| Joined: Jan 2019 Posts: 5 Member | OP Member Joined: Jan 2019 Posts: 5 | Week 1 Proton Therapy, unilateral for tonsil and Lymph node. HPVHad 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.
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | 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. | | | | Joined: Mar 2019 Posts: 28 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Mar 2019 Posts: 28 | 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.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | 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
| | | | Joined: Mar 2019 Posts: 28 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Mar 2019 Posts: 28 | 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.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | 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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