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Hello everyone #198855
08-11-2019 02:49 PM
08-11-2019 02:49 PM
Joined: Aug 2019
Posts: 31
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Barry Toronto Offline OP
Contributing Member (25+ posts)
Barry Toronto  Offline OP
Contributing Member (25+ posts)
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Joined: Aug 2019
Posts: 31
I am a 61 yr old male living in Toronto, Canada.

I received a preliminary diagnosis of squamous cell carcinoma near the back of my tongue just last week. I had a CT scan this afternoon (no results yet), biopsy next Thursday and mri in 10 days. Everything is happening very quickly and is, obviously, a bit scary - first experience with cancer of any kind.

Current symptoms of sore throat, tight swollen jaw, ear pain, swollen tingly tongue have been getting progressively worse over the past three weeks. Eating is hard (to chew or swallow) and weight is dropping.

I have been taking Advil and Tylenol and ent surgeon prescribed hydromorphone for increasing pain levels. Not much relief so far, pain gets a little worse each day. I came across this forum while searching for information and it seems like a great resource. I feel like my condition is milder than many described in here but chronic pain in your mouth area can be very difficult to live with. I am hoping for a “good” diagnosis after all the testing is complete but the waiting and the physical discomfort is taking its toll.

Does anyone have any suggestions on managing pain in the early stages?

Thank you.


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Re: Hello everyone [Re: Barry Toronto] #198860
08-12-2019 06:09 AM
08-12-2019 06:09 AM
Joined: Oct 2012
Posts: 1,157
Toronto, Canada
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gmcraft Offline
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gmcraft  Offline
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Joined: Oct 2012
Posts: 1,157
Toronto, Canada
Hi Barry,

I’m from Toronto too. My husband was diagnosed at Mount Sinai Hospital and treated at a princess Margaret Hospital. Which hospital are you at?

After the biopsy, you will get a treatment plan. If you’re at Princess Margaret Hospital, they have all kinds of info for patients. I cannot speak more highly about the treatment and care my husband received.


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.
Re: Hello everyone [Re: gmcraft] #198863
08-12-2019 02:43 PM
08-12-2019 02:43 PM
Joined: Aug 2019
Posts: 31
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Barry Toronto Offline OP
Contributing Member (25+ posts)
Barry Toronto  Offline OP
Contributing Member (25+ posts)
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Joined: Aug 2019
Posts: 31
Hi thanks. I will be having the biopsy at North York General. Treatment will be at Sunnybrook. Hoping to get some direction while seeing the ent surgeon on Thursday. How long is the time between diagnosis and the commencement of treatment? When does the pain start to subside?


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Re: Hello everyone [Re: Barry Toronto] #198865
08-13-2019 04:11 AM
08-13-2019 04:11 AM
Joined: Oct 2012
Posts: 1,157
Toronto, Canada
G
gmcraft Offline
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gmcraft  Offline
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Patient Advocate (1000+ posts)
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Joined: Oct 2012
Posts: 1,157
Toronto, Canada
When my husband was diagnosed, the doctor said that the Province’s mandated “wait time” for the start of treatment was six weeks. That was in 2015. I don’t expect that to have changed drastically. It was suggested to us to go to Sunnybrook treatment since we lived in Markham. We decided on PMH because my daughter lives on Queen Street which made it a much shorter drive to the seven-week, five days a week radiation treatments.

If you have further questions after you’ve seen your ENT, please feel free to post. I got a lot of valuable suggestions while my husband was going through treatment. It was like the forum members were holding my hand throughout.


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.
Re: Hello everyone [Re: gmcraft] #198868
08-15-2019 03:52 PM
08-15-2019 03:52 PM
Joined: Aug 2019
Posts: 31
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Barry Toronto Offline OP
Contributing Member (25+ posts)
Barry Toronto  Offline OP
Contributing Member (25+ posts)
B

Joined: Aug 2019
Posts: 31
Thank you for taking the time to respond. Went in for a biopsy and scoping procedure today. The ent surgeon had also had an opportunity to see the results of the ct scan. The results from the biopsy will be in next week, but he is fairly certain from the ct scan and today’s scan that I have a tumour at the base of the tongue. I have been given appointments with two oncologists at the cancer center at Sunnybrook next Tuesday. Also prescribed a new medication (gabapentin) which the surgeon thought would provide pain relief caused by the tumour compressing nerves in my jaw, teeth and throat. Here’s hoping.

