#91895 03-16-2009 05:02 PM | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | You can tell it's St. Patrick's day eve and sure my sainted Irish grandmothers are working overtime in Heaven. After all the "MedStar Mayhem" at Georgetown Univ Hospital in DC, I switched over to Inova Alexandria Hospital in the Commonwealth of Virgina for my speech and swallowing therapy. Wow: parking is validated and free (GT validation reduces it to $4)plus at my first session today, they noticed my Trismus had returned big time (down to 21 instead of post radiation 35) so they suggested the Therabit device. Not worth the money I say, and they say: oh it's free - some generous donors bought some for our cancer clinic. Got to go now and do my 7-7-7 exercises. Up to 24 already.
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 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 |
I know you are going thru a rough time right now. Your posts show a much different tone than the happy person going off to Italy. Remember the posts telling about your wonderful trip. Im so sorry you are struggling at this time of your life. Its truly an awful disease that saps the life right out of normally happy people. Very sad.
Please remember you are still a very fortunate person. One thing that caught my eye was your mention of trismus. Being a 21 is still pretty darn good if you ask me. A 21 is limited but not severe and you may be able to get back to the 35, or maybe close. Ive had such a hard time with trismus, I was a 4. At my best with all the physical therapy I only got to 12. Now, you see why I say you are lucky? If I could ever get to even 21 it would be a miracle.
Sending good thought your way.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Thanks for the reminder Christine. Having just struck midnight and started St. Patrick's Day when everybody's Irish, are ye ne "cailin" (* used by the Irish in the USA and Australia as a way of connecting to their Irish roots.) I am fortunate indeed. The recurrence caught me off guard, like an uppercut to the solar plexus and it is especially inappropriate on a forum like this to forget how much worse it could be. Funny you mention Italy as last night as I watched the steady drip drip drip of the gravity feed while my wife ate her dinner,and we reminisced about the wonderful food in Rome. Praying for a miracle for you.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | If anybody is wondering what Christine and I are posting about: Trismus and the Therabite, Brian has already spelled it out for you on the other parts of the OCF site Trismus & Therabite The numbers are measurements of how wide your mouth opens. 24 is about two fingers .
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: 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 | My mother was as Irish as they come (O'Gorman) and my dad was as English as they come (Hastings) and the fun and fur followed their marriage. No wonder I'm so screwed up!
Happy St Patrick's Day
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Speaking of St P's Day. We are really celebrating it in my section of Florida as EVERYTHING is green outside (and a lot inside as well) due to all the oak trees pollinating themselves. We are all suffering. Ugh
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Christine, I am like you--getting back to the 20s would be amazing for me. I remember back when I started using the therabite I was at 23-25 and I thought that was bad but when I stopped for a few months I went down to the teens and have never gotten over 20 again.
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"
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