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Joined: Sep 2014
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Joined: Sep 2014
Posts: 27
HI Larry, I am sorry to hear of your diagnosis. I am a caregiver. My BFF is 71 and we went through nonsense for a few mos. His primary care said he just had some type of cold, then it was heartburn... just ridiculous. I got on the phone, and pushed and pushed and got into an ENT quickly. I was terrified as you can imagine. Ended up with 3.5cm BOT tumor and 1 lymph node. I found this forum and learned so much. I quickly became educated, knew what to ask the docs and just kept pushing until I found the best docs I could find. It is worth the effort to educate yourself and ask many many questions. We just finished week 5 of daily radiation and weekly Chemo, Cisplatin. He is doing great considering what he is going through. He is very healthy and nutrition is very important part of his recovery. I am all over this. I trust our team of docs, it is important to trust your docs. Stay positive, educate yourself, when I finally calmed down and educated myself, I felt like we could beat this cancer. It was not so scarey anymore.

My heart goes out to you, It was only early September when we found out, but the fight goes on and I am confident we will win. 14 days of rads to go and 2 more chemo treatments. I think we will win!



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

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Larry, I had BOT primary, 2.5 cm, and two nodes involved. My treatment was chemo and radiation, no surgery. We saved the surgery to do later but the tumor and nodes showed no cancer after treatment so the surgery never happened.

Wishing you the best.


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: Mar 2014
Posts: 286
"OCF Down Under"
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Joined: Mar 2014
Posts: 286
Larry I was told the same thing about surgery. What they said was "its not the best way to treat this" what I heard was "its inoperable, too big and complicated to cut out, you'll have to take your chances with radiation and chemo."

Rads and chemo are very effective with this kind of cancer. They like to keep an option in reserve, and while its not ideal to have surgery after rads, it is an option.

Rads and chemo are a tough road, but doable. It sounds like you are now in good hands medically. Take a notebook and/or a second set of ears and ask lots of questions. Your body will hit you with all sorts of surprises in the next few months. Every cancer journey is different, but you'll find many good people here who have been over the same bumps in the road.


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.
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Hi Larry,

I am having problems with spitting up blood. I've been spitting up blood on and off for the past 4-5 months. I spit up blood streaks and clots, then it comes and goes maybe once every two weeks? I am not so sure. May I ask you if your bleeding was continuous? Could you describe it? I have an appt with a primary tomorrow to get a referral to another ENT. I just recently had another bout of spitting up blood and this is starting to get unnerving.


40 y.o., undiagnosed, spitting up blood past 4-5 months at random intervals, several enlarged lymph nodes under chin and neck, biopsy of one showed benign viral lymphadenopathy. Still being monitored by ENT.
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Hi Larry, welcome to the family. You have had a lot of very good advice already. I would just like to add that chemo and rads are the standard treatments for BOT SCC. It is a tough regimen but doable. I would suggest that you line up some help for the time while you are in treatment. It is a battle best fought with someone who can oversee your nutritional intake and help manage your medical appointments and meds. Good luck.


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: Nov 2014
Posts: 73
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Posts: 73
I had my PET scan and Mesh Mask made. My ENT Surgeon called and told me scan showed I have a tumor on the tongue. It shows that it sits in the middle of the tongue and then goes on both sides. The thickest right is in the middle. The hard mass I feel on the left side is definitely tumor and it�s necrotic, it�s dead tumor, in the middle. Its been there for a while. A pretty good size lump on the left side that�s kind of deep. The right side has two different lymph nodes that light up.
There�s nothing else anywhere else in the body.
I go Friday to have feeding tube put in. Then see Radiation and chemo Dr's next week.


T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
Joined: Apr 2014
Posts: 236
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Posts: 236
Larry6905

I would like to throw some good luck your way as you start your treatments. Be strong You Can Do It.

Best wishes
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


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Posts: 73
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Posts: 73
Has anyone else coughed up a black piece of tissue? It smells foul. In fact is smells like what I have been tasting and smelling the last few weeks.

Should I have been told about staging? I asked about the virus and was told it was not tested. The tumor didn't look like that kind to the doctor.

I am now taking prednisone 20mg tablet could that cause stomach acid? if I will have difficulty swallowing will breathing also be difficult?


T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Larry6905,

I'm sorry for the anxiety you are feeling. Unfortunately, that's part of the deal with what you are going through.

It's really hard to tell what's going on, because we don't have your medical history to refer to. Steroids can cause digestive issues and there could be interactions with other meds if you are taking any. It could just be the stress you are under.

If I may suggest, make sure all prescriptions are from the same pharmacy and use the pharmacist as a resource. I was fortunate because my father has been a pharmacist all my life. There are some websites that allow you to enter all meds and it highlights any issues. Make sure your doctors know all medicines,mover the counter products and herbal/natural products as well.

As far as the junk you are hacking up, it could be anything. Even partially digested blood could be black and smell.

Try hard to not let the mind wander into all the "what ifs". There's going to be a lot going on for a while.

Hang in there, we are all here to walk with you through this. Best wishes for some smooth sailing.


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: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
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Joined: Jan 2013
Posts: 1,291
Likes: 1
Hi Larry,

I had BOT which was necrotic. For months before diagnosis, my family would complain about my bad breath. I tried EVERYTHING and nothing worked. It turned out to be the necrotic cancer.

There were a few occasions where weird small chucks of crap got hacked up as well. Not black but odd. I suspect it was pieces of necrotic tissue but never confirmed.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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