Previous Thread
Next Thread
Print Thread
Page 2 of 22 1 2 3 4 21 22
Joined: Jul 2012
Posts: 3,267
PaulB Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
You're welcome Don. I think that was the first Proton Treatment Center? Funny, I always skipped reading about Proton Treatment, figuring I would never have it, few locations in the U.S., not even MSKCC, and NJ just opened in 2012, but now I'm going to have it, not this its an award or something I'm getting lol. There seems to be several types too, Gantry, incline fixed beam, fixed beam Proton treatment, which I'm not all familiar with, and as David mentioned IMPT too, which is supposed to to the latest precise delivery. I'll find out soon enough, and maybe I'll finally meet the elusive Wizard smile


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






Joined: Jul 2012
Posts: 3,267
PaulB Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
I had my consultation at ProCure today in NJ, and then onto Manhattan to see the oncologist. I met an angel on-line in the head and neck cancer website(s) who drove me, so thank you for that, and really do appreciate it.

ProCure is huge, but quiet compared to manhattan hospitals, and looks like a club, which I don't wan't to join for too long. Anyway, the radiation oncologist, who is from my hospital, wants to do 5 weeks Proton Treatment, so I was surprised it was longer, but not really knowing it takes 50Gy gentlly to kill HNSCC. CT simulation took an hour, and must have been scanned, re-aligned a dozen times or so. A mask was made, my 4th, and is a little further down the shoulder than my others, which I never kept, and will use the rubber band type straps in my hands, around feet, to pull my shoulders down. The Dr. wants to start as soon as possible, maybe two weeks, depending on the chemo. We went over the usual radiation effects, but one thing with Proton therapy is the entry burn, my word, is worse than IMRT, but there is no exit burn out the back, and more radiation is concentrated in the tumor, less elsewhere. Asked about carotid blow out, and he lowered my risk to a little over 5%, being my carotid was removed, which is still high, but sounds better than 20%.

Onto the medical oncologist who has been treating me since last year. He wants to do carboplatin being it's less toxic than Cisplatin, and I never had it yet, unlike Erbitux, Taxotere, last year, and Cisplatin, Taxotete, and 5-FU before that, and knows my concerns for an adverse reaction, and kidneys, so it's a once a week hour infusion with low dose carboplatin, probably with ant-nausea meds. Went over the possible, less common side effects, which to me, is more likely. One is the effects on blood counts, which Hemaglobin is always below normal, but not that bad lately after two transfusions in May.

Seeing my local oncologist, who treats my anemia, and is like my primary care doctr, and other doctors as well to get their blessings since they would be treating me if hospitalized locally. Already saw my Opthomologist last week, and all is fine or as good as it's gonna get.



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






Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
All planning going well then Paul.
Great news about your driver. There are indeed some special people around.
So, I guess treatment will be over the Christmas period and into the New Year.
You can do this.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jul 2012
Posts: 3,267
PaulB Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Thanks Tammy. There are 3 type of Proton treatment delivery machines there, using the same principle or protons, and one is the big round machine called a Gantry, then smaller fixed beam, and an incline fixed beam. My RO thinks he may use the Gantry.


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






Joined: Jul 2011
Posts: 945
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
It sounds like they are being very careful about the positioning with the hand and foot strapping - all to the good, and I know you will be careful about managing the 'entry burn'. I am glad that it sounds like you will be able to get started before the year-end holidays.
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Joined: Jul 2012
Posts: 3,267
PaulB Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Thank you Maria. Yes, seems they were being very careful, and Proton treatment is very precise, more so than IMRT, maybe even Cyber knife, I'll find out. I sort of suggested, "Maybe we'll start after the new year?" Doctor says, asap, probably in a week or two. Now I have to figure how I'm getting there daily, which will be just as hard as the treatments.


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






Joined: Dec 2010
Posts: 5,260
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Good luck with it all, my dear... and kick it in the butt.


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: Jul 2012
Posts: 3,267
PaulB Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Thanks. I'll probably kick the butts of all these so called social workers first who do crap, other than not help patients, and some don't know their jobs or give correct information either, showing they are not on top of their game, from all my experiences recently, and in several hospitals, nursing homes in the past, who btw, can be evil as far as long term adult care settings. Everyone just refers you to someone else, including many of these cancer organizations getting millions of dollars.

Funny that no one tells you about anything until you ask specifically about it. Now I'm getting a grant application for reimbursement from $50-$4,000 max because I asked, doesn't mean I'm getting it. I also asked about staying at hope lodge in NYC take NJ transit to treatment. Was told you have to have daily treatment in NYC, not chemo once a week there. I called hope lodge NYC, and they said I can stay there even if going to NJ, btw, there are no Hope Lodges, and I'm a little too big for Ronald McDonald's House.


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






Joined: Dec 2003
Posts: 2,606
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 1
It all sounds great Paul! Of all the things related to radiation, all the machines, the bling, the facilities, etc., it never seemed right to have me hold on to a rope around my feet to pull my shoulders down. Not very scientific. My shoulders were very square back then and both ac joints were burned up. I had one taken out in 2004 and they insisted no sign of ORN, just osteoarthritis. Funny it was red, bloody and brown later on the skin above them both.



SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Jul 2012
Posts: 3,267
PaulB Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
This is the second jump rope radiation treatment I'm getting, but I've been tied up many times before that lol. Actually the hospital I was in once, for several months, tied my hands on the bed railing after being bad. I couldn't move my legs anyway, so they didn't bother with them. I don't know how you do it, but keep it up. I'm only 2.5 years out from my first radiation.


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






Page 2 of 22 1 2 3 4 21 22

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,829
Newest Members
jens, cAVEgIRL, IowaBlueJ, Nancy Jablonski, nlawson
12,902 Registered Users
Forum Statistics
Forums23
Topics18,048
Posts196,297
Members12,902
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2021 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5