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Just beginning this journey.

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

My husband was diagnosed with tonsilar cancer (post tonsilectomy two weeks ago), with one lymph node involved on the left side of his neck.  This was all after discovering a lump on the left side of his neck in late November, early December. We are fortunate we have the VA, as he is a disabled Veteran, and that's all we have. He trusts them, I have to trust them, and we both trust God is guiding them.

They did a biopsy in February which was positive for undifferentiated cells of the lymph node, then a PET Scan which showed some "possible" involvment of the tonsils. Within 5 days of that, they performed a tonsilectomy which confirmed positive for the primary. That was two weeks ago, and the recovery from that has been somewhat bruital. He was rehospitalized after bleeding, but got through it all and is now on the mend. We were told it would be rough, but that we'd get through it. They weren't kidding, and, we've gotten through it.  Shakes, smoothies, blended foods, whatever he could get down was pretty much what we did. He never got nauseated or sick.

Four days ago, he had a molar and wisdom tooth removed in preparation for radiation, and chemo. On Thursday, he was fitted for his mask. This Tuesday we go to the VA tumor board, in West Los Angeles for recommendation or concur with the current plan of chem and raditation.  Then he will be getting a feeding tube. This decision was made after reading what you all wrote about the pro's and con's of feeding tube. THANK YOU!

I would appreciate hearing from you and your recommendations for nutrition, remedies and tips for getting through this treatment. I am grateful and encouraged by what I've read and can't thank you enough for the support. This has already made a huge impact on my wellbeing.  My husband.... he's been the rock.  He has such a positive attitude.... I've been the wreck!

God Bless you all.

CivilMatt's picture
CivilMatt
Posts: 3265
Joined: May 2012

Ruben and Jude,

 

Welcome to the H&N forum, so sorry you find yourself here.

 

It sounds like your main adventure is about to begin.  If you haven’t done so already you might want to look  at the superthread at the top of the page.  It is a great source of information for those beginning treatment.

 

The treatment and subsequent side effects can be rough, but there are helpful hints. Like take your anti nausea meds before you get sick, drink plenty of water and stay hydrated, eat or drink nutritionally.  Remember to keep your doctors and nurses aware of any changes or side effects.

 

You both sound like you are ready as any of us were, I am sure you will do fine and in a few months, treatments will be behind you and life ahead.

 

Best,

 

Matt

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

Thank you Matt.

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

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

Skiffin16's picture
Skiffin16
Posts: 8187
Joined: Sep 2009

Welcome Again, LOL...

I responded to your early post, I has a similar Dx back in January 2009.... Clean and clear since...

First, calm down, it's a very treatable cancer for most of us with hgh success rates. Don't look on the interent for percentages and all... Most are very outdated, don't take into consideration the recent rising of HPV to the scene..., and bottom line, statistics are usually leaning toward a targeted audience, never... You just never really know what all went into the population of data and sample.

You sound like you are pretty educated to the process already...

If you read the PEG thread, you realize I was one that didn't have one... Once rads kicked in I just switched to more calories through Ensure Plus mainly...

Stay very very hydrated, and then drink some more on top of that... Also take in calories... Stay ahead of any pain or discomfort with prescribed meds, or communicate with your MD's.

Those are biggies, the rest will fall into place...

I lost all taste and saliva for several months, or most taste anyways... A lot returned within the first few months. But it took close to two years to regain 100% taste back (or really close), and 90 - 95% saliva. Mainly only getting tried out at night,,,

Oh, and if you stay around here, keep a sense of humor....cause some of us are crazyes, LOL... I'm just Abi-Normal though...

Best,

John

Lovethesun
Posts: 12
Joined: Apr 2013

My husband was also diagnosed with tonsil cancer, right side with one, possibly 2 lymph nodes involved.  Needle biopsy of the lymph node came back positive on 2/4/13.  Tumor board met and gave him the choice of tonsillectomy, followed by radiation and still possible chemo if the lympch node was not encapsulated....OR  forego the surgery and have 35 treatments of radiation with 2 rounds of Cisplatin.  We were told the regional cure rate and 5 year survival rate were the same either way.  He is now done with chemo and this is week 5 of radiation. No feeding tube.  The biggest problem has been nausea and trying to get calories in.  He is going in 3 times a week for 1 liter of IV fluids to stay hydrated.  This week and next and treatment will be done and then the recovery process and hopefully news after the scans that he will be clear of cancer

I too am glad I found this discussion board.

