.
My treatment was sort of strange. I went to an ENT in Griffin, then for follow up and surgery at Emory. There the surgeon told me after surgery that I needed radiation as well. My petscans were in Fayetteville and PEG/port in Griffin. My first MO tried to "kill" me in Fayetteville. The dentist is in Griffin he also made the tongue depressor to keep the thing in a defined location during IMRT. I then had radiation in Griffin at a brand new IMRT facility and Chemo in Lovejoy. This sounds crazy, it worked for me since the wife is an MD and all she knows all the "players". They coordinated extremely well, the RO took over after surgery and successfully arranged the PET/CT scans. (Emory had problems doing this). Following radiation the focus shifted back to the oral surgeon/ENT. He is clearly more familiar with the tissues. The MO was only involved during the chemo regimen which he coordinated with the RO. At this point I just see the RO once every year while the surgeon sees me 2-3 times a year. In general, I would not recommend this crazy scheme. I was very happy with my surgeon at Emory and also with the RO. If I had to choose one place only in the Atlanta area it would have to be Emory. I just do not know the other places.
Hope that helps. PM me so we can talk names.
M
Last edited by Markus; 07-25-2010 12:01 PM.
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.
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