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1st IMPT #197910
02-28-2019 08:48 AM
02-28-2019 08:48 AM
Joined: Jan 2019
Posts: 5
G
Genau Offline OP
Member
Genau  Offline OP
Member
G

Joined: Jan 2019
Posts: 5

Week 1 Proton Therapy, unilateral for tonsil and Lymph node. HPV

Had my first session yesterday. Uneventful of course. I could see how others might have a tough time but it was a walk in the park for me.
I walked 5 miles and worked out in the gym before treatment so was feeling well. Today will split my exercise to make sure I get in a couple of miles of running after treatment every time.

Started fluoride treatment this morning along with mouth wash and gargle. Gargling several times a day is going to be a nuisance. But will comply.
SLP appt this morning and they said since it is unilateral they do not expect swallowing problems and but went through the information for me. Said no swallowing exercises needed. Hope that is the case. I had already been doing them. Along with neck and mouth exercises.

Nothing to see here..yet. just change in routine to incorporate all the stuff.


Tonsil and lymph node, early detection. SCC HPV, Treatment: Started 02272019 Proton Unilateral Therapy. 30 sessions
Also Chronic Lymphocytic Leukemia Survivor. Treatment Calquence...No symptoms or side effects.
Re: 1st IMPT [Re: Genau] #197911
02-28-2019 02:42 PM
02-28-2019 02:42 PM
Joined: Oct 2012
Posts: 1,079
Toronto, Canada
G
gmcraft Offline

Assistant Admin
gmcraft  Offline

Assistant Admin
Patient Advocate (1000+ posts)
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Joined: Oct 2012
Posts: 1,079
Toronto, Canada
It’s great to see you have such a positive attitude. The gargling is a pain but when the mouth sores and gunk become too much, you can consider using a Waterpik on the lowest setting. Use the tongue scraper and put a spoonful of magic mouthwash into the warm water. It works really well at that point when you feel you just don’t want to bother with gargling anymore.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: 1st IMPT [Re: Genau] #198097
04-09-2019 09:24 PM
04-09-2019 09:24 PM
Joined: Mar 2019
Posts: 27
Baltimore, Md
J
Judy210 Offline
Contributing Member (25+ posts)
Judy210  Offline
Contributing Member (25+ posts)
J

Joined: Mar 2019
Posts: 27
Baltimore, Md
I’m frustrated with myself for not checking on possibilities of proton therapy for my husband. He has base of tongue with Mets to lymph node, HPV +. I did ask but our radiologist oncologist said he would not qualify because it was base of tongue and no where for protons to bounce off of. They do not offer it at Hopkins until this September but university of Maryland does (both in Baltimore). Now I see others with tonsil and BOT getting it. Feel like I may have been lied to because they don’t offer it yet


Wife and cheerleader. Right sided BOT dx 2/25, surgery 3/7 for tumor removal (clean margins) 2 lymph nodes 1 pos for ECE (ugh), pT2N1M0 HPV POSITIVE (one small blessing in this nightmare), Stage changed to Stage 1 due to diffuse and large HPV status. tx plan 33 radiation, 5 cisplatin chemo to begin 4/12.
Re: 1st IMPT [Re: Judy210] #198101
04-10-2019 06:34 AM
04-10-2019 06:34 AM
Joined: Jul 2012
Posts: 3,178
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,178
NYC
Judy,

I had protons on 2014 for head and neck metasteses. At that time, besides other cancers, in regards to ours it was only given for certain cancers like brain, skull base and metatasric head and neck cancer with prior radiation. MD Anderson was doing studies with head and neck cancer outside this group, some as initial radiation treatment. I believe it has changed since then.

It was very time consuming, and only had several spots to hit. Took anywhere from 20 to 45 minutes to get the set-up right. The radiation took a few minutes, if that! Some initial head and neck cancers need a broader area like my first IMRT hit 17 spots bilaterally. Although protons could do that, I could only imagine how long that would take for set up.

There is a newer type of Protons, called IMPT, that does the set up like IORT and can hit multiple spots, but there may be only 7 locations in the U.S. that has that, and again, it may not be for all.

Good luck with your search, and you’re doing right by asking, and seeing about your options.


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






Re: 1st IMPT [Re: PaulB] #198110
04-11-2019 08:27 PM
04-11-2019 08:27 PM
Joined: Mar 2019
Posts: 27
Baltimore, Md
J
Judy210 Offline
Contributing Member (25+ posts)
Judy210  Offline
Contributing Member (25+ posts)
J

Joined: Mar 2019
Posts: 27
Baltimore, Md
Thanks for the reply. We are in Baltimore, Md. University of Maryland Medical Center is one of 11 who already has this therapy. Hopkins opening their center in September. I was going to refer to UMMC but after she told us he wasn’t a candidate I backed off. Everything else I doubted them of, has turned out to be true so I’ll believe it because he’s 4 days into radiation now so don’t want to look back. But moving forward, will check if needed.


Wife and cheerleader. Right sided BOT dx 2/25, surgery 3/7 for tumor removal (clean margins) 2 lymph nodes 1 pos for ECE (ugh), pT2N1M0 HPV POSITIVE (one small blessing in this nightmare), Stage changed to Stage 1 due to diffuse and large HPV status. tx plan 33 radiation, 5 cisplatin chemo to begin 4/12.
Re: 1st IMPT [Re: Judy210] #198115
04-12-2019 12:12 PM
04-12-2019 12:12 PM
Joined: Jul 2012
Posts: 3,178
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,178
NYC
Good luck moving forward, Judy 210!


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







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