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What a great forum for newbies!

inittogether2
Posts: 18
Joined: Feb 2014

I found this forum by mistake while searching for info on my husbands diagnosis. He has malignant neoplasm of the oropharynx and connective tissue and other soft tissue, tested positive HPV and primary was found in right tonsil after he felt a lump in his right neck. Original biopsy going into the neck discovered a mass which was wrapped around jugular and some spinal nerves in neck. Doctor removed 90% of tumor and we immediately headed to MD Anderson in Houston Texas. Unlike my husband I like to know the whens, whys, and hows. This discussion board helped me prepare my husband for the possibility of side effects. I recently lost my father on Dec. 21 to esophageal cancer and three days later we were in Houston starting all over again with his journey. MDA is the place to be, they have prepared us for all side effects you discuss here and my husband even enrolled in some research clinics to help further the research for HNC. 

He was borderline for chemo, but after the tumor board they decided 38 IMRT radiation treatments would be enough, no surgery. He completed his 13th rad treatment today. Since Monday the effects have started to kick in, dry mouth, taste buds haywire, nausea and fatigue. Doctors are trying to protect the left side of mouth so he wears a stent to keep his tongue pushed to the left during radiation since he is getting a low dose to his lymph nodes on left side. Nightly I read some your discussions to him and encourage him to gargle, gargle, eat, eat, and drink, drink! We do neck exercises together at least 5xs a day lol. We are blessed to have great insurance plus sick leave and the means to stay in Houston close to the medical center until his treatment is over, I drive in three nights a week. As long as he feels up to it he drives home for the weekend.

I would just like to say THANK YOU for a great forum, and even if people don't actually sign in, they are reading your discussion board, I did! It has helped tremendously. God Bless you all and keep it up!

CivilMatt's picture
CivilMatt
Posts: 2900
Joined: May 2012

Inittogether2,

Welcome to the H&N forum, your introduction was so great I have nothing to add.

It sounds like you are in the thick of it (or at least the start of the thick).  I firmly believe I picked up some great tips from the H&N veterans which made my treatment and recovery better.   Namely drinking lots of water  and constant swallowing, but then again there is  the blanket and recliner and the salt, soda and water cocktail….Read the superthread it is super good.

Matt

phrannie51's picture
phrannie51
Posts: 3666
Joined: Mar 2012

You are right about this forum....these folks saved my bacon, too.  I'm glad you spoke up so we know you're here!! Smile 

p

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

This is a great forum and a mix of awesome people, survivors, caregivers, newbies, lurkers and the like...

Sounds like you are pro-active and are going to get your hubby through this...

 

Best,

John

donfoo's picture
donfoo
Posts: 1192
Joined: Dec 2012

Howdy,

Glad you found us here. Sounds like you are all over the situation already. Do hang around as there is lots of first hand experiences and tips to get you thorugh the side effects and dealing with long term issues.  Everyone is very helpful.

Good luck, Don

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

LOL, did you forget which forum you are on... Don, you're getting more abi-normal the longer that I know you.

 

JG

donfoo's picture
donfoo
Posts: 1192
Joined: Dec 2012

well - it evens out - I Welcome to CSN just as often over there. LOL

longtermsurvivor's picture
longtermsurvivor
Posts: 1780
Joined: Mar 2010

If you don't live in close, you can't get there at all, lol.  Living in the area is a mess, but you are right, the treatment is first class.  Being proactive is a very significant part of the battle.  That, and having an eye on the far horizon.  One by one the days pass, and you guys will come out the other side of this.  Keep up the good work.

 

Pat

inittogether2
Posts: 18
Joined: Feb 2014

 

Thanks guys,

Longtermsurvivor right you are with the Houston traffic, I almost have a meltdown everyThursday loding up and heading back to Louisiana! LOL.

We are totally keeping our eyes on the Horizon. Today he gets his magic mouthwash compound, he still has 25 more treatments to go and I cannot even begin to imagine what will transpire. This Forum really helps!

God Bless

Jody

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

I found this forum extremely helpful. I was (am? still in a way I guess...) in the roll of caregiver...obviously it gets hard on the one actually going through the diagnosis and treatments, but it can get pretty rough on us caregivers too. This forum, and the people on it are wonderful, I couldn't have stayed so strong if not for their words of wisdom and encouragement when I/we were at wits end. Thank you for your introduction!

Jamie

debbiejeanne's picture
debbiejeanne
Posts: 2354
Joined: Jan 2010

welcome, Jody, glad you found our family.  this place is a great source for first hand experience, suggestions, answers, ideas, encouragement and anything else you may need along your journey.  glad the docs say he will only need rads and not both.  praying for a smooth trip down this road but know that you  can come here with any questions along the way and you will get answers.  be sure he swallows everyday and drinks lots and lots of fluids.  he must stay hydrated.  good luck and keep us posted on his progress. 

God bless,

dj

wmc's picture
wmc
Posts: 378
Joined: Jan 2014

Sorry you had to look for CSN but glad you found this one. It is a great bunch of first hand knodglege and great advice. Also a place you can just vent when you need........ They help with that as well.

Stay strong and have a better tomorrow.

Bill

hwt's picture
hwt
Posts: 1881
Joined: Jun 2012

Welcome. I would like to offer an exercise to add to your husband's routine.  Get several tongue depressors and rubberband them together. Use them to hold your husband's mouth open without causing discomfort. It will help prevent trismus. The exercise even helped me after I had already gotten it. I wish I had known about it earlier. 

Best of luck for an easy journey.

Candi in St Louis 

inittogether2
Posts: 18
Joined: Feb 2014

Thanks for the tip, i am trying to picture this? two popsicile sticks rubberbanded together? lol....I'm a little blonde....

hwt's picture
hwt
Posts: 1881
Joined: Jun 2012

You could use popsicle sticks but I used tongue depressors that my doc gave me. I stack up about 6. Before trismus it probably would have been more like 10. You can tape them together, I just had a rubberband handy. Anything to hold the stack together. Then put it in your mouth to hold your mouth open as wide as possible without any real pain. 

Trismus is when you can't open your mouth as wide as you would like. This exercise is a way to avoid that from happening. I wish I had known about it earlier. Post radiaition, I can't pick up a large sandwich and take a bite. Guess I'm just thankful I can still eat one with a knife and fork.

KB56's picture
KB56
Posts: 242
Joined: Apr 2013

I wish I had known about it as well.  I had a feeding tube so all I did was sip on water for a couple of months.   I really had trouble opening my mouth wide at all and it still is not like before 8 months post tx!     Much much better for sure by working it. Do stretching exercises by opening and clouding your mouth and That stretching will help as well.  

This is a great forum to help you and your husband through the side effects.  They'll start getting worse from here on out but no matter what your husband experiences, someone will have a suggestion that will help.  you guys will make it and you're at a great facility. 

Best of luck to you and your husband as you guys cross the finish line.  stay in touch!

Keith

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