 

Pam 

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

Thank  you Pam. I'm encouraged by all the good news I'm seeing/hearing, including yours about his treatment nearly coming to the end.  He will have victory over this and next year it will all be behind you. I understand the recovery takes time, but the end result is worth it.

Take care my friend.

Lovethesun
Posts: 12
Joined: Apr 2013

My husband was also diagnosed with tonsil cancer, right side with one, possibly 2 lymph nodes involved.  Needle biopsy of the lymph node came back positive on 2/4/13.  Tumor board met and gave him the choice of tonsillectomy, followed by radiation and still possible chemo if the lympch node was not encapsulated....OR  forego the surgery and have 35 treatments of radiation with 2 rounds of Cisplatin.  We were told the regional cure rate and 5 year survival rate were the same either way.  He is now done with chemo and this is week 5 of radiation. No feeding tube.  The biggest problem has been nausea and trying to get calories in.  He is going in 3 times a week for 1 liter of IV fluids to stay hydrated.  This week and next and treatment will be done and then the recovery process and hopefully news after the scans that he will be clear of cancer

I too am glad I found this discussion board.

 

Pam 

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Welcome to our club, sorry you have to be here but welcome. You came to e right place for support and information and an ear. I recommend you stay off of other Internet sites searching for information and statistics. Most of the info on most of the sites is outdated and does not apply to us. Treatment for H&N cancer has gotten so much better and our statistics are great now. You will only freak yourself out if you go searching.
So the tumor board is going to confirm the treatment plan? Is the tumor board thru the VA? I guess what I'm getting at is this, I live in the LA area and so if you need any referrals or recommendations let me know.
What I can tell you is what others have already mentioned. Treatment can be rough but is doable. I can't stress the importance of hydration and the seriousness of it. Dehydration can set in quickly and your hubby will find himself in the hospital. I ended up in there for a week because once it sets in it's not easy to rehydrate and maintain it at first. The next thing is the nausea meds,use them as a preventive measure and not a treatment. Take it before you need it and stay on top of that. The next thing is to do jaw stretching exercises which the dental oncologist should show you how to do. The last bit I can give is swallow swallow swallow! Even though he is getting the the feeding tube for when eating gets tough, he must swallow even tiny sips of water throughout the day. I know it sounds crazy but he can lose the ability to swallow and it makes it really hard to get it back. The radiation alone makes those muscles really stiff if they are not used. That along with the soreness from treatment can make swallowing undesirable but we MUST do it.
Ok I think I've definitely put you on advice overload :-) sorry, I just don't want to leave out any useful and important info.
Again, welcome to our family and please visit often and ask any questions you might have. No question is off limits.
Take care,
Billie

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

Thank you Billie. And no, I'm not on advice overload, especially when the advice is coming from the sources of who I trust. I see hydration is so important, and that's one of the reason's we've agreed to have the PEG tube put in. I saw how difficult is was for him to swallow after the tonsilectomy, and had to have IV hydration beacuse of it, besides the fact that we couldn't stop the post surgical bleeding.

Unfortunately, I am our only income, and my insurance hasn't kicked in yet. I am quite sure the new insurance company will decline him now that he's been diagnosed, so it's the VA or nothing. I make too much money (NOT) to qualify for assistance, but not enough to pay out of pocket for medical care at this level (or any other level as far as that goes). We are relying on the VA, and are trusting God to guide them. We feel confident both will come thru, we just have to stay on top of things.

Being the sole support is at times overwhelming. There are days I can hardly function from exhaustion, anxiety and fear. This board has relieved a lot of the fear and anxiety, and I'm learning to pace myself so I'm not so exhausted.  Unfortunately, my profession as a nurse has not prepared me for this! I'm use to helping others, but am having a hard time taking care of myself.  I've lost 22 lbs in the last 4 weeks. When my husband suffers, I suffer 10 x's more. I feel so helpless.

I'm grateful for any advice/information I receive.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

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

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

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

 

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

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

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

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

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

Hi John. I made the mistake of taking a peek at some info on the internet last week and about lost it! My husband warned me not to, and spirit told me not to, but me, being the 'educated' one (that's what my hubby calles me!) thought if I didn't, it would be neglectful! HA.... not going there again!

Thank you for your advice and response. I'm so appreciative of the fact that we can communicate with people who have been there, done that.

