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Re: Hello everyone [Re: Drew Skinner] #199200
10-06-2019 06:12 AM
10-06-2019 06:12 AM
Joined: Aug 2019
Posts: 37
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Barry Toronto Offline OP
Contributing Member (25+ posts)
Barry Toronto  Offline OP
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Joined: Aug 2019
Posts: 37
Hey Drew, great to hear from a “local”. You sound like you are making great progress, congrats. I feel fortunate reading your story that I didn’t require surgery - it is a bit of a mystery to me the type of tumours that demand surgery and those that do not. Is your tumour HPV based? I read that HPV 16+ tumours (mine) are very sensitive to radiation - maybe that is the difference? Anyway, I have heard that the surgical team at Sunnybrook is top notch - my ent told me that if his family required surgery he would send them to Sunnybrook.

I just completed my 22nd radiation treatment on Friday - 11 to go. I have had 2 largedose cisplatin treatments with one left. My side effects so far have been (mercifully) mild. “Sunburn “ around neck, very sore throat, dry mouth, difficulty swallowing. I find the act of eating solid food to be a bit off putting. Food doesn’t taste very pleasant in my mouth and when I swallow solids, I feel a mild nausea. Combine that with zero appetite and it’s hard to get motivated to eat much. I have taken to isosource through the peg to maintain weight which is a struggle (lost 20 pounds since starting). I am swallowing as much solid food as I can to keep the muscles in my throat working.

Apart from the effects on my mouth, I am still getting around in a fairly normal fashion. I played golf this week and have been riding my bike to treatment most days. My goal is to ride to my 33rd treatment - rain or shine!

Good luck with your recovery, hope that it is swift.


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: gmcraft] #199201
10-06-2019 06:19 AM
10-06-2019 06:19 AM
Joined: Aug 2019
Posts: 37
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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: 37
Hey gmcraft. I have hatched a plan to deal with socializing with friends over food. See if you (or anyone) thinks it is bonkers.

I have invited two (close and understanding) couples for dinner this week. My plan is for me to do all of the cooking and serving while they socialize around the kitchen - kind of a “chefs table” setup . This way, I can cook, see my friends over dinner but hopefully diffuse the awkwardness of not being able to eat or drink. Just thinking of a bunch of small tapas type plates over the evening. I’m looking forward to it since I haven’t been able to cook or socialize much recently and this kills two birds.


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] #199202
10-06-2019 06:37 AM
10-06-2019 06:37 AM
Joined: Aug 2018
Posts: 275
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ConnieT Offline
Gold Member (200+ posts)
ConnieT  Offline
Gold Member (200+ posts)
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Joined: Aug 2018
Posts: 275
how nice to be treated that way!!!

I used to fast a lot for health reasons (I tend to be a health nut) and I would not eat when I went to dinner with friends...after awhile, no one ever thought a thing about it, they just ate and we all talked like normal. Just a thought that most people get caught up in their own plate and socializing in the long run.

Best wishes.... you will prevail!


Spouse of 57 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: Hello everyone [Re: ConnieT] #199204
10-06-2019 07:53 AM
10-06-2019 07:53 AM
Joined: Oct 2012
Posts: 1,162
Toronto, Canada
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gmcraft Offline
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gmcraft  Offline
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Joined: Oct 2012
Posts: 1,162
Toronto, Canada
Barry, what a wonderful idea! Your friends are so lucky. It’s not at all bonkers and it speaks to the kindness you show others.

If you have been golfing and are still riding the bike, you are doing very well.. I will pray for the cold weather to stay away until you have fin9shed your last radiation treatment so you can reach your goal.


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: Barry Toronto] #199219
10-08-2019 04:34 PM
10-08-2019 04:34 PM
Joined: Jul 2019
Posts: 12
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Drew Skinner Offline
Member
Drew Skinner  Offline
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Joined: Jul 2019
Posts: 12
Hi Barry;

Nope, my tumor is/was not HPV based - squamous cell carncinoma - floor of mouth cancer that had spread to the mandible. My dentist sent me to Sunnybrook as if there was no other place I should/could be sent. In the early days I did a little research for ENT cancer treatment in Toronto, and you really only come back with Mt. Sinai and Sunnybrook. Now, that said, you can get radiation/chemo at a lot more hospitals and, I know my Surgeon is a professor at UofT and has credentials with UHN hospitals - he does surgeries elsewhere. So, from the outside looking in, who knows how this is all fit together.

I'm glad I had the surgery as all the 'visible' cancer is gone and the margin biopsies all showed me clear. Finally, biopsies of various cancer pieces showed none to be metastatic. Now, I was discharged from Sunnybrook on Sept. 10 and am just feeling better now. Having the radiation/chemo still in front of me is a little demoralizing as I know I feel better, but, alas, it's not to last. This is a journey that I'm getting used to - albeit slowly.

