Post Treatment Question

New staging system 2018

I noticed in a post you did with Dave705 that your doctor told you your cancer was stage 3. I posted this under your post with Dave705 but wanted to also repost here to make sure you get this.The staging system was updated in 2018 for HPV related head & neck cancers. If your cancer is HPV related the staging on your cancer will most likely be different. If your doctor was staging yours as a non HPV cancer your staging will most likely be updated to stage 1 based on your cancer being contained to one side. One of my doctors was aware of the new staging system and one was not. I did radiation and chemo at 2 different cancer centers. I had to inform my chemo doctor of the new staging system. My treatment was in 2018 when the new staging system came out. The staging system changed because the cure rates for HPV cancers are much higher than SCC cancers. My doctors gave me a cure rate of about 95 percent for my HPV 16 cancer. You may want to ask your doctor if they are using the new 2018 staging chart. I'm kind of surprised your doctor staged yours without knowing if it was HPV related. My cancer was on the right side only. Right tonsil was primary and was in 4 nodes on same side - HPV 16 positive. Left side was clear. If you have never smoked the chances yours is HPV positive is very good. In the old staging system my cancer was a stage 4 and in the new 2018 staging it was a stage 1. For your info, I had no surgery. My treatment consisted of 35 IMRT radiation treatments and 3 high dose Cisplatin treatments. Radiation was 7 weeks Monday thru Fiday and high dose Cisplatin treatments in weeks 1, 4, & 7. I had the maximum of 70 greys of radiation to the right side and as a precautionary measure 54 greys to the left side even though no cancer showed up on the PET scan on that side. Hope this helps. Just so you know, I'm kind of a baby when it comes to being sick, if I can do this anybody can. I was fortunate and handled the treatment about as well as you can. I suggest you stay off Mr. Google and try to get all your info on this forum. I did not and that was a big mistake on my part.

As far as being worried about your long term taste ablity. Most people lose all their taste after about 2-3 weeks of radiation. It is definitely a challenge during the period this is the case. Everyones taste come back at different times after treatment. Some a few months and some longer. I probably had no taste for the first couple of months. After that you will slowly start to taste differnet things. Some things will taste the same and some may not. Everybody seems to be different. Sweets come back last for some reason. That seems to be a consensus on this forum. I'm 2 years out and have regained all my taste and saliva back. I have been very blessed. Will you ever be able to enjoy your coffee and whiskey again - yes, but probably not for awhile. I'm 2 years out and enjoy an ice cold Corona or every once in awhile a Jack Daniels and Coke. Should us cancer survivors be drinking alcohol - probably not in large quantities. Some may say not at all. This journey ahead is difficult but you can do it just like we all have on this site. Stay in contact because we all can help you thru this journey. Take care and God Bless. Rick

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Past performance is no indication of future results

 

Hi Beagledad. 

I am coming to you fresh from finding-out my four year (from diagnosis) PET scan came back N.E.D. (which means "No Evidence of Disease") just a few hours ago.  Yes, my oncologist was working late and called about 9:30pm to tell me the good news.   Some folks are just good people.

 

Modern medicine is truly a miracle even if sometimes the bureaucracy surrounding it is inexcusable.   Here we are in a pandemic and I'm standing in line to "check-in" for a scan, by which I mean I'm waiting to tell them I'm there so they can collect money prior to giving me a scan.

 

...more reminiscent of a McDonalds hamburger kiosk than a several thousand dollar fine dining experience. 

 

It's downright tacky.  I do understand the necessity, but it's still tacky.

 

I'm sorry to do this but: 

 

Until you know more about your diagnosis and what your treatment plan looks-like I disclaim everything and will remind you that I am NOT a doctor and I don't play one on TV (I hope you're old enough to get the reference).  Don't believe a word I say because I am totally unreliable and a liar and pathological and... other things. 

 

Right, then; let's get on with it.

 

To answer the easy question first and qualify myself to answer it.  I had practiced blind wine tasting for years and was pretty good at it. I was a really good food and wine pairer. I collected good stuff (artisanal, mostly) and once a week or so a group would go to a BYOB place where we knew the chef and we'd bring lots of people and lots of wine; and I helped run some classes for some people and we'd bring maps and try varietals from all over the globe and just be snooty as he**...  you get the picture. 

