Aloha!

dygit

Aloha,

I was diagnosed in late May with T2N2bM0 squamous cell carcinoma of the left supraglottic larynx, Stage iVa. After diagnosis, I had PET scan which showed up negative. My excellent ENT in Honolulu  (I visited 3 and consulted with a 4th) told me that he did not think that surgery of my larynx was a good option due to the long term effects and recommended that I do chemo and radiation - he told me my prognosis was good with those treatments. Had a peg tube and power port installed a few days prior to beginning treatments. Am 63, 6'2" and 200 lbs and very fit from regular tennis and 3x per week workouts in the gym.

i am now one week in - 5 rads and 1 chemo of cisplatin. Am due to get total of 6/7 chemo and 33 rads. I have read quite a few blog posts and thought I would share my 1st week experiences - have a few questions too.

The peg tube hurts my stomach still so ab exercises and tennis are out, but for exercise, lifting light weights and taking long walks with my wife. After a few days of treatment, my taste has changed and as noted elsewhere, food just aint the same! Started right away with glutamine 3x per day. Muddling thru it at this point with all the great tips and ideas on the site - thanks to all of you who contribute - very, very helpful to the newbies!

I have started anti-nausea med with generic Compazine (which makes me a little dizzy/space) but asked the doc to find me something else - I am now trying promethazine 25mg. Seems better and augment a little with Acetominphin to relieve the small headaches (Something I never have had in the past).

Nice to have the weekend off - do the chemo effects dwindle as your reach the 6th and 7th day before the next round?

Can someone please clue me in on 2 things mentioned:

What is Liquid oxy?

What is the recipe for Magic mouthwash and how do you use it?

Thanks for all the help and support while we soldier on...

cardoza33

Hello,

Hello,

Liquid Oxy, is a pain medication that is oftern prescribed to patients to manage the pain.  It is oxycodone or oxycottin (sp?).  Its an opiod.  I don't know what is in magic mouthwash, but if you ask the doc they can prescribe it.  Its mouthwash that numbs your mouth and the sores.  It worked wonders for me while I was going through treatment.  Keep up the fight!

Barbaraek

Magic Mouthwash

Magic mouthwash is a compound Rx that is used to help with the mucositis and mouth sores. There are varying recipes - ours was BMX - Benedryl, Mylanta and Xylitol. Other combinations include lidocaine. While it works wonders for some...it didn't do very much for my husband. He had better results with L-glutamine powder mixed with water, and regular saltwater rinses. Later he tried a product for mucositis called GelClair with mixed results.

barbara

dygit

Thanks for the quick

Thanks for the quick responses! Just getting all my ducks in a row with as much info as possible ahead of time....

CivilMatt

welcome

digit,

Welcome to the H&N forum, sorry that you are here, but it sounds like a treatment vacation in Honolulu (probably not).

I had a great mix in my Magic Mouth Wash, I loved it and sipped and swished and swallowed every drop of 6 bottles.  There is a  dramatic difference and success with the various vintage you receive.  Mine was  compounded in Oregon and was my top treatment for throat, mouth and tongue discomfort.  I used to take a hit in the parking lot outside of rad treatments every morning.  For me, it worked.

Watch out for constipation when using anti-nausea meds.  Keep drinking water and swallowing often.  Do you have your baking soda/salt mix for rinsing (all the time)? 

I have many NEW issues as the results of treatments, but they are my “new normal” and they are livable.

Matt

dygit

CivilMatt said:

welcome

digit,

Welcome to the H&N forum, sorry that you are here, but it sounds like a treatment vacation in Honolulu (probably not).

I had a great mix in my Magic Mouth Wash, I loved it and sipped and swished and swallowed every drop of 6 bottles.  There is a  dramatic difference and success with the various vintage you receive.  Mine was  compounded in Oregon and was my top treatment for throat, mouth and tongue discomfort.  I used to take a hit in the parking lot outside of rad treatments every morning.  For me, it worked.

Watch out for constipation when using anti-nausea meds.  Keep drinking water and swallowing often.  Do you have your baking soda/salt mix for rinsing (all the time)? 

I have many NEW issues as the results of treatments, but they are my “new normal” and they are livable.

Matt

Thanks

Yes, am prepared for constipation (taking Senna) and doing the bs/salt all during day.