A couple of questions:

1. The appointments with the cancer centre were a pleasant surprise as I am anxious to commence treatment. On the other hand, is it a further indication to abandon hope that this is not cancer?
2. Does anyone have any experience with gabapentin in helping with pain in oral cancer? I’m also taking hydromorphone and Tylenol/Advil but that has met with limited success.
3 if you have any additional insight or comments, please send them in.

Thank you,

Barry


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Re: Hello everyone [Re: Barry Toronto] #198876
08-17-2019 06:44 AM
08-17-2019 06:44 AM
Joined: Oct 2012
Posts: 1,157
Toronto, Canada
G
gmcraft Offline
Assistant Admin
gmcraft  Offline
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,157
Toronto, Canada
The biopsy will give a definitive diagnosis. I guess most ENT’s who have experience with oral cancer will be able to make an educated guess from looking at the CT. My husband had the CT as well as the biopsy. You may want to find out if the tumor is at the base of tongue (oropharyngeal) or is it in the oral tongue. If it is in the oropharynx, if it is HPV positive which has a better prognosis.

My husband was prescribed gabapentin after his radiation treatment for nerve pain. It didn’t help him much, though. He had hydromorphone when he was hospitalized for aspiration pneumonia and being “morphine naive” he ended up with hallucinations. All this is not to say it will happen to you. Different people react differently to medication. I do know that one can’t stop taking gabapentin abruptly. There needs to be a step-down process. Your doctor should have given you that. If not, ask him about it.

It’s good to know that you will be seeing two oncologists, I would guess the radiation oncologist and the medical oncologist. That’s really quick. We had to wait for two months between seeing the family ENT who had no clue and the head of ENT at Mount Sinai Hospital. It then took maybe a couple of weeks for John to get his biopsy and follow-up doctors’ appointments. After he had a proper diagnosis, it took us another six weeks to start treatment. The worst that can happen in your case now is that it is not cancer and you have wasted time going to the appointment. I’m sure you would not mind wasting that time.

If indeed you have oral cancer and will be in treatment, I would strongly suggest that you make a point of eating all your favorite foods now. Once treatment begins, it will be some time before you will be able to do that, what with mouth sores and taste changes. Don’t worry about weight gain, most people lose weight during treatment.

I am an advocate for patients advocating for themselves. When you go for your appointments, write down all your questions and make sure you ask them. If the doctors say something you don’t understand, ask them to explain. Don’t just let it go. When John saw his radiation oncologist for the first time, the doctor did a scope and said, “I can’t see the margins.” I had no idea why he was saying it. It took me two years and much reading on this forum to learn that clear margins are important. I should have asked, but I didn’t. My experience tells me that the more I know and ask, the more the doctors are willing to explain. I don’t blame them. For one, they had no idea what people know and not know, and then they see so many patients and they are repeating information all the time. If you do go into treatment, get the after hours phone number that you can call for information or help. I found that useful at the beginning when I didn’t know what to expect or on the weekend if I couldn’t get my husband to a doctor. There are nurses who man the phone and they will call you back if you leave your number.

Please ask whatever questions you may have, there’s a wealth of information among the members on this forum.


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.
Re: Hello everyone [Re: gmcraft] #198883
08-17-2019 11:13 PM
08-17-2019 11:13 PM
Joined: Aug 2019
Posts: 31
B
Barry Toronto Offline OP
Contributing Member (25+ posts)
Barry Toronto  Offline OP
Contributing Member (25+ posts)
B

Joined: Aug 2019
Posts: 31
Wow, that’s really helpful, thank you. And some excellent advice, I will take it to heart. I’m supposed to get the results of the biopsy on Tuesday so expect that will be the final stage of diagnosis.

I’m having difficulty maintaining weight now, so I am worried it will get worse during treatment. With throat, tongue and jaw pain, eating is uncomfortable. I have probably lost 15 pounds in the last two weeks and have been ‘eating’ mostly smoothies and soup.i guess this is a bad sign?


