| Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I know it has been awhile since I have visited this place. Not a day goes by that I do not think about all of you. Life is crazy at the moment with school starting and my new position of department chair. I love my job, but extremely overwhelmed. Anyway, on a good note I decided to start getting in to shape and began getting up 30 minutes earlier and started walking. I wish had started this years earlier. I go back to my ENT on Friday for a check-up. We will see what he says when I tell him that I have had ear pain off and on for about 2 weeks and pain in my jaw area. None of this pain is constant so I haven't been to worried about it until now. The pain in the ear has become more frequent and a little more painful. My tongue has also started to feel different in the alst few days. That could be continued healing or something else who know. Anyway, other than that all is well. Friday couldn't get here soon enough.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Mar 2009 Posts: 32 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Mar 2009 Posts: 32 | I am 3 months post treatment and off and on have had strange sensations on the side of my tongue where my primary was located. Have not had the other problems you spoke about though. Very best of luck when you check it out. I am (was) a big macho ex-cop, ex-special agent, kind of guy but every time I get a tingle or twitch, I panic and think the worst. I truly hope that all is well with you and you continue to progress in your recovery.
John Retired US Government (DoD) Age: 61 SCC/BOT discovered neck mass 11/08 Removed neck mass 09/01/09 Final Diagnosis after scoping on 02/08/09 Chemotherapy and Radiation: Paclitaxel and Carboplatin, 8 weeks of chemo (1X weekly) and daily radiation both sides of neck). First treatment 03/02/09
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I know that I am hoping that I just have an ear infection. Guess I will find out tomorrow. Thanks for the encouragement. I only has surery and now kinds wonder if I should have had Chemo and radiation. Anyway, we will find out this week. I am going to try and not stress about it. By the way I have a little boy that wants to be a police officer when he grows up.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | 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 | I have those pains too and usually right before a doctor's appointment! While sometimes these things are serious indicators, often they are just our minds messing with us. I find the pains usually disappear the second the doctor says there is nothing there!
Hope you hear your doctor say those words tomorrow. Stay positive.
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) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I jhave the problems too and in the morning I am scheduled to have a part on my tongue at the tip removed for biopsies and tubes put in my ears.
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: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | Jim, you should start another thread so that we can respond to you.....
Angelia, I hopehopehope that your sensations are nothing but changes due to healing. You just had a PET scan, so that's some comfort. Please keep us posted! XO
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Well, I know it is not an ear infection. I do know that I had to break down and take some tylenol yesterday. That intermittent pain is horrible when your up in front of the class teaching. I hope i am wigging out here for nothing. I feel like such a horrible person because there are so many others with worse thigns going on and I seem to only focus on myself right now. UGH! Anyway, I go to the ENT tomorrow and will see what he says.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | 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 | Yes, there are people here and in this world who have things worse than we do, but that does not invalidate what is happening to YOU and you should NOT feel guilty for expressing your fears and uncertainties - that is what we are here for. Just because the person next to me has two broken legs, donesn't mean my one broken leg doesn't hurt!
Looking forward to hearing about your doctor appointment. In the meantime - taking painkillers is not a bad thing. Bravo to you for being a teacher. I'd have swallowed the whole bottle of something by now if I had to teach!
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Okay, now i am really going nuts. I have a pian at the back of my tongue. I tis not there all the time, but if a piece of food or anything gets backs there on this one spot it hurts like the dickens. My ear feels really heavy like and is not getting any better. To make matters worse our car broke down today, so now comes the fun part of triyng to figure out how i am going tog et to this appointment without letting anyone know that there might be a problem. UGH anyway, just needed to let off some steam.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | First of all you ARE NOT a horrible person. You are wonderful and you have every right to feel nervous. We have all been there before and are here to support you and be your sounding board. Please let us know tomorrow what the ENT says..I will be thinking about you. Hang in there.
About your car..that can be a real bugger. I got a flat tire on Tuesday and ended up spending $900 on 4 new tires and a rim...hopefully that doesn't happen!! Cars are money pits aren't they?
How is everything going at work? Is everyone being nice?
xo
Last edited by suzanne98; 09-10-2009 04:41 PM. Reason: surprise...surprise...spelling error
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:)
| | |
Forums23 Topics18,265 Posts197,179 Members13,362 | Most Online1,788 Jan 23rd, 2025 | | | |