Drivingdaisy

Aloha

Aloha,   Sounds like you have this pretty much covered.  I so wish I would have found this forum before I started treatment.  I could have been more prepared such as you are.  I would definitely make sure your Dr will prescribe the Liquid Oxycodone and it is available by you.  When you need it you will want it ASAP.  Are you considered a "local" ?  I visit Ohau often for family and have been to the same local hospital numerous times.  Always had to jump through hoops and it took longer to see doctors, get results, receive meds since I was from the Mainland. Just know they can be very strict on "Controlled Substances" .  I hope all goes well with your treatment.  You found the best forum for help and support.   Lisa

dygit

Drivingdaisy said:

Aloha

Aloha,   Sounds like you have this pretty much covered.  I so wish I would have found this forum before I started treatment.  I could have been more prepared such as you are.  I would definitely make sure your Dr will prescribe the Liquid Oxycodone and it is available by you.  When you need it you will want it ASAP.  Are you considered a "local" ?  I visit Ohau often for family and have been to the same local hospital numerous times.  Always had to jump through hoops and it took longer to see doctors, get results, receive meds since I was from the Mainland. Just know they can be very strict on "Controlled Substances" .  I hope all goes well with your treatment.  You found the best forum for help and support.   Lisa

Hawaii

On the big island of HI. We retired over here 4 years ago - had been coming to the island since 2000 and liked the lack of crowds and all the open space. You are correct about docs - there are some very good ones (you have to ask!), but for the ENT I ended up using a doc at Queens in Honolulu. HMSA is my insurance here and they are fantastic! Thanks for the positive thoughts - mahalo

Barbaraek

CivilMatt said:

welcome

digit,

Welcome to the H&N forum, sorry that you are here, but it sounds like a treatment vacation in Honolulu (probably not).

I had a great mix in my Magic Mouth Wash, I loved it and sipped and swished and swallowed every drop of 6 bottles.  There is a  dramatic difference and success with the various vintage you receive.  Mine was  compounded in Oregon and was my top treatment for throat, mouth and tongue discomfort.  I used to take a hit in the parking lot outside of rad treatments every morning.  For me, it worked.

Watch out for constipation when using anti-nausea meds.  Keep drinking water and swallowing often.  Do you have your baking soda/salt mix for rinsing (all the time)? 

I have many NEW issues as the results of treatments, but they are my “new normal” and they are livable.

Matt

Magic Mouthwash vintage...

Thank you for my chuckle of the day Matt. I guess we had a bad year!

barbara

RottiesMom

Headed for first

Hey Dygit..I am heading in for my first radiation treatment.   Already had 1 chemo (cisplatin).  Also had feeding tube put it.  Seems you are about a week ahead of me.  Going in now post more later!   Joanne 

Update:  today was a dry run, actual treatment starts tomorrow!

Fritz

Cisplatin wear off

Dygit:

I too am receiving 6 weekly doses of Cislatin for my Stage IVA Tonsil cancer.  I have found that for about  2 - 4 days following the infusion, I feel like CRAP!  As it starts to get better, days 5 -7 it is time to sit down for another dose.  Not sure if this is the same for everyone on the weekly poison plan; however, the side effects from the Cisplatin just magnify those from the rads for a few days. I am currently 19 rads into treatment with 14 to go and have already completed 4 weekly does of Cisplatin with 2 more remaining.

Hope this helps.

Freddie

RottiesMom

Yup Freddie!

The 4 days after cisplatin last week...just as you say.  I was so nauseous, fatigued, ringing in ears...also cold.  By Saturday I was feeling better.  I haven't had chemo and radiation together yet, that won't happen until July 12.

dygit

RottiesMom said:

Headed for first

Hey Dygit..I am heading in for my first radiation treatment.   Already had 1 chemo (cisplatin).  Also had feeding tube put it.  Seems you are about a week ahead of me.  Going in now post more later!   Joanne 

Update:  today was a dry run, actual treatment starts tomorrow!

Thanks - so far so good!

First week was ok for me other than the taste change and a little nausea.  Close your eyes and breathe deep and think of riding your horse while getting radiation. Hopefully they let you play music during your sessions - really helps it go fast! 

dygit

Fritz said:

Cisplatin wear off

Dygit:

I too am receiving 6 weekly doses of Cislatin for my Stage IVA Tonsil cancer.  I have found that for about  2 - 4 days following the infusion, I feel like CRAP!  As it starts to get better, days 5 -7 it is time to sit down for another dose.  Not sure if this is the same for everyone on the weekly poison plan; however, the side effects from the Cisplatin just magnify those from the rads for a few days. I am currently 19 rads into treatment with 14 to go and have already completed 4 weekly does of Cisplatin with 2 more remaining.

Hope this helps.

Freddie

Yep!

Over the weekend 5-6 days in, my symptoms did lessen as you said - thanks, I know what to expect now. Chemo and radiation today!

SusanUES

E komo mai...

Welcome to the Club (ahem!)...not so glad you could join us but a big hello to you! Sorry you need to do both the chemo and rads, that's tough haul.  But you will make it, this is a wonderful group to rely on, cry on, we will help you through.  Keep posting so we can give you whatever help and encouragement you need to get through the treatment and then...get on with your life!

Ke Akua pu a hui hou.

 

dygit

Mahalo

mahalo nui loa -  nui ola, a me ka pomaikai ia oe

(thank you very much - much health and happiness to you)

 I love google translate!! :-)