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Re: Hello everyone [Re: Barry Toronto] #198885
08-18-2019 06:01 AM
08-18-2019 06:01 AM
Joined: Oct 2012
Posts: 1,157
Toronto, Canada
G
gmcraft Offline
Assistant Admin
gmcraft  Offline
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,157
Toronto, Canada
The stronger you are, the easier it will be for you to get through treatment. To be stronger, you need to be consuming enough calories AND ensure you’re hydrated.

I focused a lot on intake, counting calories for John’s every meal and his fluid intake (do have a look at ChristineB’s posts on intake). If you’re on a mostly soft or liquid diet, you may want to consider eating poached eggs, adding ice cream to your smoothies, blending avocados into your soups, and, in general, increasing the protein content in your smoothies and soups. I used to add skim milk powder to the milk that I used for making the smoothies ( it’s not my invention, I saw it in one of the pamphlets given to me by the hospital), that alone adds a bunch of calories to the milk itself. I also made the smoothies/soups more tasty for John by adding coffee/chocolate/a variety of fruit to the smoothies. It changed from time to time because of his taste changes. The hospital will get you an appointment with a dietitian. Do go for the appointment. They can give you a lot of advice and you can check with them from time to time to see if you’re consuming enough calories. I worked hard on the intake so there usually wasn’t very much our dietitian would say and John used to think it was a waste of his time, but that really wasn’t true. I heard, again and again, dietitians pleading with patients to eat and drink and a doctor telling a patient, “if you won’t eat/drink, I can’t help you.” I think John only about 10 or 15 lbs by the end of treatment (he was a big guy) and the doctors were impressed. They didn’t know that I was the drill sergeant when it came to intake smile

Soon after the first week of radiation, John passed out in the doctor’s office when he went in for his weekly consultation. The doctor told me he was dehydrated. It was news to me. I had no idea he was dehydrated. The doctor said when he passed out, he was sweating a lot, that’s when the body would lose a lot of fluid. He taught me to check the color of his urine to determine if he was dehydrated. It’s as simple as that. They sent him to get hydrated and six hours later, he was as good as new.

I may be getting ahead of the game at this point, but all this knowledge was accumulated through trial and error. I would hate to see another patient making the errors we did.


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.
Re: Hello everyone [Re: gmcraft] #198886
08-18-2019 07:11 AM
08-18-2019 07:11 AM
Joined: Aug 2019
Posts: 31
B
Barry Toronto Offline OP
Contributing Member (25+ posts)
Barry Toronto  Offline OP
Contributing Member (25+ posts)
B

Joined: Aug 2019
Posts: 31
Thanks (yet again) for your thoughtful and thorough response. Hydration hasn’t been much of a problem for me so far, drinking a lot of water and tea with smoothies, soup, etc.

As I think about it more, it is probably better for me to overcome the discomfort of eating now and build back some body weight rather than trying to do it when the discomfort is going to be that much worse.

I have been avoiding those “empty calories” like ice cream to try to focus on foods a little more dense in nutrients (nut milks, juices, seeds, fruits and vegetables). I think you (and the doctors) are saying to build up some fat reserve to live off in the coming weeks and months?


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Re: Hello everyone [Re: Barry Toronto] #198889
08-18-2019 12:14 PM
08-18-2019 12:14 PM
Joined: Oct 2012
Posts: 1,157
Toronto, Canada
G
gmcraft Offline
Assistant Admin
gmcraft  Offline
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,157
Toronto, Canada
If I gave John ice cream, it was always part of a smoothie made with Ensure. It was to improve the taste and bring up the calories. You’re right about not consuming empty calories, but there was little else he could eat at that point. Some people on the forum, I have read, use protein powder in their smoothies. ChristineB has a recipe that is packed with calories, I think she used peanut butter. She also has a List of Easy to Swallow Foods. You can try searching for it on the forum. Really, whatever works and feels right for you, as long as you eat and not lose weight.

Last edited by gmcraft; 08-18-2019 12:16 PM.

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.
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