Previous Thread
Next Thread
Print Thread
Page 4 of 4 1 2 3 4
Re: Hello everyone [Re: Drew Skinner] #199200
10-06-2019 07:12 AM
10-06-2019 07:12 AM
Joined: Aug 2019
Posts: 23
B
Barry Toronto Offline OP
Member
Barry Toronto  Offline OP
Member
B

Joined: Aug 2019
Posts: 23
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
Radiation scheduled to begin Sep 5. Chemo (cisplatin) begins Sep 6.
Re: Hello everyone [Re: gmcraft] #199201
10-06-2019 07:19 AM
10-06-2019 07:19 AM
Joined: Aug 2019
Posts: 23
B
Barry Toronto Offline OP
Member
Barry Toronto  Offline OP
Member
B

Joined: Aug 2019
Posts: 23
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
Radiation scheduled to begin Sep 5. Chemo (cisplatin) begins Sep 6.
Re: Hello everyone [Re: Barry Toronto] #199202
10-06-2019 07:37 AM
10-06-2019 07:37 AM
Joined: Aug 2018
Posts: 253
C
ConnieT Offline
Gold Member (200+ posts)
ConnieT  Offline
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 253
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 56 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 08:53 AM
10-06-2019 08:53 AM
Joined: Oct 2012
Posts: 1,134
Toronto, Canada
G
gmcraft Offline
Assistant Admin
gmcraft  Offline
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,134
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 05:34 PM
10-08-2019 05:34 PM
Joined: Jul 2019
Posts: 9
D
Drew Skinner Offline
Member
Drew Skinner  Offline
Member
D

Joined: Jul 2019
Posts: 9
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.

Page 4 of 4 1 2 3 4

Support OCF


Help OCF

Shop Amazon and Help OCF

Top Posters(All Time)
ChristineB 10,384
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,744
Newest Members
japerdue, LMC5183, TheWombat, Andorea, oc12
12194 Registered Users
Forum Statistics
Forums23
Topics17,583
Posts194,225
Members12,194
Most Online306
Aug 21st, 2016
Powered by UBB.threads™ PHP Forum Software 7.7.1