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Okay, things are starting to happen. #200468
10-09-2020 04:46 AM
10-09-2020 04:46 AM
Joined: Oct 2020
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LocoBill Offline OP
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LocoBill  Offline OP
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First let me thank the forum and foundation for this spot to connect with fellow people affected by this condition.

My name is Bill. For the past 25 years I've been a locomotive engineer at a class 1 railroad, hence the user name. It's not entirely because I'm crazy.

Where to begin...about 6 months ago I looked in the mirror and noticed a lump under my right jaw (a future ultrasound would show it to be 6cm by 4cm, so it wasn't subtle). I made an appointment with my primary doctor and he seemed rather unconcerned. He ordered blood work and gave me antibiotics. The blood work came back fine and he said keep an eye on it. I'm a widower. I only mention this because my wife would have never let that be the end of it. I, on the other hand, was okay with doing nothing. It didn't hurt, stayed the same size and basically didn't change my life.

After 4 months a very good friend forced me to do something about it. She pressed me almost daily to have it checked out again. From here things happened fast. I made an appointment with a different doctor at the same practice as my primary and she was very concerned. She immediately sent me to an ENT. The ENT ordered a biopsy. The biopsy showed cancer with the HPV marker. Primary tumor on the right tonsil which spread to a group of lymph nodes under the right jaw. Stage 3 for those keeping score. The tumor board looked at the results. I met with 8 different specialists and a plan of treatment was presented to me. 3 rounds of Chemo and 35 radiation sessions.

The first round of chemo was manageable and today I get my 10th radiation treatment. I am losing my ability to taste things, some dry mouth, but other than that everything is "fine".

I would be grateful for any tips, suggestions and/or words of wisdom.

Anyway, thanks again for having me.

Bill


Dreaming of a world where Stage 1-4 only refer to Buick Gran Sports
Re: Okay, things are starting to happen. [Re: LocoBill] #200470
10-09-2020 05:00 AM
10-09-2020 05:00 AM
Joined: Oct 2014
Posts: 4
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LaurenKuhlmeier81 Offline
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A huge savior for me to keep weight up before I had to get my feeding tube was Scandishake. Nothing helped with the taste change for me except positive attitude smile. I’m 16yrs our from treatment and would be happy to share information about what I wish I knew then for preventative care. You’ve got this!

Re: Okay, things are starting to happen. [Re: LocoBill] #200472
10-09-2020 05:57 AM
10-09-2020 05:57 AM
Joined: Jun 2019
Posts: 212
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Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
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Posts: 212
I 2nd Scandishake - the caramel one is delicious and is 600 calories when mixed with 250ml of whole milk. Lighter to carry than Ensure too. Although Ensure is fab as it comes in so many varieties, including a juice form.

I found I had sensitivity to temperatures and ended up drinking lukewarm coffee and tepid water. Anything else was too much.

Minty toothpaste was a nightmare so I had to find a flavoured one, and use a soft brush.

I tried to keep active as possible, but also enjoyed a daily nap. The 2 really helped my body and mind when going through all of this.


F 39 x-smoker,non drink
05/20/19 T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Pembro pre & post surgery
RIG 08/10/19
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
No doing too bad smile
Re: Okay, things are starting to happen. [Re: LaurenKuhlmeier81] #200473
10-09-2020 06:12 AM
10-09-2020 06:12 AM
Joined: Oct 2020
Posts: 5
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LocoBill Offline OP
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LocoBill  Offline OP
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Thank you very much for the suggestion. I have never heard of Scandishake, but i will check it out.


Dreaming of a world where Stage 1-4 only refer to Buick Gran Sports
Re: Okay, things are starting to happen. [Re: Dizz_zzey] #200474
10-09-2020 06:15 AM
10-09-2020 06:15 AM
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Posts: 5
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LocoBill Offline OP
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LocoBill  Offline OP
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Thank you for your reply and thoughts.

Yeah, about 2 days ago my minty toothpaste started to taste like the color grey. That's something else to put on the shopping list.


Dreaming of a world where Stage 1-4 only refer to Buick Gran Sports
Re: Okay, things are starting to happen. [Re: LocoBill] #200475
10-09-2020 08:26 AM
10-09-2020 08:26 AM
Joined: Jun 2019
Posts: 212
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Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
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Tastes like the colour grey, I love it!

For me, mint stuff burnt my mouth. It was awful. I wept trying to clean my teeth. I am so thankful that I have no issues with it now.

I think you can buy Scandishake from Amazon. Ensure is available on Amazon too. I mixed an Ensure juice plus with an Ensure plus, with some milk, to make a thicker shake. Orange with chocolate was amazing, lime with vanilla and a ginger biscuit (it softens up nicely) for key lime pie. Raspberry with the mixed fruits juice and some frozen berries is a flavour bomb. I was even using the vanilla Ensure to make lattes and iced lattes. I tried it with porridge/oats and I didn't like it, but that's more of a personal thing.

Protein powders are also great to use as you can add them into anything, even with Ensure and Scandishake. I have a food background and so trying to find combinations that worked for me kept me interested into something other than cancer and recovery.

