Got my treatment plan today, salivary function gone forever?

Post a picture of your
Post a picture of your beautiful daughter around the areas in the house that you will be resting. You have a lot to live for. Nurse should not have made such a comment. We are all different. This is no picnic, but you can do it. Do you have people that are going to help you. This is a time in your life that you will need help. This site is wonderful. Check the Superthread, information that you will need and information that you do not know that you will need. Take it one day at a time and have a good attitude. My grandsons lived with us last year when I was going through treatment, they were good medicine. Get your fight song. Get yourself ready for the battle. Know that you are in all of our prayers.

Not Necessarily
Unless they are removing them (salivary glands)....

I posted before to you I believe.

STGIII SCC HPV+ Tonsil Cancer & Lyhmpnode

Nine weeks (three week cycles), Cisplatin, Taxotere and 5FU, then seven weeks concurrent of weekly Carboplatin and 35 IMRT rads to both sides of the throat. No PEG was prescribed, but I did have the power port for chemo infusion.

I also had Amifostine Injections which are supposed to help with the thick mucous (which I never had). Also it is supposed to help saliva reproduction (which I have about 95%). I don't need a water bottle with me and I don't have any saliva issues during the day.

Early post treatment, yes, I did need water each bite of food and every few sentences of conversation....

Now at over 2 1/2 years post treatment, I have around 95% of both saliva and taste back.

I don't have anything (side effects) remaining from treatment other than a little dry at night during sleep, and my thyroid is going south slowly.

I'm on no meds other than Protonix for acid reflux. All blood levels are normal as is blood pressure...everything.

Don't get wrapped up on the could be side effects. Deal with what you get as you get them....and communicate with your MD's. If anything I can offer, hydrate often and as much as you can stand.

Oh, I also had all of the cycles and weeks of chemo, with no complications, never got sick other than occasional nausea if I thought about it too much.

Stay positive and just deal with getting treatment and be determined to get better.

I am no tougher than the next person on here. Several have gone through just as much and have recovered as much if not more than I have, more than likely you will also.

We are all different and respond different. The blanket statement she gave you to me is totally false.

Best,
John

Salivary function.
Well, I would doubt that you would turn out to be worse than my lack of spit. Not only did I have radiation, (SCC stage 4 unknown primary, 23 lymph nodes removed - 3 positive) but I had my left submandibular salivary gland removed during the neck dissection. Yes, water is a constant companion. I take very tiny sips throughout the day. Water is hard for me to swallow. Thicker is better. Milk for meals, and I steep my tea in milk as well. Because of the severity of my dry mouth, I've had a lot of dental issues. Cavities. Hoping you have had a full dental evaluation. You should before you start rads. Also dental trays for fluoride that you use daily. If you don't know about all this, you should ask. You can read about dental issues on the HNC superthread.

Also, you may want to ask about whether you can do amifostine shots before rads. A few of us did them. Again, I have links on the superthread about it. We didn't seem to get the thick ropey mucus that others got.

As far as never eating again like you do now. I would say most of the people here can eat pretty well. Some cannot eat steak any more. I came back from being soley dependent on a peg tube for 9 months. I had my peg for 18 months. BUT I had swallowing issues before cancer and I have a other genetic illness that make my life difficult. As far as eating goes, I have learned to embrace what I can eat, learned to cook and prepare things so that I can swallow them. I feel I eat quite well these days. Do I really miss some stuff?? Absolutely. However, there is plenty of yummy stuff I can eat and I am so grateful from where I was 2 + years ago, that I don't mind. When I was totally peg reliant, that was hard on me.

Honestly, at least you were told what *possibly* could happen to you. They didn't prepare me for my issues. Just remember that everyone is different and you may have an easier time than others. I really wish I would have found this site before I started rads! Wishing you only the best.

Sweets.

Skiffin16 said:

Not Necessarily
Unless they are removing them (salivary glands)....

I posted before to you I believe.

STGIII SCC HPV+ Tonsil Cancer & Lyhmpnode

Nine weeks (three week cycles), Cisplatin, Taxotere and 5FU, then seven weeks concurrent of weekly Carboplatin and 35 IMRT rads to both sides of the throat. No PEG was prescribed, but I did have the power port for chemo infusion.

I also had Amifostine Injections which are supposed to help with the thick mucous (which I never had). Also it is supposed to help saliva reproduction (which I have about 95%). I don't need a water bottle with me and I don't have any saliva issues during the day.

Early post treatment, yes, I did need water each bite of food and every few sentences of conversation....

Now at over 2 1/2 years post treatment, I have around 95% of both saliva and taste back.

I don't have anything (side effects) remaining from treatment other than a little dry at night during sleep, and my thyroid is going south slowly.

I'm on no meds other than Protonix for acid reflux. All blood levels are normal as is blood pressure...everything.

Don't get wrapped up on the could be side effects. Deal with what you get as you get them....and communicate with your MD's. If anything I can offer, hydrate often and as much as you can stand.

Oh, I also had all of the cycles and weeks of chemo, with no complications, never got sick other than occasional nausea if I thought about it too much.

Stay positive and just deal with getting treatment and be determined to get better.

I am no tougher than the next person on here. Several have gone through just as much and have recovered as much if not more than I have, more than likely you will also.

We are all different and respond different. The blanket statement she gave you to me is totally false.

Best,
John

My Advice
I listen to the nurses in terms of what COULD happen so you are prepared, but don't assume it WILL happen. The nurses and doctors had me scared to death when I started 42 radiation treatments, two round of Cisplatin, after three surgeries on tongue and neck. They said I'd need people to drive me to appointments, that I'd be in terrible pain, that I'd barely be able to eat.

