A Progress Report from Beagledad

BeagleDad

[P=L tonsil, S= 2 nodes in lymph.  TORS with MRND.  4 of 5 negative margins, + on deep margin.  This was followed up by 7 Cisplatin chemos and 33 bilateral IMRT rads 60/54g]

Good morning to you all!  I am happy to report that last Friday, Feb 26th, I completed my last radiation treatment and am now on Day 6 of Recovery.  WOOHOO!!!

For noobs or other folks searching for information, you are in the right spot.  I got through SO MUCH better with the guidance and encouragement from these "veterans" here.  

So I want to add my two cents, as I am now officially in "vet" status.  

I have done it all.  TORS tonsillectomy, Modified Radical Neck Dissection.  7 Cisplatin chemos.  33 IMRT radiation treatments with mask. 

One thing above ALL OTHERS I found to be valid was when we vets say, "everyone's experience is different", take that to heart.  Be prepared for the worst, and smile when you escape some of them.  

None of us have the time to read every post by every patient.  But there was one thing I did not read about that I wished I had known so I could have prepared for it.  Hate to go "potty" on this forum, but it was the constipation issue.  All other aspects, the mask, the mucous, the skin burns, the emotions...all of that I had prepared for quite well thanks to the folks here (Yeah I am looking at YOU, Piplilly ...thanks for helping me keeop my baby-soft skin!).  I had the oitments, the bandages, the puddings, jellos, eggs, broths, lemon drops, and more.  I had asked the doctors about all the expectations and received pain and other meds before they were ever needed.  The people that spend their time on this forum are truly helpful folks.  I thank all you guys, Motorcycle, Russ, Mattie and Wildman ... and so many more.  Trust each of these folks, but remember that cardinal rule .... EVERYONE'S cancer and treatment is different.  

Given that, let me go deeper into the constipation issue.  I developed this after my third chemo.  But, since I was not aware of it nor preapared for it, I did not understand what I was dealing with.  Because of this lack of preparation, it took a full 3 weeks to get it under control .... a VERY tough 3 weeks.  It wasn't that I simnply "couldn't poop", it was that I was not even aware that was happening.  I chalked it up to not eating solid foods.  After awhile, though, there was no place for my belly contents to go, except out the hole created by my Gtube.  So I lacked ANY desire to eat...not due to throat irritation, but due to full belly and discomfort that came from that ALL DAY EVERY DAY.  I finally told the Rads doc, look, Doc, I gotta make a choice here... hydration or nutrition, I choose hydration.  By the time we had finally developed a good laxative program, I was almost 3 week in to this daily discomfort.  To be honest, it really never fully went away until after my last chemo.  We HNC patients have enough to deal with between burned skin, swollen and irritated throats, and dry mouth, we really, REALLY, do not need bloatied and uncomfy bellies.

So know that this is AN ISSUE .. or was for THIS patient ... and be prepared by discussing this with your chemo or rad docs during the early weeks when chemo is still not causing you any serious discomfort.  

All that being said .. here is a RAY OF HOPE.  

Everyone..I mean every-one....in this forum that I have read or with whom I have communicated -- a full 100% -- have experienced severe dry mouth, loss of saliva, loss of taste, and found the week following last radiation to be "the worst" week of their entire ordeal.  And you may, too.  So here is that Ray ... I did not.  This is tough to talk about because it sounds like bragging, and others may feel, "how did HE get so lucky?" I do not mean it in any other fashion other than to give you hope that maybe you might fare as I did.  This is a derivative of "everyone's experience is different".  I NEVER lost my saliva.  My taste was/is "muted" but I can still taste chocolate, chicken, eggs, and other things..I cannot tell you a long list because I had a very, very short list of things I tried or managed to consume.  I even had a canned peach slice a few weeks ago and could faintly taste the peach flavor.  My mouth would get dry at night but thanks to "Radiation Hack #3" (see forum list of topics) I was able to help myself in that area with a small piece of surgical tape.  (I strongly recommend you go read my 3 Radiation Hacks).  