I lost 10 pounds through the surgery and am not sure what I will -or may- lost due to the radiation/chemo. I don't have a peg tube or a g-tube. the doctors gave me a tube down mouth - throat while I was in hospital. Really was useful while I had the trach. After the trach was gone I coughed it up. I have a secondary condition (unrelated) that messes up my blood vessels and I can get some nasty nose bleeds, so no tubes down my nose either. They might have to give me that tube if I start to lose too much; for now am eating - am aware also that this treatment affects everyone differently.

I wish I could bike to Sunnybrook. Alas I'm downtown (Bloor/Ossington area) and am not biking to Bayview/Lawrence. And, with 3" of bone missing in my left leg I won't be golfing this year !! - but I do have a jawbone...

Wishing you the best in your recovery,

Cheers,

Drew.

Re: Hello everyone [Re: Drew Skinner] #199299
10-22-2019 07:02 AM
10-22-2019 07:02 AM
Joined: Aug 2019
Posts: 37
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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: 37
Brief update after finishing my last radiation treatment today and final chemo (large dose cisplatin) Friday.

I decided against riding my bike to last treatment today due to inclement weather in Toronto- raining and cool, so typical of November. I was able to ride yesterday which I consider a victory of sorts.

Frankly, I feel like the treatments have beaten me up a bit. A little more tired and lethargic and the treatments have left me on a mostly peg diet. Losing weight probably hasn’t helped me maintain energy.

Doctors have advised that side effects will continue to worsen for a few weeks, and then hope for some healing.

I now find myself in the stage where treatments are complete but there won’t be any feedback on whether the treatments have been successful in eliminating cancer for some time yet. Ten weeks until imaging can begin due to effects of radiation.

I also feel that I should push myself to reintroduce solid foods but hard to get motivated absent appetite.

A continued thank you to everyone on this forum for the advice and encouragement. Hope I can return the favour to anyone who unfortunately follows down this path.


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] #199300
10-22-2019 08:41 AM
10-22-2019 08:41 AM
Joined: Jun 2019
Posts: 132
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Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Senior Member (100+ posts)
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Joined: Jun 2019
Posts: 132

I'm so glad you've fininshed treatments. I'm behind you by a couple of weeks and I think I'm on the same path with regards to lethargy and feeling beaten up.

This is the time to allow your recovery, so don't push yourself too much. I was told it'll be around the 2nd week post treatment when you'll start to feel an improvement in yourself.

With introduction of solid food, maybe start with smoothies and gradually thicken them up before moving to solids. It's certainly not a race but good to keep ypur swallow strong.

Your cycling and zest to keep going is grand and an inspiration, one that keeps me motivated.

Thank you so much for the updated. Big hugs to you.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses RT Start 17th Sept '19
2x cispltin
Re: Hello everyone [Re: Dizz_zzey] #199301
10-22-2019 10:04 AM
10-22-2019 10:04 AM
Joined: Aug 2018
Posts: 275
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ConnieT Offline
Gold Member (200+ posts)
ConnieT  Offline
Gold Member (200+ posts)
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Joined: Aug 2018
Posts: 275
wow! you were riding your bike to treatments? I'm impressed. my husband couldn't hardly figure out how to get out of the car I drove him in, barely able to walk, unable to focus on anything even simple. I suppose if he had kept up his nutrition, he might have done a little better.

The next few weeks won't be a piece of cake but you can see the light at the end of the tunnel now!


Spouse of 57 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: Hello everyone [Re: ConnieT] #199302
10-22-2019 12:58 PM
10-22-2019 12:58 PM
Joined: Oct 2012
Posts: 1,162
Toronto, Canada
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gmcraft Offline
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gmcraft  Offline
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Patient Advocate (1000+ posts)
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Joined: Oct 2012
Posts: 1,162
Toronto, Canada
Barry, well done! Not riding your bike on the last day of treatment because of inclement weather? You’re amazing. My husband was in a wheelchair at that point.

I agree with Dizzy that now is the time for you to rest a bit. If you want to keep up your swallowing but has no appetite, do the dry swallows. There’s no point in doing imaging for now. The radiated tissues are so swollen that the doctors can’t see anything. Don’t forget your flu shot now that it’s available. I am going to get mine tomorrow.


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: Drew Skinner] #199304
10-22-2019 02:02 PM
10-22-2019 02:02 PM
Joined: Sep 2019
Posts: 21
Rochester Y
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ArdenDD Offline
Member
ArdenDD  Offline
Member
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Joined: Sep 2019
Posts: 21
Rochester Y
Congrats on your last treatment, Barry! Now’s the time to rest and let your body begin to heal. My husband’s fatigue is slowly lifting a bit, pain meds reduced and he’s putting some weight back on. We learned through this supportive group that this all takes time and to not fret about how long it takes, for it will turn around when it’s the right time.

Sending good vibes your way!
Nedra


Spouse of patient 7 weeks post radiation as of 9/30/19
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