Got my treatment plan today, salivary function gone forever?

RogerRN43

ratface said:

I do apologize
For suggesting a door that is closed to you. I may be losing my private insurance in a couple of years and was really hoping we would adopt some form of socialized medicine here in the US but as you illustrate it is a double edged sword and a complicated issue. I admire your attitude nonetheless.

No need to apologize, I
No need to apologize, I appreciate any information/comments whether I can use it or not.
Cheers

Redbanker

Loss of Salivary Function
Hi Roger,

You're beginning what we finished on June 28 and let me share our big take-away, for this and for most of life: It all depends. Nick's treatment was identical to yours. The only difference might be his IMRT was of the tomotherapy variety. At any rate, his salivary function was never affected. His taste buds are still reeling, but never a problem with salivation. I had expected what your nurse predicted. I asked his radiologist if could spare him a little function. I have subsequently made Nick crazy asking if he's noticed any reduction and he tells me no.

You have a challenging time ahead of you, but be of good cheer. You'll get through this. It's like a really bad hazing before you get to join the frat.

Nancy

robertjuy

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.

rates
Rates suck, my wife has a 20% rate for some reason. Dam the torpedoes! Break the odds and be the percentage that doesn't exist.

Hal61

Same treatment, salivary works
Hi Roger, I'm about a year and a half out of treatment, stage 3, SCC, BOT with spread to two lymph nodes on left side. If I'm reading you right, I had the same treatment, 35 days of IMRT, heavy on left, and three rounds of Cisplatin. Unless I've missed something, which is usually the case, I don't understand why the RN made such an absolute prediction.

At this point I have most of my salivary back, maybe 80%. For almost a year there was nothing, then it improved dramatically in a matter of a few weeks and has continued to do so. I couldn't tolerate the Amifostene and was told--and other posters here confirm-that I'm in the minority. Most have no problems taking it. It made me real sick all night the two times I took it.

I can only add my usual caution on Cisplatin and hearing loss/possible tinnitus. Be aware of your hearing throughout. I began to feel like my head was inside a bell after my second round. Others have commented about losing hearing at that time. Talk to your doc if this issue comes up, and round three might be changed to another chemo brand like Carboplatin.
It's easy to miss because your body is going through the grinder by then, but keep it in mind. I have ongoing tinnitus, and hearing loss. The hearing loss isn't so bad, but anyone with severe tinnitus can tell you it's a load.

best to you Roger,

Hal

staceya

sweetblood22 said:

Spit balls!
Woman, you can make spit balls?! You lucky little thing you! Lol. If I want to seal an envelope, I have to head to the kitchen sink, and wet my finger. Trying with my tongue is completely pointless.

Spit balls
I can and I am grateful..
Also that is what I love about this group--you get it--
most people don't realize what a big deal it is.

RogerRN43

What a difference a few words make...
Met my chemo MD's H&N Nurse Practitioner today, we had such a good discussion. A positive person makes so much difference and I'm so glad she's the person I call if I need first line help during the 7 weeks. She nailed some points that I distinctly remember:

-I can get by with one working parotid gland, sure it will be dry, but salivary function has an opportunity to return to some degree over an extended period (as I've been reading with some of you), particularly with my age and healing; she said a guy came back to her 1y later and said it wasn't as bad as he thought it would turn out; also some people complain of dryness when tests have shown that they have decent production.

-she went over all the side effects and gave me actual numbers that were fairly low percentage-wise for the more major ones; and when she outlined all the routine drugs that they were going to give me just to prevent nausea, it really hit home they were going to try to prevent it before it starts.

-she said if I could choose where to have oral SCC, the tonsil is the place to have it.

-she went over my general good health, non-smoker, non-drinker, fit... she said I have a very high chance of cure. I've heard this in a round-about way from my ENT (if viral origin he said), my rad RN who said "unlikely" when I said I hope it never comes back when this is all said and done... but the way the H&N NP said it to me really lifted my spirits and gave me hope when lately I've been down.
God bless her

Hondo

RogerRN43 said:

What a difference a few words make...
Met my chemo MD's H&N Nurse Practitioner today, we had such a good discussion. A positive person makes so much difference and I'm so glad she's the person I call if I need first line help during the 7 weeks. She nailed some points that I distinctly remember:

-I can get by with one working parotid gland, sure it will be dry, but salivary function has an opportunity to return to some degree over an extended period (as I've been reading with some of you), particularly with my age and healing; she said a guy came back to her 1y later and said it wasn't as bad as he thought it would turn out; also some people complain of dryness when tests have shown that they have decent production.

-she went over all the side effects and gave me actual numbers that were fairly low percentage-wise for the more major ones; and when she outlined all the routine drugs that they were going to give me just to prevent nausea, it really hit home they were going to try to prevent it before it starts.

-she said if I could choose where to have oral SCC, the tonsil is the place to have it.

-she went over my general good health, non-smoker, non-drinker, fit... she said I have a very high chance of cure. I've heard this in a round-about way from my ENT (if viral origin he said), my rad RN who said "unlikely" when I said I hope it never comes back when this is all said and done... but the way the H&N NP said it to me really lifted my spirits and gave me hope when lately I've been down.
God bless her

Roger

I agree some of our doctors just have a way of just lifting you up and blessing you when going through cancer treatment. I am also very thankful to all my RN’s who helps and pulled me through all of my treatment. Sometimes it was just a little hug right at the times I needed it the most and the assurance I was not alone.

Wishing you well
Hondo

jtl

Redbanker said:

Loss of Salivary Function
Hi Roger,

You're beginning what we finished on June 28 and let me share our big take-away, for this and for most of life: It all depends. Nick's treatment was identical to yours. The only difference might be his IMRT was of the tomotherapy variety. At any rate, his salivary function was never affected. His taste buds are still reeling, but never a problem with salivation. I had expected what your nurse predicted. I asked his radiologist if could spare him a little function. I have subsequently made Nick crazy asking if he's noticed any reduction and he tells me no.

You have a challenging time ahead of you, but be of good cheer. You'll get through this. It's like a really bad hazing before you get to join the frat.

Nancy

Saliva
I also had tomotherapy. The way it was explained to me is that since my cancer was on the right side of my throat there would be collateral damage to that saliva gland but the left side should be mostly spared. I have also noticed that the sore throat that I am developing is also mostly on the right side. At this point I still have plenty of saliva and only a moderate sore throat but I caution that it is early in the treatment. Most food tastes bad but I am finding a few things that are high calorie and tolerable. The more I read the more I realize how different everything is. People have diffent degrees of HNC, in different places and are being treated with diffent machines and drugs. Some are coming into this treatment in otherwise good health and some are not. I certainly wish everyone the best of luck but it is very difficult to make accurate comparisons and draw meaningful conclusions. The huge benefit is the fact that everyone is caring and trying to be helpful.
John