 

I might go weeks without a drink and then drink three bottles of wine over three days (at wine schools, not swiggin' out of the bottle like a pirate on shore leave).  When I was first diagnosed I was INCREDIBLY concerned with whether or not I was going to lose that.  It made-up a big part of my vacation plans (food and wine festivals) and was the hobby I spent money on, and I reveled in "infecting" others with a love for the oenophile lifestyle and it took-up most of my time off, it was my social life! 

 

My ENT said nothing when I expressed concern - He just sort of wryly smiled and changed the subject.  It was obvious I didn't understand.

 

Now ---

 

Red wine is one of the nastiest tasting things I have put in my mouth since I completed treatments.  It still smells great but it tastes simply awful. Not only can I not tell you if it's foreign or domestic, Cabernet Sauvignon or Cabernet Franc, I can't tell you if it's grape juice or floor cleaner.

 

So you will have to wait and see if you even *want* a Kentucky sippin' whiskey mixed with Coke or branch water.  You might find you can't stand the Coke.

 

Having said that, when I was waiting to undergo treatments my doctor told me I could have a glass of wine at night to calm my nerves. (a glass per night was "heavy drinking" for me)  I drank it.  Sometimes two.  I had to go to whites soon and once I started treatments she told me to stop.  I did.  Instantly.  I wanted the treatment to work.

 

Once I finished treatments and before I had tried another glass I asked if I could, if I wanted-to.  Her very, very carefully worded response was, "We know of no amount of alcohol which is safe."  So I pressed - "How about a 3.2% beer once in a while?" She said, verbatim, "We know of no amount of alcohol which is safe," again.  I said, "Thank you," and that ended the conversation.

 

New Year's Eve at midnight I put champagne to my lips and licked. My throat (6 weeks after treatments) burned like fire.  Nobody had to tell me I couldn't have it.  I didn't want it. Ouch.  Pretty much the same thing was true a year later, but less-so, but still it tasted like... bad stuff.  Not long after that I tried a regular old Corona.  Not good feeling, but it didn't taste awful.  Now I can do white wine and 8% IPAs if I want to (for effect) but I am just as happy with Clausthaler, a St. Pauli Girl, or my favorite "Zero to Hero," non-alcoholic beers (actually 0.5%). Some of the other non-alcoholics are awful. (to me, with MY taste buds that are left; you may have a different opinion)

I was told if my taste didn't come back in 18-24 months, it wasn't coming back.  Mine continues to improve.

 

YOUR MILEAGE WILL VARY. 

 

I only told you the story to tell you three things:  1) Yes, you probably need to think in terms of not drinking any more ever again.  2) Yes, you will probably cheat once in a while and you *MAY* be able to get away with it, but I don't think you are going to find any medical literature that says "Go head and drink."  As a matter of fact, you *can* find studies that say that even drinking in moderation has a correlation to recurrence.  Those studies are usually too small to be absolutely conclusive, but... hey... it's our necks, right?  Third, the wine schools and wine dinners and all that just stopped.  My friends didn't want to offend me by drinking in front of me if I couldn't drink.  It took me about two years to convince them that I didn't *have* to drink in order to enjoy our dinners together and that as much as anything "drove me to figure-out something I could drink."

 

Please - you don't know if you will want-to drink, or if so, what.  My advice is: Don't worry about that right now and don't pour a bunch of alcohol down on a neck full of SCC!  Soon enough, you won't want to, that's true, but if you could cure the cancer with alcohol all this other stuff wouldn't be necessary.  It's unimportant / you won't care / it will be okay.  You will have a "new normal" of your own choosing.  It'll be swell, it'll be great, gonna have the whole world on a plate...

 

If I had a do-over I would spend the time (a month) I had between diagnosis and the beginning of treatment eating lean meat and climbing stairs as much as I could and lifting small weights and doing anything I could to build / maintain muscle.  I'd watch TV with little dumbbells in my hands and those springing squeezy things and I'd eat racks of ribs and porterhouse steak and spinach and... anything else that's good for you *and* fattening.  I'd walk (use those big leg muscles) all the time and I'd, I'd... do stuff like that along with a nightly run to Baskin-Robins and try all 31 flavors.