The thing that worried or concerned me the most, though, was that Week After.  Man, I felt, how much WORSE can things be??????  By final week of rads, I was exhausted and felt like Death wamred over very single day...and my doctors and Forum friends were all warning me that next week was going to be even worse.  Oh my.  

I do not know why ...grace of God?  Great medical team?  Positive attitude?  Maybe I have some unicorn blood in me?  I dunno ... but by Day 3 of Week After I was already feeling better. Each day since then my throat swelling has reduced, my pain is almost gone, and my energy levels and attentiveness are rising.  I quit using my feeding tube for anything yesterday (Day 5) and am now eating and drinking 100% orally.  Still not eating A LOT, as the food still irritates the throat a bit, but it is all going through the pie hole now.  Ginger ale helps.

So there may be a few rainbows in YOUR treatment future as well.

Moral of the story ...read and LISTEN to us vets ... BE PREPARED.  We have lived it, been through it .. no one here is going to give you false hope nor bad advice.  We all want to see you have a better journey throgh this than we did.  Communicate with us, share with us, let us be a part of your success story.  By the way, if you have not yet read Piplillys 3 part skin solution...go find it.  I did it religiously every day.  1 bottle of each is enough; mine are still half full!  

Good luck and stay strong.  

To those that went before me ... thank you.  Each of you.  I was uber-prepared because of you guys and your stories.  I'll forever consider you all my friends.

Don (Beagledad)  

Remington25

Fantastic!

First, this is a great post for newbies so hopefully it can stay near the top of the page.  Second and more importatantly, it is so great to hear how well you are doing!  I did a trial treatment with lesser rads and chemo but man was the 10 days following my treatment horrible.  I can't begin to describe how bad it was.  However, it only took about 3 days for me to feel almost normal at that time, which, in hindsite was no where near normal.  My taste is about 50% and I am 7 weeks post treatment.  I had no taste for 4-5 weeks.  My saliva is about 5% now.  It has been tough to deal with for sleeping mainly, but my wife hooked up a couple of humidifiers that run in our bedroom constantly and they have really helped.  Please keep us in the loop on how you continue to progress!  I know the posts on this site made a world of difference for me!

ERomanO

Great news!

I'm glad you fared so well.  But I was a little shocked when you said you went 3 weeks before getting your chemo constipation under control.  I can't remember if it was after the 1st or 2nd Monday chemo treatment, but after 3 days of constipation I was getting seriously uncomfortable.  I had been using Miralax but to no avail.  When I met with my docs for my weekly assessemnt on Thursday, my hematology oncologist told me if I wasn't better by Sat to take a full dose of milk of magnesia every 2 hours until I have a BM.  So I began my MoM on Sat afternoon and about 2am that night it all let loose, and continued for most of Sunday.  I never let myself go unchecked again after that.  The same goes for drinking water.  After I became dehydrated and became faint while trying to give some blood before my treatment I never failed to drink my required 2 liters of water per day after reciving chemo.

I hope you continue to do well.  Considering the description of your surgery and treatments, I'd say you may indeed have unicorn blood.

 

motorcycleguy

BeagleDad,

I remember having the constipation problems for a few weeks. A stool softener helped.

The problem I recall is constipation mixed with diarrhea. I guess that's just part of the fun of "C" treatment.

I am VERY happy you had your last day of treatment on February 26th!!!

You are now a SURVIVOR, and you will soon be looking back, joking about the challenges you went through - and helping others down their path!

It sounds like you're actually ahead of the pack, when it comes to eating solid food. Your sense of taste will slowly come back - and it's a positive thing to find something that tastes REALLY good. (I'm 18 months out, and tried some salsa ... and I immediately went back and bought 3 more jars of it!!)

