Just beginning this journey.

2

Comments

  • wolfen
    wolfen Member Posts: 1,324 Member
    #22
    Ruben and Jude said:

    Hi Jim. Congratulations on

    Hi Jim. Congratulations on your completion of treatment and NED results. (I picked up the NED word reading posts!) I agree, this is the nicest and most helpful group of people I have encountered during this horrible nightmare. YOU all have turned my thinking and life around. I seriously thank God for leading me here, via my husband's suggestion. 

    Hi Reuben & Jude

    Just wanted to extend another welcome to the group. They have recently taken me under their many wings and I am so grateful. I have been a member of CSN for a few years, as my daughter is an almost 5 year colon cancer survivor. H&N is a whole new ball game for us. Hubby was diagnosed last October with BOT w/ lymph node involvement followed by throat and nasopharyngeal. He also has lung cancer as a second primary. Due to many other medical problems, his treatments have been somewhat delayed. He's completed rads for the lung and just today finished his second round of chemo.

    His biggest challenge is nutrition, so I just have to keep pushing those cans of Glucerna at him.

    These folks are the best and will help you over any bumps in the road.

    Onward and Upward.

    Luv,

    Wolfen

  • phrannie51
    phrannie51 Member Posts: 4,716
    #23
    You mentioned Mugard....

    Talk to the Onc and the RO both, if you have to....about this stuff.  In the year I've been on here, I've seen Dr.'s who "threw the salesman out of the office"....to Dr.'s who have never heard of it, to Dr.'s who (like mine) handed me my first two bottles free.  It really does work, but should be started before mouth sores get a chance to get going.  I had the beginning of one when I got my first bottle, it zapped that one, and I never had another all thru radiation. 

    Another thing we learned about Mugard when I first came here....that it is very expensive...however they will work with you.  When the Mugard Co. called me about my order they asked if I could afford $345...I gasped...then they said..."how about $100"...and I said ok.  Later that day someone on here said I should have gasped twice, as they got theirs for $50...LOLOLOL. 

    As for thrush, I tried the Nystatin, but it didn't work near as well for me as Diflucon...curing it from the inside out, rather than topically.  Chewing Acidofilus tablets also helps the prescription meds do their duty. 

    The main duties of a patient is to DRINK all the water they can take in....get as much nutrition as they can during a day....sleep when they need it....swallow something everyday and keep the good attitude.  I got my feeding tube before treatment started and was glad I did....they put the fear of God into me about swallowing everyday, and even when my lips and mouth were bleeding from 5FU, I managed to get down 33 oz's of L-glutamine mixed with water during the day.  The time will go faster than you'd ever imagine. 

    One of the old members here told me when I first got here...."You will get thru this bump in the road, so plan on it.  BELIEVE!!"  This forum was the best place for me all thru treatment....I met a lot of people who were doing it at the same time I was...bus mates....you will have bus mates, too....and a big crowd at the end of the tunnel cheering you on.

    p 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #24
    Ruben and Jude said:

    Hello Phrannie. I took notes

    Hello Phrannie. I took notes from advice you had given on another thread. I'm sure you'll be hearing more from me, and I hope to hear more from you.

    What is the "Super Thread"?  Is it the H&N thread?

    SuperThread
    The SuperThread is the very first thread in the H&N Forum...

    SuperThread

    It has tons of great information and links... Sweetblood22 (Dawn) built it with a little help from me on HTML code awhile back....

    At the time, she only had her iPhone and apparently a lot of time, LOL...

    When the site upgraded a few months ago, it kind of hosed up how links are posted, so I went back and fixed it for Dawn, and to maintain it for awhile. She's having a few cancer related issues again, not H&N related, but just the same...

    So a special thought or prayer for her is always appreciated.

    Best,
    John
  • Ingrid K
    Ingrid K Member Posts: 813
    #25
    Welcome to you both...
    First

    Welcome to you both...

    First off..... NO MORE GOOGLE SEARCHING for you !  That will just scare the crap out of you and confuse things.

    Good he is getting a PEG, that will ease a lot of the worry about enough nutrition...but he MUST keep on swallowing...EVERY DAY even if it's just water, milkshakes, smoothies.  Those swallowing muscles can atrophy quite quickly and he doesn't want to lose them.

    Plus he will need the water to stay hydrated....staying hydrated is probably the number 1 thing you have to do.  Something so basic, yet so very very important.  So when he thinks he has had enough water.....have some more.

    Please, please take care of yourself (you know the old saying, you can't take care of hubby if you get sick...it's true). 

    Read the info on the Super Thread....it was put together by our own fellow survivors (Dawn) and (Skiffin) and contains years of tips and tricks to make it thru treatment and beyond.

    And don't be afraid to ask questions...Unfortunately we have all become experts in this cancer.

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #26
    I hope I am not repeating

    Hello Jude,

    Sorry you have joined our team here, but it is a good team.