Oh, and I'm staying around. Once I can relax, the sense of humor will kick in!  ;)

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

Hi John. I made the mistake of taking a peek at some info on the internet last week and about lost it! My husband warned me not to, and spirit told me not to, but me, being the 'educated' one (that's what my hubby calles me!) thought if I didn't, it would be neglectful! HA.... not going there again!

Thank you for your advice and response. I'm so appreciative of the fact that we can communicate with people who have been there, done that.

Oh, and I'm staying around. Once I can relax, the sense of humor will kick in!  ;)

phrannie51's picture
phrannie51
Posts: 4005
Joined: Mar 2012

Welcome again! Laughing  I can't add much to what John and Matt have said....as your hubby goes thru treatment, come here...ask questions...there is no question that is out of bounds, and there's usually someone close by to answer, or at least try. 

The SuperThread is a well of general information....when you have time kinda go thru it....just having it there will give you some peace of mind.

p

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

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?

Skiffin16's picture
Skiffin16
Posts: 8187
Joined: Sep 2009

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

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

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?

jcortney's picture
jcortney
Posts: 433
Joined: Sep 2012

Hey Jude, don't make it bad, take a sad song and make it better. (Sorry couldn't resist as it really fits)

What you husband has is bad, it's cancer but, "to make it better", it is one of the more curable cancers.  The advice you've gotten here is priceless as this community have actually gone through the treatments and can really help as things come up.  The Doc's and nurses at the VA are I'm sure terrific, but haven't actually experienced what they prescribe. So, as things progress with chemo and Rads ask questions when he is feeling new things.  Learn about Thrush and how to be prepared for it because odds are he will have it at least once.  Constipation can be a serious complication so look out and be prepared to deal with it. And, as others have told you, hydrate, hydrate and hydrate.  I didn't take that advice seriously enough and paid for it.

 We're all here to help and support you both.

Joe

 

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

Hello Joe. We've already had to deal with the constipation issue after his tonsilectomy.  I thought I would be able to handle it with bisacodyl suppositories....NOT.  He suffered so badly, the val salva action caused him to bleed and be rehospitalized.  I remember a medication we use to give our cancer patients with thrush, it was a nystatin swish and swallow. Also, yogurt is supposed to be helpful. Phrannie mentioned something called Mugard for mouth sores.  All I know is I'm going to ask for whatever has worked for others.

I am a registered nurse who use to give chemo to patients when I was on the oncology unit. My problem is I've seen too much and don't know enough. I always use to say the families or loved ones were the experts, and can see why.  I am SO grateful for this forum.

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

Hello Joe. We've already had to deal with the constipation issue after his tonsilectomy.  I thought I would be able to handle it with bisacodyl suppositories....NOT.  He suffered so badly, the val salva action caused him to bleed and be rehospitalized.  I remember a medication we use to give our cancer patients with thrush, it was a nystatin swish and swallow. Also, yogurt is supposed to be helpful. Phrannie mentioned something called Mugard for mouth sores.  All I know is I'm going to ask for whatever has worked for others.

I am a registered nurse who use to give chemo to patients when I was on the oncology unit. My problem is I've seen too much and don't know enough. I always use to say the families or loved ones were the experts, and can see why.  I am SO grateful for this forum.

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

Hello Joe. We've already had to deal with the constipation issue after his tonsilectomy.  I thought I would be able to handle it with bisacodyl suppositories....NOT.  He suffered so badly, the val salva action caused him to bleed and be rehospitalized.  I remember a medication we use to give our cancer patients with thrush, it was a nystatin swish and swallow. Also, yogurt is supposed to be helpful. Phrannie mentioned something called Mugard for mouth sores.  All I know is I'm going to ask for whatever has worked for others.

I am a registered nurse who use to give chemo to patients when I was on the oncology unit. My problem is I've seen too much and don't know enough. I always use to say the families or loved ones were the experts, and can see why.  I am SO grateful for this forum.

Hard12Find
Posts: 210
Joined: Sep 2012

Welcome, just wanted to echo what the others have said, and offer encouragement. This is the nicest group of people I have ever dealt with, and they have provided supoort and answers along the way.....I was diagnosed with tonsillar cancer with node involvement in Aug 2012, and now I am 3-4 months post treatment with a clean 3 month scan. It isn't always easy, but very beatable. Stay positive, read the super thread, put on weight while he can, and keep on the doctors, and pray for God to give them the guidance......in a few months you will be where I am, on the road to full recovery.

Jim

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

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. 

wolfen's picture
wolfen
Posts: 1238
Joined: Apr 2009

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's picture
phrannie51
Posts: 4005
Joined: Mar 2012

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.

