| | Joined: Aug 2013 Posts: 23 Member |  Member
Joined: Aug 2013 Posts: 23 | Hi Mamacita,
Sorry to hear about your continued nausea. I was able to eat a few almonds after being zapped today. They had a little taste and are a great source of protein and magnesium. The dark chocolate sadly was without much favor. I was able to eat a whole can of chicken cheese enchilada soup. I think the creamy consistency is what was good about it. The milk favor seems to be still there and is easy to swallow.
I have this kit for sinus irrigation, which includes packs of salt and baking soda pre-measured, it felt good on my zapped tonsil today. Just slightly warm the water.
The Biotene toothpaste is very refreshing also. And you should be able to taste the mint.
Hang in there,
Steve
6/5 ENT visit
6/11 FNA biopsy on lymph node
6/13 DX T2N2b stage 4 SCC on right tonsil metastasis to lymph nodes on right side
7/8 first chemo using Cetuximab
8/20 radiation oncologist initial visit
8/21 dental clearance
Cisplatin and Radiation starting Sept 9
| | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Thanks all for the thoughts and ideas. They have been pumping me with extra fluids all week and even ordered for weekend. Also more anti naus meds by IV. To Christine's point, I learned this week that dehydration actually increases nausea. I think I got behind in the first few days and never caught back up. The nutritionist thinks that for chemo #2 they will just set up extra fluids from the start.
T, I am getting the 3 big bags. Glad to hear they won't back down easily, because neither am I! Was reassured to see I am taking all the meds Don had, except Reglen; thanks for taking the time to post the full list. Ativan has anti-naus and anxiety properties they say. It does help at moments but also knocks me on my heels, so will talk to the team about another med for breakthrough queas and also the topical rosy mentions, could have really used that this week but had no idea it existed!
Most of all thanks for the reassurance, others made it through and so will I --
(((HUGS)))
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Ask your doc right away for the hydration prescription, do not wait for the next round of chemo. Hydration can make you feel absolutely horrible. When I was dehydrated I thought I was dying. I was positive that what I was experiencing was the signs that someone goes thru before they pass away. Dehydration can be a very serious matter. When you are throwing up and cant keep things down its so easy to become dehydrated. Talk with your radiation nurse and dco right away about getting into the chemo lab for hydration a few times per week. You will be surprised at how much better you will feel when you get that done. you will walk out of there feeling almost like you did before all this started.
Hang in there!!!!
ChristineSCC 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  | | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Thanks Christine, I did start extra hydration/IV fluids Monday and will be having every day including Sat & Sun.
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Glad to see things are getting taken care of for you. Xo
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Good! Im glad you are getting hydrated. I bet it helps to make you feel alot better.
I know this whole thing stink and its not easy to do. You have a whole family of friends right here cheering you on. We are in your corner and will help you get thru all the rough patches.
Best wishes!
ChristineSCC 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 | | | | | Joined: Sep 2013 Posts: 17 Member | | Member
Joined: Sep 2013 Posts: 17 | Mamacita,
You are exactly correct it is no fun at all. I did three rounds of this many years ago and lost 50 pounds in the process. The one thing I finally figured out in the last round is that I could keep down potatoes I don't know why or if it will work for you but for me it didn't matter what type. I could keep down baked potatoes, mashed potatoes, even scollopped potatoes. I also had many things taste different. For me they tasted mettalic. Lets face it nothing tastes the same after it has come up from below. It will take time but after treatment all those taste issues pretty much went away. They Doc's are no doubt checking blood all the time and keeping a close eye on the kidney function, etc. Keep your eye on the target. Got to do what you got to do to get rid of this pesky cancer. This treatment is only the means to the end. Stay strong and keep taking it if the doc says your blood work allows it. I am living proof you can beat this cancer and have many good years with your children and family afterwards. Good luck on the remaining treatment.
In 1994 I found a 3cm tumor on my right tonsil. After 3 rounds of chemo, I underwent a radical neck dissection with a peck flap. I had a reoccurance which required twice a day radiation treatments and then had 19 years cancer free. I then found a very small tumor on my right tonsil. It was removed. Then I found a 1 cm mass near the base of my tongue on the left side. I had two partial glossectomys with bad margins and then then underwent Brachytherapy.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
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.
| | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Thank you so much, your kind words have meant so much to me.
Yesterday the MO told me that if my kidney function/creatinene levels don't normalize, he is going to modify chemo #2 scheduled for Monday by starting smaller weekly doses instead of the big bag scheduled. He said there's less data regarding the efficacy of weekly doses.
The prospect of changing the treatment plan is so disheartening for me. Obviously I can't sacrifice my kidneys, I understand the reasoning, but it frightens me to deviate from the tried and true cancer killing mode we started out in. I know I'm engaging in black/white thinking.
On the positive side I've truly rallied, getting some hours in at work, and as of today I'm 1/3 of the way through radiation.......Yippee!
(((JUGS)))
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | AKKKKKKKK
LOL
Think I will just let that typo stand.
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
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