 

...if you can and as long as you can.

 

Obviously, if you already feel puny, then the thing to do is do what you feel like you can.  But yeah.. eat and move; you're about to run a marathon and you need to be in shape and have reserves. Oh, you'll cross the finish line, but the question is "in what condition?"   How long will it take you to get back to hitting on all cylinders?  That depends on a lot of stuff, but not least on how well prepared you are going-in.

 

Yes, Russ is right.  Russ is always right.  Russ has experienced just about everything I wouldn't wish on anyone.  If Russ says, "Jump" I'll ask "How high?"  You should read the superthread.  There is a LOT of information in there, but knowing any of it is better than knowing none of it and it might help alleviate some anxiety.  I got "L'HERMITTE'S SIGN" for instance.  I wondered if I were dying or if I'd end-up paralyzed or maybe parts of me were going to start falling off and... AAAAAAARRRRGH!!!!   As it turns-out it really isn't that big of a deal and it's common and it goes away. But because I didn't know and nobody told me I might get electrical shocks down my spine and out of my toes and make me feel numb and...   Well, that was kind-of frightening the first night it happened in Lowe's.

 

And that's another thing: The pros don't want you to panic and start having every symptom you don't actually have because they told you that you might.

 

Oh!  I forgot to answer the other part of your question!  I don't think many days went by that I didn't have a pot of coffee or a cappuccino float (they're good and caloric!), but the days I didn't it wasn't because I was having to sacrifice.  I didn't want it.  So it's easier when you are doing without because you really, really can't stand the thought than it is when you are denying yourself your cup of goodness against your will.

 

I don't mean to sound flippant.  There is nothing remotely funny about going through chemotherapy and nasty, heavy, awful tissue burning/melting ionizing radiation.  Cisplatin is not a walk in the park and there are consequences that last.  You will see many around here talking about radiation as being "the gift that keeps on giving."  That's because it cures and can damage at the same time. Your oral hygiene routine is about to change... lots of things are about to change.  But...it's just change, it isn't torture.

 

It is truly a miracle that we can be treated at all and that many / most / nearly all of us survive for a long time.  

 

I have gladly traded my old grape juice for having one of my children be inspired to become an oncologist to help people like her dad and getting to see another about to graduate from a Master's program.  I've become a great uncle twice and have decorated Christmas trees and gone to the beach taken a trip to be on the side of my first volcano and told my family I love them over and over and over again - and I consider that plenty of compensation for giving-up my foodie and winey excesses.

 

Sorry for the length of my rantings. 

My experience isn't important, really.  I'm not an expert on the experience you are going to have, either.  But I can tell you that many things you are worried about will work themselves out.

 

BTW - I was right tonsil and one lymph node (really big), too.

 

Try not to be frightened too much by any of it.  It's just another thing to be dealt with for a while.  Overwhelming?  For some (it was for me -  guess I am a wimp), but not everyone.

 

I wish you restored health and peace.

I've been out treatment now

I've been out treatment now for 3 years for stage three BOT HPV related cancer. I did chemo and rads and no surgeries. Within weeks of treatment ending I was eating normally. Some foods had a slightly "off" flavor, but notihng major. Within the year my taste was back to 100% and my preferences did not change. Hope the same for you.

Coffee..

You may find this is a "no go" Just the smell made me want to... Ginger Ale, Ugh, Tea, double YUCK (And I'm english!) It was water all the way, spring water, I could tell the difference3 - purified was disgusting

But again as others have said - we are all different.

Example towards the end of treatment when my throuat was raw, I totally loved Wendys Chilli, I have no idea how I got it to go down, why it didnt hurt - but for a few weeks, Chilli was da bomb!

Look at ingredients, nutitionist said - Apple Juice, Apple sauce.. look at ingredients - ascetitic acid, ascorbic acid (preservers) imagine washing a papercut shredded hand, with lemon juice? Thats what it's like..

Throat Cancer - the cancer of a Thousand Papercuts..

Post Treatment Drinking

You should be able to resume drinking the beverages of your choice as soon as you feel up to it, which you probably already know by now, so I will just second it.  I enjoy a variety of coffee, wine, beer, and spirits. Cheers!