| | Joined: Sep 2014 Posts: 8 Member | OP  Member
Joined: Sep 2014 Posts: 8 | Well, I got 3 front teeth and 1 rear pulled yesterday prior to radiation treatments !!! Radiation should be starting next week !! I guess its down hill from here for a while !! I am trying to keep a positive attitude and know it has to go down hill for a while before I begin my up-hill journey !!! I wish everyone out there going through this journey the very best !!! Greg
06 / 14 Started to feel a lump in the back of my throat
08/28/14 ENT discovered tumor
09/03/14 CT scan
09/11/14 removal of tumor
09/13/14 biopsy == cancer ?? stage 1
09/17/14 masked formed / waiting
09/25/14 Diagnosis = Nasopharyngeal Carcinoma stage 2
10/02/14 picc line to be inserted
09/31/14 meant with OS = 4 teeth to be removed B-4 radiation treatments
10/7/14 3 front teeth pulled and 1 back
10/10/14 flipper made,( I still have teeth ) sorta !!
10/20/14 started chemo and radiation 6 weeks of both
| | | | | 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 | Good luck, Greg! We got your back.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Greg - I won't lie - it's horrible. Plan for the worst, expect it and rejoice when it's not that bad. 10 weeks from now you will begin to climb out of that deep deep hole very slowly - but you will do it.
Hugs...
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Mar 2014 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Mar 2014 Posts: 31 | Best wishes, Greg. It will help if you have folks to support you. I have my wife, who made sure I made it to rads every day and chemo/hydration a couple of times a week. We're here for you too, buddy. Keep thinking that others made it through and you will too.
2/2014 SCC T4aN2bM0 HPV+ Tonsil/BOT
3/3/2014 PEG and port
3/10/2014 Chemoradiation therapy begins 260 mg Cisplatin x3, 2.12 Gy rads x33
4/23/2014 Final Cisplatin infusion
4/25/2014 Final radiation treatment
7/17/2014 PET scan. Lymph nodes clear. Primary tumor reduced both size and SUV (borderline hypermetabolic) so it's inconclusive.
8/2/2014 PEG tube removed.
11/24/2014 Saw MO, RO, ENT, and Head & Neck Surg. over past 10 days - all agree no recurrence but enhanced surveillance will continue.
| | | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2014 Posts: 236 | Hang in there Greg YOU CAN DO IT ! Days will pass quickly . I brought my mother everyday and on the last week she went twice a day. before we knew it she was half way through. Now I wont pretend it was a walk in the park by no means and it was pretty rough at the end but my mom finished and YOU CAN TO .
Good Luck
Heidi
Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015
| | | | | Joined: Aug 2014 Posts: 61 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2014 Posts: 61 | Good luck Greg. Its a rough ride, but you will kick ass. I am 9 weeks out of treatment, and i am surprised how the time went by so fast. Remember when you put that mask on, its time to kick ass... prayers to all
Tongue Cancer
1/2 tongue removed, replaced by flap from forearm. April 15, 2014
neck disection, 1 lympnode involved, doctors removed all to make sure cancer is gone.
30 rad treatments and 2 cisplatin chemo, doctor said I did not need the third
one. Finished up July 30,2014
Chemo treatment was my choice. The board felt surgery and radiation was plenty to take care of my cancer.
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | hello Greg - many, many of us have gone through this ahead of you. None of us liked it, some of us hated it, but we all got through it. You will too. For the days when it's really bad, just come here and write about it. Support and a sympathetic ear we have in abundance.
hang in there, you'll do fine
Tony
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: Sep 2014 Posts: 27 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2014 Posts: 27 | Hi Greg, we will go through this together. I am a caregiver, we just started Rad and Chemo this week. So far so good but we are totally prepared for the journey, I keep telling him by Thanksgiving treatments will be done and we will be on downhill run. I know it is not going to be a picnic, but we have to do what we have to do. This forum and group helps me a lot and I am sure it will help you too. I was terrified when we were diagnosed, cried for days. Thanks to educating myself and reading and communicating with these folks, I feel like we are ready to just get this done.
I will be thinking about you everyday too.
Hang in there
Hugs
Caregiver
BOT 3 cm 08/24/14
Pet Scan 09/24/14 localized
Rad started 10/07/14
Cisplatin started 10/09/14
PEG 10/28/2014
Last Rad 11/26/14
Last Chemo 11/21/14
| | | | | Joined: May 2013 Posts: 185 Likes: 3 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 185 Likes: 3 | Greg stay connected and use the forum for advice and encouragement. Here to assist from experience.
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: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Mar 2014 Posts: 286 |
Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Greg, you're part of the family now and we rally around our own. You sound like a very upbeat guy and I know you'll get through it. As others have said, it's not the easiest, but you're going to do it.
Courage!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Mar 2014 Posts: 110 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2014 Posts: 110 | Greg, This is the beginning of a tough time, I won't lie, but you will make it -- trust these people. My ENT and RO told me I am probably the slowest healer they have ever seen but even I have managed to get largely back to normal  -- if I can, you can. Remember through this that now things are being done -- take a lot of strength from that. You're not waiting, you're not worrying, you're doing and you have a team of people doing them. Good luck, stay strong and let us know how you're doing. Listen to the advice you'll see here and embrace the journey -- you'll be through this in no time! Cheers, The Hellion
SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!
**update** passed away 3/26/16 RIP, you will be missed by many
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