    1st, please tell Ruben, "Thank you for your Service to our Country" for us. There are several Vet's here, Skiffin( John ) , George , HAWVET, and several others.

    I forget which Vet gets his nutrition from the VA, but he did mention that his nutrition was delivered to his house each month, cases of it. So, if Ruben's Doctors at the VA haven't mentioned it yet, inquire about the canned nutrition for his PEG Tube.

    Constipation is always an issue, I used the liquid form of Colace, one dose thru my tube every other day to keep normal bowel movements. Worked well for me.

    Eating issues with the mouth sores- I used the Baking Soda and Salt solution as a rinse, gargle combination. 1 teaspoon of each in 1 quart of room temperature water. Rinse and gargle as often as I needed. I also did the rinse just prior to eating orally to help numb the mouth and throat a bit. As treatment went on, I increased the salt and baking soda to 1 tablespoon.

    Med's- I was given Nurotin (Sp) which I started taking around week 5 of my radiation treatments. I was told to take the meds earlier, but the Salt and Baking Soda were doing a good job so I waited on the pain med's for a spell.

    Ask the questions and someone here has been there and done that, so you will get a reply fairly fast. Great group here.

    My Best to Both of You and Everyone Here

  • wrhbounds
    wrhbounds Member Posts: 39
    #27
    VA

    As a fellow veteran welcome.  You have come to the right place for information and support. The VA has come along ways in the last 14 years when I started down this road. The treatments have improved greatly along with the staff. Stay positive remember & apply your training it will help more than you think.

  • wrhbounds
    wrhbounds Member Posts: 39
    #28
    VA

    A

  • wrhbounds
    wrhbounds Member Posts: 39
    #29
    VA

    Dam

  • wrhbounds
    wrhbounds Member Posts: 39
    #30
    VA

    SNAFU

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #31
    wrhbounds said:

    VA

    SNAFU

    ...

    FUBAR

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #32
    There was a song....

    Hi Ruben and Jude,

    Welcome to the club no one like to join. There are some great folks and I won't reiterate what was said as it's all good advice and information. 

    There's a Jerry Garcia song called "Rueben and Charise"... one of my favs.. As a musician. I can hear a new one called "Ruben and Jude" :) 

    As many have said, "It's tough but doable"... more accurately it's "brutal but you'll survive" :)

    Best wishes, positive thoughts and prayers on your journey. 

    "T"

     

     

  • corleone
    corleone Member Posts: 312 Member
    #33
    Skiffin16 said:

    ...

    FUBAR

    ...

     

    BOHICA - sorry, I couldn’t resist to add this one…

     

  • Ruben and Jude
    Ruben and Jude Member Posts: 155
    #34
    Billie67 said:

    Jude
    I'm glad you are finding this place helpful, I know I always have.
    Just wanted to touch on one thing...before assuming that your ins wont cover him I'd ask if I were you. In many cases it's illegal to discriminate on Pre existing conditions. Fortunately that is a thing of the past for most patients these days. That being said, I'm sure the VA will be good too. Thank God you are a nurse so you can be on top of everything.
    The offer still stands if you need referrals so, if you get clearance and want to seek out other doctors just let me know:-)
    My surgeon is at USC and my med onc is in Redondo Beach and my rad onc is in Torrance, I absolutely love them all!

    I also wanted to tell you to check out the Super Thread, oozing with info! You'll find it on the page where all of the other posts are at the very top.

    Take care of yourself, you don't need to be losing weight, sleep or anything else. Your hubby is going to be ok and you are going to be an amazing caregiver.
    Billie

    Thank you Billie for your

    Thank you Billie for your support. So far, the doctors at the VA Long Beach seem to be right on track with the treatments I'm seeing others have had. Today we visited the ENT surgeon at the Los Angeles VA. He also felt the recommended treatments (Cysplatin every 21 days and 40 treatments with radiation) is appropriate. The only thing different, he prefers NO PEG tube, whereas the VA Long Beach wants one put in on April 15th. Once Ruben heard this, he was leaning towards not having it put in, then on the way home he thought about it and decided to go forward with the procedure, just in case. 

    Hope all is well with you and yours.  

    Jude

     

  • Ruben and Jude
    Ruben and Jude Member Posts: 155
    #35
    Ingrid K said:

    Welcome to you both...
    First

    Welcome to you both...

    First off..... NO MORE GOOGLE SEARCHING for you !  That will just scare the crap out of you and confuse things.

    Good he is getting a PEG, that will ease a lot of the worry about enough nutrition...but he MUST keep on swallowing...EVERY DAY even if it's just water, milkshakes, smoothies.  Those swallowing muscles can atrophy quite quickly and he doesn't want to lose them.

    Plus he will need the water to stay hydrated....staying hydrated is probably the number 1 thing you have to do.  Something so basic, yet so very very important.  So when he thinks he has had enough water.....have some more.

