| | Joined: Jan 2009 Posts: 71 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 71 |
57 @ Dx, Stg IV BOT (1.5cm), lymph nodes (lrgst 2.5cm), non-smoker, casual drinker and exercise nut, Cisplatin x 2, Erbetux w/IMRT x 35/70Gy, PEG, Treated in San Antonio @ CTRC 12/16/08-1/27/09.
3/5/09-CT
6/12/09-PET, PEG out
12/1/09-CT
12/6/10-PET
12-8/11-CT
1-4/13-CT
(all clean)
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | HALLELUJAH! Happy Dance Time! I am so-so-so happy for you and Bev! The song will have a great new meaning for me. I've always loved that song and ever so much more, now. Now you both go celebrate BIG TIME!
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: 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 everyone. Oh, and as for Tammy's comment, I should have been clearer, I had nothing to do with convening the tumor board, that was my RO's doing. He's the one with the arsenal. He felt that the edema issue had not been fully explored since until me, nobody else at this CCC had ever had this much radiation over the maximum. So there was no true comparisons for the radiologist to consider. That's why the language was so scary:
[quote]Impression: Persisting abnormal soft tissue in the left parapharyngeal space with extension along the left/middle hyoid bone compatible with known recurrent tumor. These areas were hyper-metabolic on prior Pet study.
Findings: There continues ill-defined soft tissue prominence with loss of myofscial planes in the left parapharyngeal space which was hypermetabolic on PET study, likely presenting a combintion of tumor and post treatment changes. There is persisting abnormal soft tissue, extending along the left/central hyoid bone which demonstrated bony erosion and hyper-metabolic activity on prior PET compatible with neoplasm
[/quote]
After going over the MRI with the tumor board, the radiologist reconsidered and felt that post radiation edema was more likely than a tumor combo. They did schedule another MRI in mid April plus a 6 month post TX PETscan that same week in April.
But I will worry about those in April.
Boy, did I give Dr. Google a workout yesterday looking up all those medical terms and then articles to put them into context.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | You are a GD warrior brotha, holy crap! I'm very happy for you and Bev! Rest up my friend and rejoice, put a little up in the air!! YEEEHAW!!!
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Soooo great Charm. What a long week this has been for you both. We have been waiting for your news too.
Congratulations. Relax with your favorite wine!!!
Hallelujah indeed!!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: May 2012 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2012 Posts: 114 | Fantastic news!!! So happy for you and your family!
Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Hallelujah indeed Charm!!! So happy for you and Bev!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Charm,
I am doing cartwheels and backflips for you. Okay, actually just in my head but the thought was there! Nothing like winding down the week with good news.
Best wishes for continued healing and lots of good news. P
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jun 2011 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2011 Posts: 54 | So so happy to hear this! Cheers to you and many more blessings.
Age 44. Diagnosed at 34 (2006) with T1N0 SCC tongue on right side. Neck dissed & 6 weeks Radiation. 30% tongue removed. Never smoked;
2nd recurrence 1/2013 on left side. Surgery to remove 2/2013 forearm flap/neck dissec T1N0; brachytherapy 4/2013;
3rd recurrence 11/2015 mandibulectomy for jaw bone cancer Stage IV/no lymph node involvement
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Great news!!!!
I'm so glad you got the results you were looking for. It's interesting to see some of the pro's getting things wrong due to the amount of radiation you have received. Once we get out here into the experimental range of radiation exposure it seems we start getting some pretty interesting opinions from our doctors about results and evaluations.
I got the same scare you got with my ulcer when the ENT was sure it was a recurrence. It was not, just a result of excess radiation exposure.
I have learned at this juncture to wait until everybody has chimed in with their opinions before getting too exited one way or another.
We are in uncharted territory here and have to take it at a slower pace when evaluating our progress.
Great to see you found a way to deal with the pain and keep your wine ritual up.
My best to you and Bev as always.
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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