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Hockeydad #154749 09-19-2012 08:02 PM
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i have the exact same treatment plan as you. 3 bags and 35 rads.
i finished my tenth today. talked to a little ole lady on a walker that was walking into her 26th rad today. i felt like a pansie compared to the strentgh she showed. this will be tough. listen to you your body and keep as active as you can. keep up as much nutrition as you can, i've already lost over 20 pounds.
do what you can when you can. rest when you wanna rest.
good luck!


Age 35, Former smoker/drinker HPV+
Ear Ache 5/12
GP for ear ache 6/18
ENT for ear ache 7/12
CT shows cancer 7/12
Biopsy 8/12
diagnosed SCC
Base of tongue right side
Barely crossed midline
Nodes involved
PEG 9/12
35 IMRT start Sept 6th
Cisplastin x3 1 down 2 to go
Hockeydad #154858 09-21-2012 02:49 PM
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Had my mask made today. The process was easy, only have to remember 1 thing don't move. It looks a little creepy. I am going to ask for that when we are done. I don't know what I am going to do with it but there were some interesting post in the last few days. I might make him into a goalie and let the kids do the rest.

Next Friday they are going to do a dry run. Monday 10/1 start Chemo and Rad. Docs gave me more pills. Zofran and Companzine (no not really but the generic versions of course) for nausa. Also Decadron for Chemo.

Treating cancer is a game of hurry up and wait. Hockey starts tomorrow, first game against Parma OH.

Last edited by Hockeydad; 09-21-2012 05:32 PM.

Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
Hockeydad #154882 09-22-2012 05:37 AM
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Posts: 8,311
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It's yours to keep at the end. I still have mine. Everytime I give a speech on OC I take it with me for the flash effect. The first time they clamed me down I thought my heart was going to pound it's way thru my chest. The first time my wife saw me clamoed to the table she ran out of the room fearing she would faint. Neither of us were prepared like we try and prepare every newbie on this site but somehow we still made it thru.


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.
Hockeydad #154896 09-22-2012 09:56 AM
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Hello Hockeydad!
I don't often post, but I do read the forums regularly(almost daily). They have provided wonderful information to us. I will "pay back" all I have received by offering you a bit of knowledge from our "summer to forget." We are a few months ahead of you...treatment ended three weeks ago. Top items to note:
- The treatment is not as bad as you might be lead to believe it will be. My husband had very few side effects. No nausea, minimal pain. We were ahead of the meeds....don't be afraid to take them and do so before the symptoms present themselves. Mouth was a bit sore, as was his neck, but not bad and almost completely healed now
- Ask for ativan. It is used as an anti nausea med, but also reduces anxiety, My husband took half a pill an hour before radiation each day. Took the "edge off".....some days he even had 2-3 ml of liquid oxy with it. Made a big difference
-PEG- Our RO told us that he would not need one and he would be able to eat throughout the treatment. We had done enough research that we wanted to be safe and plan ahead. He told us that we were the first to ever ask for a PEG...usually the patient has to be convinced to get one. My husband ate throughout his treatment, with the exception of about 3-4 days near the end and the entire first week post treamtent. The major benefit we found in using the PEG was the supplemental feeding and hydration it provided. The key to getting through the treatment in good shape is proper hydration and nutrition. It is very difficult to be motivated to eat the amount you have to eat to counteract the amount of calories burned off by the radiation. We used the peg mostly as a supplement to get an extra 1000 or so calories a day. Additionally, we would puta few cups of water in it and let it drip through. The recommendation is to consume 10-12 cups of water a day, which is not easy for a healthy "normal" person. He had the PEG inserted the week before treatment, when he was feeling great and was not chemo compromised at all. He will get it removed in two weeks....happy to have it gone, but glad for the help it provided. And he maintained his weight throughout the treatment.
-Magic Mouthwash - very helpful the last few weeks of treatment....until now. winding down on the usage as his mouth is almost completely healed
-Xylimelts- OTC product that you place in your mouth when you go to sleep. It helps create moisture and eleviate dry mouth while sleeping
-if you don't have a recliner, or a really comfy chair/couch...get one. You will be tired and don't want to be in bed all day


My husband was treated at a top 10 CCC University Medical Center. We had a second opinion from a smaller facility and it was very similar. We live in a large city and had options....and chose the University based on the size of the program and the ability for the MO and RO to specialize in HN. From everything I have read on your posts, your case sounds straightforward and I am sure the teams have seen similar cases and are confident and very experienced.


Wife to 58 year otherwise very healthy husband(and the sweetest man in the world). T1N2b SCC. June 2012 TORS Tonsillectomy/mod neck dissection and 10 lymph nodes removed. Path showing 3 bundled nodes, slight ECE. IMRT 30x and Cisplatin 2x. PEG for 10 wks. CT 12/12,2/13,5/1 3,9/13-allclear
Hockeydad #154898 09-22-2012 10:37 AM
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One other thing to note. Since my husband had robotic surgery to remove the tumor (on his tonsil) as well as a dissection that removed the effected nodes...the radiation did not have to destroy a primary tumor; it was just looking for potential microscopic cells. We met a number of patients while undergoing treatment. Those where the tumor was "attacked" by the radiation seemed to have different side effects.

Wishing you the best in your treatment. The time actually goes very quickiy. You will soon look back on your "autumn to forget" and the next thing will be a festive Hoiliday season. Before you know it!


Wife to 58 year otherwise very healthy husband(and the sweetest man in the world). T1N2b SCC. June 2012 TORS Tonsillectomy/mod neck dissection and 10 lymph nodes removed. Path showing 3 bundled nodes, slight ECE. IMRT 30x and Cisplatin 2x. PEG for 10 wks. CT 12/12,2/13,5/1 3,9/13-allclear
Hockeydad #154923 09-23-2012 06:10 AM
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Our experience on this site is that appx 10% of patients receiving radiation breeze through it like Goodhealthahead's husband and 10% start haveing side effects from day one and end up having a horrible expeience. The remaining 80% suffer from about the 4th week of Tx through the 3rd week of post Tx.


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.
Hockeydad #155255 09-28-2012 04:32 PM
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Hi all,
Finally, treatment starts Oct 1, 3BB cisplatin and 35 IMRT. Doc's scheduled Oct 8 until I said why wait. After some proding both docs said we can do Oct 1.

First symptoms 6/20 treatment starts 10/1. I hope this is fast enough. Hopefully cured by Thanksgivigs.

Last edited by Hockeydad; 09-28-2012 04:33 PM.

Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
Hockeydad #155266 09-29-2012 03:56 AM
Joined: Sep 2012
Posts: 35
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So glad to hear you're getting started; talk about a mixed blessing. You want to get it started so you can get it over with, but the reality of it is terrifying. Ok, so maybe I am projecting my feelings on you, but I (should) start on the 8th, and that's how I am feeling. And good for you for prodding your doctors. Sometimes I think they need some pushback from us!


Stage 4: Mid-line BOT primary; Left Lymph Node 4-5cm HPV+
Chemo/Rad 10/08/12; 3 big doses cisplatin
Updated 10/16 refusing Cisplatin; due to side effects
Considering Carboplatin; discussing with doctors.
Corp. Trainer- South New Jersey
Life is What Happens When You're Busy Making Other Plans.
Hockeydad #155268 09-29-2012 06:13 AM
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Posts: 8,311
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Good luck HD. Be sure and post throughtout, we can help along the way.


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.
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