| Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Oh Lori - I'm so sorry you are feeling this way, but it happens to so many of us - even caregivers! You've already been through so much and looking at your sinature info, you did have a clear PET back in March which sounds like a good thing to me. If you are depressed, that's something that is temporary and there is help for that. When my son was going through treatment, he had meds for depression and was also in therapy for help with depression. If you are still on meds, sometimes the meds can make you have sad thoughts, too. It would be good if you could check with your doctors and tell them what's happening with you. Look on your prescription bottles to see what side effects there are. You know my son used to post on here but only did for a very short time because he said it made him so sad so what I did was copy stuff from this form that I thought would help him and I only gave him the positive news. Maybe you could just read comments that help you feel positive. Helping someone else with the benefits of your experiences can help you feel better, too. But please do check with your doctor. He/she may want to change your meds or give you something to help you feel better. Let us know what's happening with you, ok?
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | 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 | Maybe it would be easier for you to read the main OCF pages . Its more educational and not so personal like the forum is. Its okay to be afraid, we all get scared. Oral cancer is not like a hangnail, its a serious possibly deadly medical condition that leaves far too many patients with life long disabilities and impairments including disfigurement. Who wouldnt be concerned after being diagnosed. We do understand and will do our very best to help you with everything. Its ok to lean on us. We get you! 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 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Welcome! Glad you are doing well now. Sound likes you went through a lot!
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Lori, I'm having trouble understanding something here. You fought your way through your diagnosis and treatment by yourself without this forum in your corner. That shows incredible strength, fortitude, courage and so many other positive traits.
So, with all that behind you and seeing positive results now, I would think you would be the champion of the positive attitude, keep your head up, you can get through this mindset.
It puzzles me that you seem to be leaning in the opposite direction.
I'll be the first to admit that I'm just a guy, and us guys can be awfully thick about some things, but is there anything else going on with you other than you are just being empathetic about what other forum members are going through.
I thought about this when I responded earlier, but couldn't find the right words. Now, reading your later post I have to ask.
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: May 2013 Posts: 187 Likes: 3 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 187 Likes: 3 | Lori there is a grateful attitude that does cause one to pour out emotion when reading what others have endured. For example it was easier for me to weep over a child going through chemotherapy than my own experience with same. I still weep when reading some signatures or reading a current experience. I can do that because I know what I went through and am grateful for survival. Keep reading with tears flowing (a positive) but seek to give back as well. Ten were healed but only 1 returned to thank.
Age 55 HPV 16+ SCC, BOT 050613 Stage IV great team at OSU Tx 6 weeks of rad started June 3 8 weeks of chemo started May 28 RTOG Phase III trial Cetuximab group. Treatment completed 7/16/2013 PET Scan completed 10/08/13 Results discussed 10/11/13 NED - Free but am I Next part of the journey? 1year PET 10/24/14 NED Good reports now 10 years out. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Nothing is wrong with crying, especially going through what you did, and thinking about it after the fact or whatever other reasons.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Hi Lori, the tears come at weird times. I didn't cry when I was diagnosed, or any time leading up to or after my surgery. The first time I cried was when I got home, I was in the shower, and realized I couldn't wash my own hair because I couldn't lift my arms up high enough.
The second time was after the RO gave me choice of whether to have rads or not. I cried when I was telling him I decided not to.
I've cried more writing and reading these posts than any other time, but I have also found it cathartic.
Everyone has different triggers, and sometimes you just need to cry to release the pent up stress.
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | Joined: Aug 2013 Posts: 54 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2013 Posts: 54 | Lori, I agree with Tina. I didn't cry until I was home healing. When I was alone. It was a thankful cry to God for me being spared the rads and chemo after the ordeal of surgery. I still cry when read posts about recurrences and about those facing the more treatment. I'm empathetic by nature too. You go ahead and cry. If there is anything we can help you with.....let us know. You now have a family here who knows what you have been through and what it feels like.
Alicia
48 yo female, quit smoking 4yrs ago, light drinker, Stage 2 SCC, Bx3, Dx 8/22/13, surgery 9/11/13. Partial glossectomy, bilateral neck dissection levels 1-4. Tongue reconstruction with flap from forearm. 87 Lymph nodes CLEAR. Tongue margins good at 1 cm. No further treatment planned. Monthly monitoring planned for upcoming year then periodic monitoring for next 4
| | | | 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 | Lori,
We all react differently to our experience with this crappy cancer and some definitely need and get professional assistance along the way. Please consider this for as far as I can see you should be happy as hell.
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 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Lori, check the menu up top of this page and click on "my stuff". There should be a flashing icon indicating that you have a private message from me.
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
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