#93334 04-07-2009 12:08 PM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Dr just called and gave me this schedule for April, the 13th I see him at his office at 9:30 AM. The 15th I meet with Anesthesia to do their thing with me,, we all know what that is, lots of quick questions and listening to the heart and lungs ETC at 7:15 AM ... The 17th I am scheduled at 10:45 for the surgery to get biopsies of my tongue. He hsa to check under it too where it hurts so bad.There is all I know . I guess that didn't make any of us smarter 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: 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 | Just a routine week in Jim's world.
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 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Hi Jim- Thinking of you today and will put in some big prayers for you on those dates especially... Hugs K
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Great to have a plan and be moving forward Your angels are on duty - no need for YOU to worry!
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | As soon as I hung up another Dr called to schedule me for my 3 month scope. Haven't been scoped that way since last Sept. He is getting worried. He has to wait for the OK t o do it from the other 2 now. We play a lot of let's put Jim to sleep. LOL As long as I win, it's ok.
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Well Jim at least agonizing waiting part is getting closer to over right? From what I understand they will just be doing your biopsy on 4/13, but not surgery yet right?
I will start praying even more for you each day.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | 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 | Wow you sure have alot of appointments comming up. Hope today was a good day and you felt ok. Take it one day at a time. Tomorrow will be better 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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Thank you ladies.. I am scheduled for the biopsies the 17th. I think he is taking them from different areas and is going to put me to sleep. Under my tongue, in my tongue, right jaw, maybe ear in that cartoid and seeing as I will be sleeping anywhere he wants. LOL. Both sides of my throat too. He can feel something there too.
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 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | EZJim,
Sorry to hear you are having to walk through this again!! Know that all of us will be thinking of you. We will all pray for the best.
Take care.. Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | Joined: Aug 2008 Posts: 113 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2008 Posts: 113 | EZJim---I marked my calendar so I remember to send xtra prayers your way---Now everyone is going to wonder who you are. Of course my husbands name is Jim, so I can get away with it...LOL Speaking of my Jim, he has a drooping bottom right eye lid, which means another MRI this Friday. The doctor said it's either from the cyberknife treatments or --------possibly a malignancy moving up. So, here we go again........One frightening day after the other. If it spread to his brain, I don't know what I'll do. There's not too much left of my already shattered heart. You all take care and say one for my hubby, too...............Claudia
Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Jim
Thinking of you and wishing for positive outcomes with your appointments.
Claudia
I'm just shaking my head in disbelief. I'm speechless at just how cruel and never ending this horrid disease can be. I know I'm stating the obvious but, it's just not fair.
So sorry to hear that you and Jim are still having to deal with even more of this.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Claudia, you are the one that is brave here . I read your posts and yourself and Jim are going thru this war together. We all need someone to lean on and Jim sure has a good person to lean on. I have all of you, my friends in the forums, to lean on . This makes a huge difference in my life. You all keep a smile on my face.
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 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | Jim and Claudia -- You are both in my thoughts and prayers -- it seems as if this disease is a never ending roller coaster of events, waiting periods, decisions, relief, disappointment, fear . . .
I have been very fortunate thus far, and I still get emotionally exhausted from time to time. You two put me to shame with your toughness. All the best . . . 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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Thanks Jeff, but I know you and you are tough. Just like the buckeyes on the tree in my daughters front yard.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | And Karen,, thank you for the vote of confidence.
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: Aug 2008 Posts: 238 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2008 Posts: 238 | Claudia - I will definitely say one for your hubby too. So devastating, but hang in there!!! Nancy T
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11. | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2008 Posts: 238 | Jim, I put a note on General. Glad you have the appts. lined up and hope the waiting time for them goes by quickly. Git 'r done!!! Nancy
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11. | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Praying for you and your husband Claudia. I'm so sorry that you and he are going through this terrible time. I wish there were words to say that could soothe you and make you feel better.
This community is her for you as a shoulder to lean on during this very very trying time.
