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Blair1 #182819 06-25-2014 07:19 AM
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I completed 25 Proton Therapy treatments, 50Gy, in January. Compared to IMRT, it was easier, entry point may he higher than IMRT, and beams stay in the tumor, so there is no exit wounds like loss if hair in the nape of the neck, but it takes takes longer to set up, position. For the two locations in the cervical neck it took 30-45 minutes vs 17 zaps with IMRT in 17 minutes, but you don't hear anything with PT like IMRT, and the proton beams itself takes a minute. I went to ProCure in NJ that has 4 machines, 2 flat beam, incline beam, and the large Gantry, but only one machine can be use the proton beams at a time from the cycletron. I believe MDAnderson has IMPT, Intenisty Modulated Proton Therapy, aka Pencil Beam, which is even more direct than other PT, with no need to change positions, brass snubs. Mine had to be changed twice, as well as the table position, although it's robotic.

I made a post with Proton Therapy in the currently treatment section that has some information, links.

I hope this helps.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Blair1 #182833 06-25-2014 10:55 PM
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Given that the various PT machines are designed to be more precise, have you heard of it being used to treat small distant mets? It seems like the cases where mets to lung and such showing up as small (< .5cm) nodules could be blasted away with pinpoint PT beams.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Blair1 #182839 06-26-2014 05:34 AM
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Mine was for a local regional recurrence on the carotid artery, actually the two stubs left that had microscopic cancer, but I haven't heard about the lungs, but I never looked into that. They sometimes do radio-static radio-surgery in the lungs, Cyberknife, so possibly.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Blair1 #182960 06-30-2014 05:26 AM
Joined: Sep 2006
Posts: 8,311
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IMPT was designed to treat hard to reach tumors like brain where surgery is not a viable option but Paul is our site's expert on this topic.


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.
Blair1 #182973 06-30-2014 06:14 AM
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Thanks David, but hardly an expert lol. I did look briefly into it, and Protons may be able to be used in lung cancer. I guess they will find more areas as time goes on. I think MDAnderson is the only facility with IMPT, right now, which is the programming capability like dose painting in IMRT.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Blair1 #183369 07-14-2014 11:53 AM
Joined: May 2014
Posts: 8
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I ended up doing radiation as it is local and only have to do mainly right side. Into my second week with no effects yet. Tongue is now almost back to normal size and have no problem eating or swallowing. Am told I may lose my taste for away but have been told I didn't have any taste to begin with as I drank Bud Light!

As I heal fast and have a high pain level they say I should not have any problems with this. I was two weeks ahead of recovery after surgery. Have to admit this was a little tougher than my open heart 13 years ago but still not real bad.

Blair1 #183383 07-15-2014 04:54 AM
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You're doing fine Blair, still keeping up that sassy, upbeat attitude. It will help you nicely face the upcoming onslaught of rads treatment.

I'm 7 months post rads myself and things are all getting better, albeit slowly. There are plenty of threads in Currently in Treatment to tell you what you will experience and how good or how bad it can be. So there's no reason to fear or worry about the unknown ahead of you over the next 6 or so weeks.

If you haven't started daily use of Aquaphor (or equivalent) on your skin, get that started. It really does help prevent the skin burns on your neck. And I hope you have a prescription for oral lidocaine or one of the other magic mouthwash formulas, these will help you with the mouth/throat related discomfort many of us face, particularly while eating.

Other than that, stay active, pursue your hobbies and interests if possible, including the physical interests such as dancing, walking, running, etc.

The last thing you want to do is to stay home, inactive, thinking that your treatment or disease necessitates it. That just gives you way too much time to start worrying about stuff, and worrying is pretty much the last thing you need to be doing.

You are and will continue to do fine, it won't always be easy, but it is entirely doable.

keep us informed of what you're doing and going through, you matter to all of us.

take care,
Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Blair1 #183384 07-15-2014 05:06 AM
Joined: Jun 2007
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Glad to hear you are handling rads so well. Some lucky few sail right thru it without many of the side effects. Those are the ones who pushed with their intake to get 48-64 oz of water and 2500+ calories in every single day. Thats what will make it easier.

Your sense of taste will probably begin to change in week 3 or 4. Even if things taste bad you still must take in 2500+ calories daily. A few weeks after rads is over your taste will slowly begin to return.

Love your sense of humor! Hang onto that as things change during your treatments. Watch out for crowds during treatment and recovery. You may not feel it yet but your immune system is struggling right now and you are much more susceptible to getting sick than you were pre-cancer.

I resent you a message with an important link. Please take some time to review it and add a signature. It really is important! It will help us to help you when you ask questions.

Thanks!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Blair1 #183465 07-18-2014 05:46 AM
Joined: Sep 2006
Posts: 8,311
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Like the Bud Light comment which I have to agree with BTW. lol


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.
Blair1 #183942 08-02-2014 05:01 PM
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Now into my 5th week of radiation. Hasn't been bad so far. Lost taste last week which su--- but I will survive. My radiologist has a new mouth wash that takes all pain way if you use it 6 times aday. Great stuff. Can still eat and swallow fine and haven't lost any weight. With only a week and a half to go I think I will make it fine. Still playing golf but have lost some energy. Everything is clear so hopefully we got this early enough.

I do believe though you have to be in the right state of mind to go through this without a lot of problems.

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