| | Joined: May 2012 Posts: 47 "OCF Canuck" Contributing Member (25+ posts) | OP  "OCF Canuck" Contributing Member (25+ posts)
Joined: May 2012 Posts: 47 | Hi Cheryl,
I am out of the hospital now, and the wound from the infection is 90% healed. It will be another couple of weeks before it will be completely healed before they can start radiation. Haven't got a schedule yet but will when I see Dr. Bayley. Still waiting to get that appointment.
I will be back next Thursday to see Dr. Golstein to check on the healing of the infection wound and hopefully everything is fine.
Right now the home care nurse is changing the gauze packing below my chin.
Did you stay at the lodge when you went through the treatments?
Joseph
Joseph 59 male
pain in tongue strt 2/10/12, Dx SCC 3/19/12, confirmed Stg IV 4/5/12,
Total Glsctmy & recon w/ flap from L thigh, neck disct, trach 4/27/12
G-Tube 5/1/12
55 nodes all clear
completed 2 chemo 33 rad
non-smoker, non-drinker, exercise daily, mostly vegetarian diet...go figure
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi there... glad to hear you're doing well! I was there last week to visit dr. Irish... had a panic attack over something small and I guess I needed reassurance that everything was fine. ;o) Which he did quite well!
I live in mississauga and actually was okay enough to drive myself to the hospital daily. I was dropped off the chemo days, and was picked up the next day by my husband. And a friend drove me one time - the rest of the time I did it myself. I was very blessed that I did okay with the treatments - for most it is not an easy thing. This by far wasn't easy but I got through it without a lot of the issues others have. I was blessed in a big way. I hear the lodge is great though and the have a shuttle etc... it really is worth it if you are from out of town and have to travel any distance. Good luck with everything and don't let them keep you waiting too long. I was a bit of a keener when it came to treatments. I had booked my rads appointment three weeks to the day post surgery, and saw my radiation guy and dr. Irish the same day - Dr. Irish said I'm recommending you for radiation and chemo - (he said a lot of other things like, it was insurance though he believed I was cured) and it may be about 6 weeks before they start them. I said no I start in three... I already had my dates, scans, and mask making set up. If you are feeling good push to get it done. I know you need time to heal but once you are at that point it's good to move as quickly as possible. Hopefully chemo won't be too bad... and either will rads. Buy some glaxal base... it's great for your neck skin. (after you're healed of course) take care!
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: May 2012 Posts: 47 "OCF Canuck" Contributing Member (25+ posts) | | OP "OCF Canuck" Contributing Member (25+ posts)
Joined: May 2012 Posts: 47 | Just found out that I won't be seeing the radiation oncologist until radiation starts. Her secretary said rad is scheduled and they will tell me in the mask fitting appointment Monday. I definitely won't be getting chemo.
Joseph 59 male
pain in tongue strt 2/10/12, Dx SCC 3/19/12, confirmed Stg IV 4/5/12,
Total Glsctmy & recon w/ flap from L thigh, neck disct, trach 4/27/12
G-Tube 5/1/12
55 nodes all clear
completed 2 chemo 33 rad
non-smoker, non-drinker, exercise daily, mostly vegetarian diet...go figure
| | | | | Joined: May 2012 Posts: 47 "OCF Canuck" Contributing Member (25+ posts) | | OP "OCF Canuck" Contributing Member (25+ posts)
Joined: May 2012 Posts: 47 | Actually, the mask fitting appointment turned out to be also the radiation planning appointment. I saw the radiation oncologist today and the chemo oncologist also. I found out there was positive margin in a small area which is news to me. All along I understood that the margin was tight but not positive. Since the margin is positive, I would have to take chemo. The chemo doc was telling me it was my decision. It was just very confusing.
In any event, they want to start chemo and rad as soon as my infection wound heals, now tentatively set in about 2 weeks. By then, it will be just over eight weeks after surgery.
the chemo will be 2 or 3 sessions of cisplatin and I will stay overnight for each.
I just want to get better, if chemo is what is needed, then it is OK. Will have to deal with the side effects later!
Joseph 59 male
pain in tongue strt 2/10/12, Dx SCC 3/19/12, confirmed Stg IV 4/5/12,
Total Glsctmy & recon w/ flap from L thigh, neck disct, trach 4/27/12
G-Tube 5/1/12
55 nodes all clear
completed 2 chemo 33 rad
non-smoker, non-drinker, exercise daily, mostly vegetarian diet...go figure
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Good for you. Do the chemo. You have to hit it hard the first time. Give it all they got right from the get go.
Good luck and keep in touch.
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi there! Kathy's right hit it hard from the start...  chemo really isn't that bad! (well... At least it wasn't for me everyone handles it differently but if it helps it's worth it! 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: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | Simon managed chemo just fine. I agree with the girls here - hit it as hard as you can. Good luck, Joseph.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | Joined: Feb 2012 Posts: 151 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2012 Posts: 151 | While we were staying at the Hope Lodge there was an older lady going through radiation and the 3 doses of chemo and she did pretty good. I was amazed she was eating when my husband had already quit eating even 1 bite. She looked pretty good most days and really was a trooper. I often teased my husband that he was getting the baby doses, Cisplatin 6 times weekly while she was able to handle the 3 bigger doses. Looking back now I think he would of had most of the same issues even if he didn't have the chemo and just had gone with the radiation.
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | What chemo did they discuss and how often?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | David I can probably answer this since Joseph's being treated at my hospital... different rads dr., not sure who the MO is, but likely it will be cisplatin... they do the three bag method and often miss the last bag. He has the same SO as I do.
I'm sure he'll be back to pipe in... ;o))))
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
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