K
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | NancyT, life is like a bnox of choco-lates,, squeeze them before you bite. LOL might have a nut in it. That would hurt the gums.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 |
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: 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 | You bnox !! of chocolates reminded me of Forest Gump. Jim am thinking of you and keeping up with your posts daily. Hugs to you and also Claudia, Patty and all the others hurting at the moment. Love Gabriele
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: Aug 2008 Posts: 113 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2008 Posts: 113 | I thank you all for your kind words. God Bless each and every one of you. - Claudia
Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
| | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | Jim and Claudia.....You are joined in this thread, both with good reason to ask for prayers...and you can be certain of heaven being assaulted in your names.....and Claudia's Jim too. You're right: What an evil, dastardly disease this is! XOXO
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2008 Posts: 238 | Hey there, Jim. You're too funny!!! I guess life is like that, huh? But remember... there's a lot of GOOD in chocolate... maybe not the nuts, but the chocolate :o) Hope the Easter Bunny leaves out those dreaded nuts! Take care - Nancy T
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11. | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | One thing I noticed about dark chocolate doesn't stick in y our throat as bad as the lite milky kind. LOL I have both and don't mind using my fingers to loosen things up.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Jim and Claidia...sorry I'm just seeing this now. I've been working late and go straight to bed when I get home. Jim, I will be checking to see how you are doing. I'm happy that your doctors plans involve you sleeping...who wants to awake for all of that:)
Claudia, Lets hope it's from the Cyberknife treatment and nothing more than that. I will say a prayer for you and your husband and I will be looking for your post to see what they say.
xoxo Suzanne
Last edited by suzanne98; 04-09-2009 05:38 PM. Reason: Forgot a word as always
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Claudia and Jim, I am out of town and briefly checking in and found this thread. I certainly join the others in prayer that things turn around for both of you. Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
| | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | You guys are on top of my prayer list.....Friday is almost here, and nobody on this forum is forgetting about either one of you! We know that you'll post as soon as you can. Jim, I guess that means on Saturday in your case. I've never, EVER known anybody to bounce back like you do!! You are a champ! Claudia, as a CG, I know that you wish you could take some of your Jim's problems away from him, but you are doing a good job of what you can do, so hang in there.
XOXO--Colleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | Joined: Mar 2009 Posts: 54 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2009 Posts: 54 | I'm so sorry that both Jim's and Claudia have to go through more. You've already been through so much. May God watch over all of you.
Sweetpea ******** 2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33 | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Thank you sweetpea. I am sure god is watching over all of us Just maybe some of us are his tools being used so that others might not have to go thru this. Just a thought. Have a good day all.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Man what a pre op that was. I was checked over much more than I was for any surgery yet. I have to say , they were very thorugh with everything and their questions. The anesthesiast looked at the list of surgeries I have had and said, if this is all surgeries you have had, you paid for this part of the Hospital. LOL They were all very nice . Gotta be there at 8:45 Friday.
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: Aug 2008 Posts: 238 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2008 Posts: 238 | Hey there, Jim. I'm glad they were so thorough - they should be. Nice is a good thing, too. Glad you're getting an early start on Friday so you won't have to wait all day. I will be thinking about you and praying for you that all will go well. P.S. - be sure to get all that chocolate out before they go in there :o)
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11. | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | YOu have me smiling big time here Nancy. Just to be sure I get the chocolate all out, I'll fashion a mouth scraper out of some dark chocolate and scrap as I go in the doors of the Hospital. They are no nicer than you but I guess they will work for now. {^^}
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Jim...you know I will thinking about you. I know you will be just fine. You are so strong. That was really nice of you to purchase a wing for the hospital. I guess they should name it after you, huh? Can't wait to hear how it all goes!!!
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | You are one of the toughest people on the boards ever, and have an attitude that most of us should aspire to. We are all going to be with you as you go through another battle. I hope your rebound from this is prompt and easy.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | 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 | We are all there with you tomorrow. Im sending you lots of prayers. After everything you have gone thru, this shoudl be a piece of cake. Please post when you are able. 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: 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 | Thinking about you and your biopsies on the 17th. (It�s already Friday 17th mid morning here). Let us know as soon as you can how things went. {{{{{{{{{{{{{{{{{{{ big hug and love from }}}}}}}}}}}}}}}}}}}}}}}}}}}}}} Gabriele Gabi Gabby etc
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Geez, you all have given me so much of a boost in courage that I might just help them and not sleep. LOL THanks everyone individually and collectively. I LUV ya all.
