Just beginning this journey.

CivilMatt said:

Here you go

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

Thank you Matt.

Skiffin16 said:

Welcome...

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 Most are very outdated, don't take into consideration the recent rising of HPV to the scene..., and bottom line, statistics are usually leaning toward a targeted audience, never...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

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 said:

Two welcomes are better than one!!

Welcome again!   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

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 said:

Hey Jude

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

 

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 said:

Ruben and Jude

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

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. 

Billie67 said:

Hey Jude...
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

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.