| | Joined: Jul 2014 Posts: 29 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jul 2014 Posts: 29 | Hi folks.
Hope it is ok to post this here...same disease, just metastisized now. learned it went to lungs. Went to see oncologist today-we were so not expecting what we were told. It feels surreal. We were told that the prognosis is grim-with chemo he might make it a year. They said 6-9 months and that chemo might give him a few more months. They are trying to get him into a clinical trial. I guess I was delusional, or maybe naive, but this is not the news we thought we were getting today. Neither of us can seem to wrap our brains around this. Please, someone, could you tell me something good-guide me to some uplifting and hopeful survivor stories-there have to be some, right? I certainly hope so, we need to find as much hope as possible. I am just completely and totally gobsmacked at the moment.
Husband tongue cancer 7/01/14 (forward/right half of tongue)
43 years old at diagnosis
Partial glossectomy/node removal 7/31/14
PEG tube placed
2 mos high dose radiation
2 treatments cisplatin, 3rd was cxld due to hearing issues
cancer in both lungs, stage 4, 05/18/15
chemo port to be placed on 05/21/15
Full scan on 05/21/15
Chemo, 3-4 types (names etc coming soon) for 7 mos
4th type depends on clinical trial and if placebo or not
He is planning to defy all odds and kick this cancer!
| | | | | 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 | I'm stunned and heartbroken for you and your husband. I'm so sorry.
We have one member showing some really good results. He will chime in, I'm sure. What part of Texas are you in?
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: Jul 2014 Posts: 29 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jul 2014 Posts: 29 | We are in the boonies in the Ft Hood area, but treatment is 3 hrs south in San Antonio.
Husband tongue cancer 7/01/14 (forward/right half of tongue)
43 years old at diagnosis
Partial glossectomy/node removal 7/31/14
PEG tube placed
2 mos high dose radiation
2 treatments cisplatin, 3rd was cxld due to hearing issues
cancer in both lungs, stage 4, 05/18/15
chemo port to be placed on 05/21/15
Full scan on 05/21/15
Chemo, 3-4 types (names etc coming soon) for 7 mos
4th type depends on clinical trial and if placebo or not
He is planning to defy all odds and kick this cancer!
| | | | | 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 | If there's anything we can do from DFW, let me know.
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: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | There are a few here that are fighting the same battle gmcraft is one of them. She can likely give you some insight into what is working for her husband. I am so sorry to hear this. I would suggest tweaking his diet and adding some supplements and protein shakes if he isn't already doing it. I'm not some crazy holistic healer believer but I do believe in doing what you can to make yourself as healthy as possible to fight this. OF course anything you take should be cleared with your drs before hand. Also any clinical trials will have a lot of guidelines that may limit anything else he can take. But eating and drinking healthfully can't hurt. 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: Jul 2014 Posts: 29 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jul 2014 Posts: 29 | Thanks y'all. I so appreciate the info, kindness, support. Much needed. I am still in shock, but I have faith we'll be ok. Meanwhile, does anyone know how I can find support groups for kids? We have two 12 year olds. MD Anderson has some great ones, but that's Houston. I found a great week long summer camp put on by UT Austin that we are trying to send them to-for kids with a loved one with cancer. But I am having trouble finding local support groups for kids. Thought I would see if anyone may have suggestions on that as we are a bit rural-but am willing to drive a ways, like to Austin or Waco if y'all may know of anything I haven't found yet! Thanks so much for everything!
Husband tongue cancer 7/01/14 (forward/right half of tongue)
43 years old at diagnosis
Partial glossectomy/node removal 7/31/14
PEG tube placed
2 mos high dose radiation
2 treatments cisplatin, 3rd was cxld due to hearing issues
cancer in both lungs, stage 4, 05/18/15
chemo port to be placed on 05/21/15
Full scan on 05/21/15
Chemo, 3-4 types (names etc coming soon) for 7 mos
4th type depends on clinical trial and if placebo or not
He is planning to defy all odds and kick this cancer!
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | The cancer metastasized to one of my husband's lungs six months after treatment. It was, like you said, a surreal experience. The RO said there was nothing he could offer us but that we should talk to the MO who is in charge of drug development at the hospital. That was how my husband got into his first trial. If that is the route you may go, I would suggest you find out a bit more about the different phases of drug trials and let your MO know that that is what you would like to do. That way, they will look out for trials which are recruiting patients. The up side of being in a drug trial is that the patient is very closely monitored and so you get to see the doctors a lot more. The down side is the uncertainty -- there is very little statistics about new drugs so even the doctors cannot tell you a lot about what you could expect to see happen.
We have over the last two years learned to take it a day at a time. We don't worry about the results of CT scans until the moment we are actually getting them from the doctor. We feel that we are in a holding pattern for now. We know things can't go on like this forever, but one never knows.
Keeping you, your husband and your boys in my thoughts. If you have further questions, please feel free to ask.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Aug 2015 Posts: 5 Member | | Member
Joined: Aug 2015 Posts: 5 |
christine Scott
| | | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Sorry about the news, hope you find a good outcome and keep up the good fight!!!! Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Mar 2014 Posts: 79 "OCF across the pond" Supporting Member (50+ posts) | | "OCF across the pond" Supporting Member (50+ posts)
Joined: Mar 2014 Posts: 79 | So sorry to hear your news love to all and thinking about you .
Dii x
Di 47 none smoker / drinker
T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
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