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: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Angel HUGS
((((((((((((JIM))))))))))))
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Big hugs from cornland also Jim
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Jim,
Another one from Pennsylvania who will be praying for you! Keep the fighting spirit and the sense of humor - it certainly helps to have both when dealing with this dreadful disease.
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2008 Posts: 130 | Jim, Prays and positive thinking coming your way. Amy
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side. ND March 2, 2009 reoccurance dx'd Aug 19, 2009
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Almost forgot to wear my Team Survivor Tee Shirt like I always do. Got it on this clean body now. Have a good day all.
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: 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 |
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Sending good vibes your way Jim. Hope it all goes well.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I am home and just fine. When I came to they had me in heated blankets because of a temp drop. My neighbor took me down and my daughter brought me home. The pastor got to me just as I was going to th OR so my angels were on duty. LOL I find out the results in a week and either its cancer orsurgery pains. We play it y ear until then/ He gave me 2 scripts whaich I will pick up in a few miutes. I hope everyone as had a great day and are having tis beautiful day too.
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 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Thanks for the update EZ we've been thinking of you! Get some good rest. KATE
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | 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 | Jim Thank you for posting. I was concerned, just got home from work and checked this right away for an update. Glad you are home safely. Rest and enjoy the nice weather. 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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | So happy to hear you are home and doing well. We are all waiting with you during this week for the results. I hope the weather in OH is as gorgeous as it is here today. The sun naturally makes us feel good!!!
Thinking of you:)
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | I wish you a speedy recovery and GOOD news!
You are one tough dude, a real inspiration.
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: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I went to my daughters early today, fixed her tractor, t hen the handmower . I mowed 3 acres of grass, cleaned out a garage on property my son bought then we cleaned my daughters shed. I even helped my ex wash her explorer. She looked as pretty today as ever. She's like me and has to be busy 24/7 I fiannly came home after stopping at WalMart for groceries LOL these are groceries?? Bought 3 shirts I liked and came home to rest and eat.
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 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Hey Jim,
Welcome home and I will be waiting for the good news at the end of the week.
BTW, I have some chores around here that I can't get to. Any chance you'll be in my neighborhood this week?
Jerry
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Impressive list of chores there Jim. Like the other posters, I wish you the best. My friends all think I'm tough, but you are raising the bar on the "tough" standard here. Love it. 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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Thanks guys for the compliments LOL.. If I was closer Jerry I would take care of some chores for you. Charm, I have to watch that bar doesn't fall off and hit my weak spot., My Head.. LOL Already lost a good liofe partner fromn this crap, but won't say to what.
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 2008 Posts: 357 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: May 2008 Posts: 357 | Gee - I washed the dishes today! You are one tough & ambitious guy, Jim. I'll be praying for good news for you.
Marlene
[quote=EzJim] I went to my daughters early today, fixed her tractor, t hen the handmower . I mowed 3 acres of grass, cleaned out a garage on property my son bought then we cleaned my daughters shed. I even helped my ex wash her explorer. She looked as pretty today as ever. She's like me and has to be busy 24/7 I fiannly came home after stopping at WalMart for groceries LOL these are groceries?? Bought 3 shirts I liked and came home to rest and eat.[/quote]
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I was a sickly baby and wasn't supposed to walk or even make it very far. I guess I am still proving the Drs wrong.. I have lived thru more things that would have killed most people, and here I am still doing those types of things. I am going to make 100 yrs of age or die trying . LOL My body has so many scars that I look like a railroad map. Starting at my head and proceeding south, there is a scar or 2 anywhere you look. THe one on my right shoulder is actually where it's been operated on 3 times.
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: Jul 2007 Posts: 211 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | Jim,
I can't think of how many times I have wished you were my uncle, neighbor, cousin so that you could help me tackle some of my chores and at the same time make me laugh! Your "name" should be BzJim on this board!
Sophie
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+ induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | Joined: Jan 2009 Posts: 62 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2009 Posts: 62 | Jim, You are my hero! Bless you, Carol
DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Jim...you are awesome!!! You are a busy man:) You've done more than me this week that's for sure!!!
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
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