| 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 news Charm. I'm happy for you.
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 2010 Posts: 126 "OCF Canuck" Senior Member (100+ posts) | "OCF Canuck" Senior Member (100+ posts) Joined: Mar 2010 Posts: 126 | There's no excuse for the ignorance, of course, but I think that cancer is so scary and unpredictable to many of us, that it might give someone a (false) sense of control if they think that you or someone else might have "caused" their cancer because of lifestyle issues. That means that if *they* don't do those things, they'll never get cancer! It's deluded and misguided, but understandable when you look at it this way. Patient explanations might help, but maybe not if the person's underlying emotion is fear. After Gordon's cancer and treatment, I worry more about him and myself, and actually catch myself thinking "now, if I don't do this or just do that, I won't get cancer". Luckily I know how wrongheaded this is, and would never say it to anyone else. Anne
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
| | | | Joined: Mar 2010 Posts: 126 "OCF Canuck" Senior Member (100+ posts) | "OCF Canuck" Senior Member (100+ posts) Joined: Mar 2010 Posts: 126 | Charm, that's wonderful! Hope you have a great holiday season with such good news. Anne
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
| | | | 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 | Charm, Definately belongs on the "Don't you love it threat" or even "Friends" as you have so many including me here  Great that there is no evidence of cancer and hope it continues to remain that way. Cheers 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: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Fantastic news Charm. We are heading towards our 3 month check up for Steve on the 9th. The dread, fear, stress etc etc has started already. I so hate the week before appointments and the day of the appointment. Here's hoping our news is as good as yours. Angelia hoping for great news for yours as well.
Wendy
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | 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 | Okay, having hijacked a thread I started, I'll expand on Donna's comment. Don't you just hate how your mind conjures up a worst case scenario before those PETscans or MRIs or ENT checkups? and it appears to me that it's even worse for caregivers than patients. The stress that Wendy is feeling over Steve's test, that Suez is feeling over Ron's is even more poignant since they are caregivers. I know my wife actually worries more than I do about the cancer hitting me for a third time. Yet as all the ones who congratulated me realize oh so well, what a great relief and good feeling it is when those worries don't warp into reality. I guess all the posts here on this thread are variations of don't you just hate it that we or a loved one got oral cancer. 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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | My appt. It went okay, but he is scheduling another PET scan and took a full blood work up. I have a considerable amount of lower back pain. He did mention that it is possible for this stuff to spread to the bone, but very rare. Well, we all know I am in the category of very rare things happening.  Will let you al know when I have some mroe answers.
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 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2010 Posts: 179 | Angeli,
did he say what it might be if it has not spread to the bone? My thoughts are with you during this time. Its so frustrating when we have no idea what is wrong. I hope you get some answers soon so you can start treating it and have some relief from the discomforts you are experiencing. Keep us posted.
Minh
35 Yrs old 03/10 SCC T1-T2 Partial Glossectemy end March - margins not clear enough. While waiting for resection - cancer returned,2 new cancerous lumps Re-section End May & flap from cheek attatched. Margins clear. Mid June - 4 teeth out Mid July -32 Rads and 3 Cisplatin 6th Sept 10 Finished Treatment!!
| | | | Joined: Feb 2009 Posts: 88 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2009 Posts: 88 | OK I am finally going to post something here. It's been a long time. Don't you just hate it when your COBRA insurance runs out and the only insurance left available to you for purchase is a HIPPA policy and it actually costs more per month then the disability check you are receiving because you can no longer work. God forbid what do we have to do to survive while fighting this ugly disease and all the pieces of the new "Normal".
CG to daughter Brandy age 31 initial dx 10/06 SCC T4N0M0 with bone invasion upper maxillary Surgery 10/06 CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx Tumor board - No surgery to invasive for QOL 35 IMRT 3/30/09 Completed 5/15/09 8 tx Erbitux 3/24/09 Completed 5/6/09
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | The Drs tell you that you are in a "weird group of people." I know they are joking around, but I am now starting to get tired of hearing it. Today I was told I was perplexing. I just grin an bear it. Guess I should let them know that I do not like them saying that. I was joking aorund with them about it, but now I just wish I would be like all their other cases so they would know what to do.
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
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