Oh and what you things you might not be able to taste now, might taste good or bad later. I was heartbroken when I couldn't drink tea for 3 months (I'm English and I drink a lot of tea). I switched to coffee for a while as rads gave me an awful salty taste in my mouth for months, and coffee was the only thing to help hide the taste temporarily. Then I lost the coffee taste. I kept trying though, and when it did appear I was so excited. It disappeared again for a bit, but I think that as your mouth is healing, things come and go for a bit. It doesn't always though. Everyone is very different. Just keep trying. Even 6 or 7 months..16 months down the line.


F 39 x-smoker,non drink
05/20/19 T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Pembro pre & post surgery
RIG 08/10/19
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
No doing too bad smile
Re: Okay, things are starting to happen. [Re: Dizz_zzey] #200476
10-09-2020 09:37 AM
10-09-2020 09:37 AM
Joined: Oct 2020
Posts: 5
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LocoBill Offline OP
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LocoBill  Offline OP
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Joined: Oct 2020
Posts: 5
I'm just now starting to feel a difference in the texture of my gums right at the base of my teeth. I fear many things are going to become very unpleasant very soon. I'm rinsing with baking soda, salt and warm water about 5x a day. I also use the Prevention brand oncology formula rinse. Funny thing about toothpaste, you don't realize how much of it is mint until you try to find a different flavor.

I'm in mourning over the taste I've lost so far. My food background beyond day to day meals covers hobby baking, smoking meats and eating as many different types of food as I can.

While at Sam's Club earlier I looked to see if they had the Scandishake, no luck. I will order some from Amazon.

I will be deeply saddened if I can't have coffee. I'm even willing to let it come to room temperature or have it over ice.

Question: My plan is to work as long as I can. At which point did pain medication become necessary? That in and of itself will end my ability to work.


Dreaming of a world where Stage 1-4 only refer to Buick Gran Sports
Re: Okay, things are starting to happen. [Re: LocoBill] #200477
10-09-2020 11:50 AM
10-09-2020 11:50 AM
Joined: Oct 2012
Posts: 1,226
Toronto, Canada
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gmcraft Offline
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gmcraft  Offline
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Toronto, Canada
Pain from radiation is likely to start at the end of the second week, start of third week. Your doctors should have prescribed pain meds for you. The rinse is a good idea as it helps to keep your mouth fresh. Do you have access to a dietitian at your hospital? He/she can advise you on what supplement you should be using. When I tried to buy Ensure for my husband at the pharmacy, I realized there were many different kinds and in fact my husband was on something that had to be specially ordered through the pharmacy. So, maybe it’s a good idea to check with either your doctor or your dietitian.


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: Okay, things are starting to happen. [Re: gmcraft] #200478
10-10-2020 02:05 AM
10-10-2020 02:05 AM
Joined: Oct 2020
Posts: 5
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LocoBill Offline OP
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LocoBill  Offline OP
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Joined: Oct 2020
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Thank you for the reply.

I should mention that I'm taking part in a double blind study to see if 1800mg of Gabapentin a day can reduce the severity of the mouth pain. They assured me that pain management wouldn't be neglected, but I think i'm going to have to ask for it when the time comes so they can jot it down in their clipboards.

That said, the difference in how I feel after yesterday's treatment (#10) versus the day before was a noticeable jump in discomfort. Friday morning there was an annoying feeling in my throat, today feels like a severe sore throat with swollen glands.

I meet with the dietitian once a week on my clinic day. She recommended Boost Plus and a couple other supplements. I was just wondering what other people were using.


Dreaming of a world where Stage 1-4 only refer to Buick Gran Sports
Re: Okay, things are starting to happen. [Re: LocoBill] #200486
10-13-2020 11:48 AM
10-13-2020 11:48 AM
Joined: Aug 2020
Posts: 17
Huntington Beach, CA
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Nels Offline
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Nels  Offline
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Posts: 17
Huntington Beach, CA
Dear LocoBill

I used muscle milk and boost and stuck with plain flavors of chocolate and vanilla creme especially later in treatment. Much cheaper thru Amazon than our local store. Other things that worked as flavors went wonky - most simple vegetables such as beans and peas, cottage cheese with canned peaches, very simple soups such as potato and cheese and broccoli, homemade ice cream shakes (add whatever you can handle such as chocolate sauce or bananas, or blueberries). French toast and pancakes still worked all the way thru.

I saw earlier someone recommended exercise and naps. Huge fan of that idea. I exercised daily, whatever i could handle, some days were hard workouts, some where just walking the dog for 10-15 min. And, I napped around the same time everyday.

Somehow I made it thru without any strong pain meds (just ibuprofen as needed) but I had plenty of thrush (three different times the fungus grew in my mouth). Everyone is different. Took me a couple weeks to complain about the pain, they took one look and said "you have thrush." They are small white or yellow spots to start but grow bigger. Causes a fair amount of pain and sensativity but fairly easy to control once you are on meds.

25 more treatments. You got this. Plenty of support here too. Let us know how you are doing.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20

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