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

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.

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

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

fishmanpa's picture
fishmanpa
Posts: 1157
Joined: Jan 2013

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"

 

 

MarineE5
Posts: 779
Joined: Dec 2005

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's picture
wrhbounds
Posts: 39
Joined: Jan 2013

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's picture
wrhbounds
Posts: 39
Joined: Jan 2013

Dam

wrhbounds's picture
wrhbounds
Posts: 39
Joined: Jan 2013

A

wrhbounds's picture
wrhbounds
Posts: 39
Joined: Jan 2013

SNAFU

Skiffin16's picture
Skiffin16
Posts: 8187
Joined: Sep 2009

FUBAR

corleone's picture
corleone
Posts: 187
Joined: Jul 2012

 

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

 

Skiffin16's picture
Skiffin16
Posts: 8187
Joined: Sep 2009

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

corleone's picture
corleone
Posts: 187
Joined: Jul 2012

… during the radiation treatment

 

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

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's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

Thank you Ed. I'm taking notes. It seems the consensis (sp) is baking soda and salt. I'm lining up my ducks with all of this wonderful input and advise.

God Bless You.

 

 

donfoo's picture
donfoo
Posts: 1408
Joined: Dec 2012

If mouth sores appear, I found that JG's suggestion of using Hydrogen Peroxide as a mouth rinse to work really great for me. I use it straight and just love that mouth foam action, sure tells me it is working on bacteria. I will rinse again until that foaming goes away, much like I have used it topically for years. Keep rinsing wound until it is all clear and no foam tells me all bacteria is killed off. 

hwt's picture
hwt
Posts: 2149
Joined: Jun 2012

Feeding tube is a good idea but continuing to swallow is very important, even if just water. I never got nauseated but followed thru with the medicine and never laid down before 30 minutes was up after using my feeding tube. I wish I had found this site before tx or that someonee had told me about the mouth exercises. I regret that I cannot open my mouth as wide as I used to and it sounds as though it was preventable. Prayers for an easy journey.

Candi 

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

Thank you Don. I bought hydrogen peroxide for the mouth and am armed and ready!

rachel12yrsuv's picture
rachel12yrsuv
Posts: 435
Joined: Feb 2013

Ruben and Jude,

I tried to respond last week when I saw this and text failed, and then I was away. I saw your post on swallow exercises and glad you aare looking into that now. Just keep up with it, it is something he will have to do for the rest of his life. I didn't have your dx, I was NPC stage 3 12yrs ago, I wasn't given a choice my peg tube was put in during my exploritory surgery @ Univer of Penn, good move on dental that a hindsight wish for me. I had REALLY good teeth @ 28, and was numb after dx, so you go through all the docs involved and by the time I got to dentist I wasn't listening, my Mom was, then I heard that they wanted to remove all 8 molars. At that moment I woke up and used a very bad word and said noway are you pulling my teeth, I had a pin hole cavity that was filled and that was it, they were white and strong. At the time I was over weight, newly married, wanted to have babies not fight cancer, now rad, chemo (I'm a child of the 80's) and they said that my hair,my precious BIG hair was gonna fall out, and now my teeth! It was the only control I felt I had and said "no", bad move.... I made it 8 yrs before 7 were pulled, but 7 yrs of dental issues, it was to the point where I would run to dentist just for novicane shot so I was at least 3 hrs without pain! So good job!

John said he wasn't gonna pull any punches, the road you are on now SUCKS, there are bad times ahead. But at the end, it is like a rebirth, the sky is bluer, the grass smells nicer, you are aware again like a baby noticing things for the first time. My spirituality was grown intensely, if not for my belief in God I believe I wouldn't be here. One night I made sure I said I love you to everyone, went to bed and prayed to God that I was tired, and if he wanted to bring me home I was ready, when I woke up the next morning I was like okay God I got I will fight and I will win, from that moment I was positive and it saved my life. Be POSITIVE and pray, God answers prayers! We sure offer up a lot here!

Take care and God Bless you and Hubby
Fight hard, love strongly and stay positive,

Rachel

Ruben and Jude's picture
Ruben and Jude
Posts: 155
Joined: Apr 2013

I can see the road is a rough one. It breaks my heart to think my husband is going to have to go through this, and then I read how positive everyone on this sight is and am thankful for all the posts and information.

Thank you for responding.

God Bless you.

I'm sure we'll be hearing more from one another.

Jude

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