As someone who lives along, it scared me a lot. And I'm glad I heard it, because I was always prepared. But the next shoe never dropped. I lost about 10 pounds during radiation/chemo, never took pain medication after surgery, ate through the whole thing, no PEG. Worked the entire time after surgery. Was back to work full-time a week after radiation was done. A month out, I'm seeing a personal trainer, drank wine tonight at dinner, and eating normally. Dentist says there is plenty of saliva. Some food still tastes lousy and I have dry mouth. But most of the predictions didn't come true.

But I'm glad I was prepared for the worst.

nwasen said:

RN delivers bad news
First off, that kind of "news" really should come from your doc and as many of us can attest to, we are all different.
My docs gave me the worst that could happen but also let me know that it may not happen to me.
I was one of the lucky ones who had saliva return after a short period of time. I did go thru the stage of thick ropey stuff that you had to spit out and had constant dry mouth.
Keep on coming online and asking questions and know that there are many who have walked in your shoes and will help to hold your hand and keep you going!
good vibes coming your way
Peace,
Nancy

"you don't miss the water"
"Till the well runs dry" an old blues song. Why don't you do some research on rapid Arc radiation which is much less destructive and shorter in duration with comparable results. There are some here who have had it and perhaps they can chime in. It's relatively new and supposedly cutting edge????? This may involve seeking a second opinion also not a bad idea.

I also found a 2009 clinical trial which is now closed but certainly worth some research on your part to see if another has opened and what the results of the 2009 trial were in which the salivary glands are moved out of harms way but still attached to your body and blood flow.

Saliva is a huge consideration and worth a little time to investigate. IMRT may be your only option but make damn sure before the well runs dry.

RogerRN43 said:

Thank you, I always feel
Thank you, I always feel better coming back here.

I'm 43. I have a 2 daughters, one 6, the other 2 (pictured 4 days old in my pic).
I have a supportive wife and great friends who have been keeping in touch with me, I fear losing some of them as time goes in the long haul of treatment and post. Will they still check in on me in 2012? Stupid question, I know, perhaps it's my loneliness having stopped work playing with my mind.

I meet my Medical Oncologist next Wed, I'll ask her about amifostine.
I live in Canada and wondering if this is a concern re: the drug:

http://www.hc-sc.gc.ca/dhp-mps/medeff/advisories-avis/prof/_2003/ethyol_amifostine_hpc-cps-eng.php

Also, I know I shouldn't be looking at stats but this boggles me as to why such a difference, historically 30-50% 5y, but recent studies...

http://emedicine.medscape.com/article/848034-treatment#a25
Quote:
Rich et al reported 2-year and 5-year disease specific survival of 96% and 92% for stage III and IV oropharyngeal carcinoma treated with TLM and adjuvant therapy. Likewise, Moore et al reported 94% disease specific survival in stage III and IV tonsillar carcinomas treated with transoral resection and adjuvant therapy.[9] The results of these studies indicate that select patients when treated appropriately can have excellent survival outcomes, despite historically poor outcomes.

Yes, I know, you can all slap me now, stop googling facts! we all respond to treatment and recover differently.

Funny how I hope mine comes back HPV+.

Off to the dentist tomorrow for workup.

Amifostine
LOL, you read the possible side effects of Amifostine and that worrys you.....

Have you looked at the possible side effects of the chemo, LOL....

Here is a post that I stuck up awhile back on Amifostine. I was a litttle bugged because someone mentioned it to their MD, and was told it was an ancient medicine.

Amifostine

For myslef I can only presume that it worked well for me.

Not many can go through all 35 injections without developing some side effects. For me I started getting extreme fevers around day 32. I started getting fevers in the range of 102.7 a few hours after rads.

We figured it out and I didn't get the last few injections.

Some on here did make it for the entire 35...it seems to have worked well for me, during and post rads.

Best,
John

Skiffin16 said:

Amifostine
LOL, you read the possible side effects of Amifostine and that worrys you.....

Have you looked at the possible side effects of the chemo, LOL....

Here is a post that I stuck up awhile back on Amifostine. I was a litttle bugged because someone mentioned it to their MD, and was told it was an ancient medicine.

Amifostine

For myslef I can only presume that it worked well for me.

Not many can go through all 35 injections without developing some side effects. For me I started getting extreme fevers around day 32. I started getting fevers in the range of 102.7 a few hours after rads.

We figured it out and I didn't get the last few injections.

Some on here did make it for the entire 35...it seems to have worked well for me, during and post rads.

Best,
John

Amifostine is a MUST
Side effects are do-able and temporary.
Loss of salivary function and all that goes along with that are not.

My doctor has me come in to see new patients if they want to talk about amifostine.
I basically come in and make spit balls ( for lack of a better description...) to make my point about amifostine.

The best of wishes to you.

Stacey

Skiffin16 said:

Unfair Advantage
Well....I am using a computer and full sized keyboard. Unlike you that is doing this all via your iPhone...

I have no idea how you have the patience to do that.

JG

Unfair Advantage
True, John! Lol. The biggest pain in the arse is working on the superthread with it. It gives me a headache. The print is just soooo tiny and trying to edit it is no picnic.

Roger! Duuude!!! I'm totally Jonesin for an iPad2. I'm selling old jewelry from my ex husband and saving my pennies to get one.

Hi Roger
In your original
Hi Roger

In your original post: "...the RN said I will probably lose all salivary function long-term". I think probably might be the key word there. Of course if she said positively or something along those lines, that's a different story.

It's a difficult situation for the med team. They have to let us know the worst case scenario. They can't really sugar coat it without opening themselves up for some grief later on if things go bad. I know when I was sitting there getting my options laid out to me, it just hit me like a ton of bricks. It was difficult to recall everything that was said, even though I took notes. Unfortunately, in some cases the worst case scenarios are the reality. Hoping your story has a happy ending Roger. Cheers.

Jimbo