| Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jan 2010 Posts: 142 | I had my first Radiation Treatment today. No one told me that the Mask would continue to shrink as it cured. Between that and the mouth piece I am glad I decided to take a Xanax today. A close Friend had insisted that she take me to the first treatment and I am glad she did. It was nice not to face it alone. My husband would have gone but I am not the type who normally needs company.
Now if I can just figure out all the home care. If you add up all the rinses and the time to wait afterwards it will take some 30 hours a day. Not sure how I will fit it all in, I am going for a meeting with the radiation team tomorrow so maybe they can straighten all this out.
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer 1/18/10 Clr PET 1/27/10 Surgery found Perineural invasion 3/22/10 Began Rad 05/05/10 34 rads 8/19/10 Clr Pet Scan 12/13/10 Clr Ultra sound/biopsy 5/4/11 MRI Clear 8/2/11 All Clear 5/25/12 All Clear 6/3/2016 All Clear
| | | | 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 |
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: Jan 2010 Posts: 142 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jan 2010 Posts: 142 | The salt water and bkg soda, the Caphosol, wait 30+ minutes after using it, they say brush 3x,s day after flossing and at bedtime. Then use the Floride Tray and it says to wait up to 2 hours before drinking any thing after that. Ten glasses of water a day. The outside skin cream for the burning there. The Dentist said she has some mouthwash to help with the ulceration and they are giving me the miracle mouthwash. Something for my lips which are already buring. Seems like a lot to me but like I said maybe I am just confused. Maybe some of this is duplicates and I use one or the other?
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer 1/18/10 Clr PET 1/27/10 Surgery found Perineural invasion 3/22/10 Began Rad 05/05/10 34 rads 8/19/10 Clr Pet Scan 12/13/10 Clr Ultra sound/biopsy 5/4/11 MRI Clear 8/2/11 All Clear 5/25/12 All Clear 6/3/2016 All Clear
| | | | 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 | Calm down now. Take it one day at a time.
Do drink plenty of water each and every day, try for 48 ozs and do consume as many calories each and every day, try for 2500-3000 cals.
Do Fluoride right before you go to sleep and that way you won't have to worry about the 2 hrs which most of us have been told only 30 mins anyway.
Rest of the stuff, consider it as needed and only you will know if it comes to that point. I never did (have to) gargle; I never did burn that much so I only had to apply some cream once or twice and that was way late in the TX. Brush your teeth as you can. I found it painful after a while and basically only did it when I felt like it. I had other things to worry about you know and besides I did the Fluoride every night sans one or 2.
Point is don't get overwhelmed with all these things. You will learn as you go just like the rest of us did and consider yourself lucky that you have found this site during Tx as opposed to some like me that didn't happen upon this site until 3 weeks post Tx. Heck before long you will be an expert and helping others.
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: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | I went out and got a very soft toooth brush. Brushing was hard to do
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jan 2010 Posts: 142 | As usual David CPA you are right on. I had my team meeting today and I went over the list. There were a couple of duplicates. When I said that there are only 24 hours in most days they laughed. I get the feeling they tell you 10 so you will do at least 5-6 and I understand now that some of it is PRN. I am amazed that after two treatments my numb lip is burning and you can already see the area that was radiated, not real red but already obivious. I agree about having found this site before the treatment it is a God Send! Only 28 to Go!!
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer 1/18/10 Clr PET 1/27/10 Surgery found Perineural invasion 3/22/10 Began Rad 05/05/10 34 rads 8/19/10 Clr Pet Scan 12/13/10 Clr Ultra sound/biopsy 5/4/11 MRI Clear 8/2/11 All Clear 5/25/12 All Clear 6/3/2016 All Clear
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | I live in Idaho, close to the Washington boarder. Where I recieved my radiation treatment was in Lewiston and right across the Snake River is Clarkston WA, with only the bridge seperating the two "cities". When I was going to radiation, there was this guy from Clarkston that would have his rads done right after me and he was claustrophobic and generally very nervous and uncomfortable before going into treatment. After a few weeks of treatment, and knowing he was going through chemo at the same time as well, he'd become very relaxed, funny and would often eat snacks before going into radiation. Curious I asked him what changed and how he found an appetite during chemo as by this time I'd lost a lot of weight and had no interest in food. He smiled and laughed and said he was on medical marijuana that he asked his Oncologist in Washington (where it's legal) for a script. From that time forward, I was actually jealous of the guy and I'd never done an illegal drug in my life to that point and had no interest in MJ. But as treatment went on, and seeing him maintain his weight and his mood always in good spirits I began wishing that MJ was legal in Idaho. Funny story, I thought I would share. I don't condone smoking pot though...if you're going to do it, vaporize it so you don't release carcinogens! Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | On brushing the teeth issue, my dentist said to get a kids tooth brush as they are normally softer than an adult's tooth brush. It has worked wonders and still does. I still have pain in my tongue when anything touches so having a smaller tooth brush helps keep it away form the tongue.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
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