CONGRATULATIONS!!

mg

 

 

 

 

ricksmithgolfer

Congrats

I'm glad you have finished your treatment and are on your way to recovery. Sounds like you are ahead of the curve in comparison to most of us. That is a huge blessing and I pray you continie to heal at a rapid pace. Just so you know, I also had issues with constipation due to all the medications I was taking for the chemo nausea mainly and the daily dose of Ativan was also a factor. I was warned ahead of time by my doctors. I'm kind of surprised none of your doctors mentioned to you before treatment began to be prepared. Mine had me on Metamucil as soon as my problem started. Glad you have some taste already. My taste did not start coming back for 6 months. Now 2 1/2 years out and 100% of taste and saliva are back. The only issue I have is I get a neck spasm in the back of my neck maybe once a month out of the blue. It's kind of a scary thing especially the first one. I was warned this might happen. I do daily neck stretching excercises. I strongly suggest you do the same - very important to do every single day!! Food wise - When my taste was slow to come back someone on this site suggested I drink lemonade to stimulate the taste buds. Shortly after starting my taste started improving. Another food that tasted exactly as it should from the get go was bacon. Take care and God Bless.  Rick

wbcgaruss

Congrats Absolutely So

Glad for you that you are finished with treatments and are headed into a very productive recovery-Take Care-God Bless-Russ

Wildman

Congratulations

One question have you got the droopy chicken neck yet? lol if not its coming.

BeagleDad

Chicken Neck

Not sure what you mean by this, Wildman.  Although I did have that modified neck dissection whcih took out that lymph node...so I still have a small sac of some liquid that surgeon says will eventually seep back into my body.  Overall my neck looks good post surgery.  Even if still numb from it .... surgeon said that would go away, but we are almost 4 months post op and my left ear and much of left neck are is still numb.  Which, in retro, was a savior forme since that was my main side for rads; I never felt the burn. 

wbcgaruss

BeagleDad said:

Chicken Neck

Not sure what you mean by this, Wildman.  Although I did have that modified neck dissection whcih took out that lymph node...so I still have a small sac of some liquid that surgeon says will eventually seep back into my body.  Overall my neck looks good post surgery.  Even if still numb from it .... surgeon said that would go away, but we are almost 4 months post op and my left ear and much of left neck are is still numb.  Which, in retro, was a savior forme since that was my main side for rads; I never felt the burn. 

BeagleDad I Have The Same

Situation after my lymph operation. Left ear, some of the left side of face, and neck numb. Not sure if it will ever change because it may be from a cut or damaged nerve. No biggie considering the big picture of things.

tbret

BeagleDad said:

Chicken Neck

Not sure what you mean by this, Wildman.  Although I did have that modified neck dissection whcih took out that lymph node...so I still have a small sac of some liquid that surgeon says will eventually seep back into my body.  Overall my neck looks good post surgery.  Even if still numb from it .... surgeon said that would go away, but we are almost 4 months post op and my left ear and much of left neck are is still numb.  Which, in retro, was a savior forme since that was my main side for rads; I never felt the burn. 

You may get clucky again

The chicken-neck thing happens right about two months out from your last treatment. 

Of course, you may just not have a problem with it (i'm jealous, but not resentful, of your stellar resilience after radiation).   Congratulations!

When they mess with those lymph glands they stop-up or cut off the "channels" that your lymph "drains" through, so after a while it starts building up.  The fluid is still there even when the gland isn't - - - and you think "NOW WHAT?!?"

The good news is that this passes with time as you get new drainage canals.  The bad news is that you may have to do some lymph massages (not difficult or too time consuming).  

I let mine get way out of hand before I got instructed in the proper way to help that drain.  If it starts, I would encourage you to seek instruction sooner than later.

(don't ask me why it typically starts at two months, but mine showed-up like someone had set an alarm)

tbret

Maybe? Possibly?

The constipation was something I wasn't expecting, either.  For ME (everyone's mileage varies) it was the very thing they were giving me to prevent the gastric discomfort which caused it.  I got constipation as a side-effect of taking Zofran.

The tragedy / irony / comedy of it is that the more uncomfortable I got the more Zofran a doctor (*not* my oncologist, I hasten to add) told me to take.  I was assured that many, many, many people get some wonderful relief from Zofran during chemotherapy and maybe I just needed some more!!

Then, that doctor said, "I am soooooo sorry.  Try not taking Zofran."  I quit taking the medication and my problems (and other things) went away.