| | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Joseph, here's one more member on your side and pulling hard for our team.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: May 2012 Posts: 47 "OCF Canuck" Contributing Member (25+ posts) | | OP "OCF Canuck" Contributing Member (25+ posts)
Joined: May 2012 Posts: 47 | Hi David2,
Thanks for your support. I can use as much as I can get.
I notice that I am gaining some weight, on average about half a pound a day in the past 3 days. This is great. The stronger my body, the better I can deal with the side effects of chemo and rad!
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 | Hi again,
Yes, eat, eat, eat!!! Gain as much as you can now because you WILL lose. Kevin lost 56 lbs total. He had it to lose luckily and looks great now. If he doesn't eat a lot he loses still.
As far as kidneys, they are fine. He had 2 big doses of Cistplatin along with the other 2 chemo drugs, but somehow handled it. He got quite sick the first round, but the second he did very well. They reduced the 5FU a little on the second round. If you have the potential for kidney issues and you know it, hopefully they will rethink the Cist.
Have a nice weekend and EAT!!!
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: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | | "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2011 Posts: 131 | Hi
I has the cisplatin two cycles of it . I had a bag each day along with anti sickness and saline water. I also had anti sickness tablets which didn't work. It was not great and took a week to get over each cycle. I have tinnitus and ear problems but kidneys are fine I think it was easier to tolerate the way I had it together with the radiotherapy. It is doable and if it works you got to do !
I couldn't taste anything but am getting fit back more and more and I'm now nearly a year out
Take care of you
Jayne
Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator
Age 45
| | | | | 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 |
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 |
Hi Kathy,
I'm doing my best to gain weight and get more fit. I'm still using the Gtube but supplement the meal replacement with real food and the body seems to be much happier with real food. I stated to gain weight as soon as I did it. Unfortunately I have a minor set back. infection has developed on the floor of the mouth where there was a T junction of incisions. It formed a hole going down to the throat. I was immediately readmitted. It was so sudden I didn't even pack anything.
The great news though is that my live X-ray swallowing study passed with flying colors, so I can have liquid food by mouth. But in light of the infection, I Can't take anything by mouth until it all clears up. Bummer!
They toke a CT scan yesterday to confirm the infection extent and the contrast dye caused my face to puff up and my skin to itch. Apparently out will go away once it get flushed our of the system.
Oh well, two steps forward, I step back, but still moving forward
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 | Hi Jayne,
So you had many small doses of Cisplatin? I heard that lessens the side effect compared to a few big doses. Do you know the doses you receive each time and how many did you get in total? It is good to know that you didn't have kidney damage, that's my biggest concern.
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: 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 | Currently we are seeing 2 delivery methods when using Ciplatin. The first I call the Big Bag Method the patient receives their first bag the first day of rad (before rad); the 2nd appx 15 rads or days later and the 3rd on the last day of rad (before rad). Many don't get the 3rd because they are to sick and/or their cancer is responding as hoped for. Some have Carboplatin substitued for the 3rd. This method has been used the longest and is considered the standard. The second method delivers the same quantity of chemo but in 6 smaller weekly doses and most that have had Cisplatin delivered this way have not complained about the typical side effects as those of us that got the Big Bag method. To my knownledge there has never been a study judging the effectiveness of method number 2 vs method number 1 nor has there been a study comparing the effectiveness of Carboplatin vs Cisplatin.
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 | Hi sorry about the infection... You definitely need to boost our immune system, real food will help when you can eat again. With a history of diabetes I know healing can be wrought with complications - hopefully the fistula will heal up quickly. Good luck.. I glad to see they're on the ball with you. Say hi to dr. Irish if you see him for me... Cheryl de luca... 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: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Oh no....sorry about the infection. Hopefully you can get it under control quickly. Yay on the swallowing test!! That is good news and soon you will be back to solid food!
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
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