    Please, please take care of yourself (you know the old saying, you can't take care of hubby if you get sick...it's true). 

    Read the info on the Super Thread....it was put together by our own fellow survivors (Dawn) and (Skiffin) and contains years of tips and tricks to make it thru treatment and beyond.

    And don't be afraid to ask questions...Unfortunately we have all become experts in this cancer.

    Yep, Google scared the crap

    Yep, Google scared the crap out of me. NEVER again!

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #36
    corleone said:

    ...

     

    BOHICA - sorry, I couldn’t resist to add this one…

     

    Approach..

    Is that the approach and delivery for the next chemo session..., LOL.

  • Billie67
    Billie67 Member Posts: 898
    #37
    Ruben and Jude said:

    Thank you Billie for your

    Thank you Billie for your support. So far, the doctors at the VA Long Beach seem to be right on track with the treatments I'm seeing others have had. Today we visited the ENT surgeon at the Los Angeles VA. He also felt the recommended treatments (Cysplatin every 21 days and 40 treatments with radiation) is appropriate. The only thing different, he prefers NO PEG tube, whereas the VA Long Beach wants one put in on April 15th. Once Ruben heard this, he was leaning towards not having it put in, then on the way home he thought about it and decided to go forward with the procedure, just in case. 

    Hope all is well with you and yours.  

    Jude

     

    Jude
    You are very welcome! I'm glad both doctors agree, phew that sure makes things easier.
    As for the PEG, my own personal opinion is to get it now. My rad onc was of the belief that I may not need it and so he kept pushing it further and further out. My weight kept dropping and dropping and I am thin to begin with. It wasn't until I went for chemo one week and my med onc saw my weight and scheduled it for the next day! I so wish I'd had it from the beginning so maybe I wouldn't have lost so much weight. I guess I prefer to be proactive instead of reactive. Anyway that's just my personal opinion.

    Well we are neighbors it seems so if I can be of any help please don't hesitate to ask....seriously!

    Billie
  • corleone
    corleone Member Posts: 312 Member
    #38
    Skiffin16 said:

    Approach..

    Is that the approach and delivery for the next chemo session..., LOL.

    Yes, but even more so

    … during the radiation treatment

     

  • akbear49
    akbear49 Member Posts: 51
    #39
    Ruben and Jude said:

    Thank you Matt.

    Thank you Matt.

    Good Luck

    Take the anti nausea meds BEFORE you have any symptoms - Matt hit the nail on the head with that one.   If you wait it may be too late.   I went ahead and took both anti nausea pills - it made me sleepy but who cares.   I put on some music and took a nap - you need to conserve your energy anyway.

    I won't pull any punches here, neither did my docs and I appreciated it - life is going to suck for a few months but there is a light at the end of this miserable tunnel.   Just know that you will make it.    My wife was my food Nazi, she counted every calorie I ate earlier on and then drank in the later parts of the treatment.

    make sure you put lotion on your neck regularly to ease the radiation burn

    hang in there

    Ed

  • akbear49
    akbear49 Member Posts: 51
    #40
    Agree

    As others have already said - Welcome to our community.    The internet is a wealth of knowledge, it is also a sewage pit of misinformation.

    Gargle with salt water and baking soda often, someone else mentioned it number their throat - me too.   The radiation b=nurse thought I had mis spoken and noted that I had a mild sore throat - I corrected her and told the doc my throat was mildly numb.  I was very grateful for that

    I drank Ensure plus and my wife made me protein powder fortified smoothies every morning before my radiation treatments.   I started at 220 and ended at 203 lbs -

    A good attitude is critcal to your well being.    My daughters were each allowed to visit the radiation back room one time each during the 35 treatments - I told my girls that the machine was called a Fry-o-lator  ;-)

    Chemo gave me diarrhea - be ready for that.     Better to be ready and not need it than the other way around, the last thing you want to do is be running to the store when that hits

    Write down all your questions, give your wife and the doctor a copy - there are no stupid questions but you have to ask

    hang in there

    Ed 

  • Ruben and Jude
    Ruben and Jude Member Posts: 155
    #41
    Billie67 said:

    Jude
    You are very welcome! I'm glad both doctors agree, phew that sure makes things easier.
    As for the PEG, my own personal opinion is to get it now. My rad onc was of the belief that I may not need it and so he kept pushing it further and further out. My weight kept dropping and dropping and I am thin to begin with. It wasn't until I went for chemo one week and my med onc saw my weight and scheduled it for the next day! I so wish I'd had it from the beginning so maybe I wouldn't have lost so much weight. I guess I prefer to be proactive instead of reactive. Anyway that's just my personal opinion.

    Well we are neighbors it seems so if I can be of any help please don't hesitate to ask....seriously!

    Billie

    Thank you so much for your

    Thank you so much for your input, neighbor.  <3

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