CSN Login
Members Online: 7

CRT - 3-2-1-done

donfoo's picture
donfoo
Posts: 1238
Joined: Dec 2012

3 days to go before I change to post-treatment status. It's been quite a journey with some bumpy road still to come but I have my next milestone set a month out where I hope to see most of the dusty road in the rear view mirror.

Most days on my blog I report out various factors being currently or recently been managed. The percent is amount of focus or intensity of the issue. Here is today's log entry:

Side Effects

Actively managed
70% Pain from inflammation and ulcers along sides of tongue
10% Pain in back of throat and mucositis on sides of mouth
10% Difficulty swallowing food and liquid
5% Weight loss
5% Neck burn

No active management (i.e. - nothing to do)
70% Loss of appetite
70%/was 90% Loss of taste

Side effect with low to no impact currently
Dry mouth
Excess mucous
Saliva production
Thrush
Fatigue
Tiredness
Nausea/vomit
Chemo brain/fog

Treatment for each actively managed side effect:

Tongue Pain - tongue inflammation and ulcers - These cause the greatest pain and focus now. Being on MS Contin (Morphine Sulfate ER) 30mg/8 hours, this manages the general pain in the head/neck area. It does little for the pain emanating from the tongue. Just using topicals like lidocaine, Magic Mouthwash (Benydril/anti-inflammatory, Maalox/antiacid, carafate/sucralfate) and Triamcin/Triamcinolone Aceteonide dental paste (corticosteroid for mouth sores) to keep the breakthrough pain in check. Taking hydrocodone 5-500 for the breakthrough pain also helps. Salt/Baking soda washing via swish and waterpik to keep area clean and clear and cuts the pain.

Back of Throat/Tongue Pain - This pain is more general and seems to be under control through the MS Contin ER. Salt/Baking soda washing via swish and waterpik to keep area clean and clear and cuts the pain.

Difficulty Swallowing - This condition is a combination of the first two and general for anyone undergoing HNC radiotherapy. The pain is general in nature and managed well adequately through the MS Contin ER. Salt/Baking soda washing via swish and waterpik to keep area clean and clear and cuts the pain.

Neck Burn - A large section of neck is showing like bad peeling sunburn including areas where peeling exposes sensitive skin. This area of the neck is likely generating more pain than what I feel so aided by management through the MS Contin ER. Acquaphor is applied generously to the peeled areas and this minimizes the pain in these areas. A lighter coating of Acquaphor covers the dead yet unpeeled areas. Silver silvadene on standby if the wounds become "wet".

Nutrition - Weight Loss

From the peak weight of 178 at start of rads (also peak during the past six months) to present at 161, weight has dropped less than 17 pounds (<10%). Quite pleased with this and actively managing via consumption of various protein shakes and drinks, along with soft solids and ground up solid food using baby food grinder. The goal is to hold around 150-155 during next couple weeks then maybe take it a bit lower or start rebuildng from there; depends mostly on strength I have in reserve for rebuilding core rather than using that energy to deal with more basic tissue rebuilding which would take priority.

PEG (not!)

I've been able to manage my caloric intake such that I feel increasingly confident that I can glide through the next few weeks without the need for a PEG. I started out undecided, then pro PEG early, then switched hard to no-PEG once fully informed on all the factors. There were emotional elements involved for sure but the analysis and decision process was fact driven.

Hydration

Taking the amount of primary fluids such as plain and protein fortified milk and a Boost now and then and some juices I've be consuming and adding to the high liquid content of the protein shakes and smoothies, and get the bulk of what I need to keep my hydration up. I do get saline hydration each week during my weekly infusion of carboplatin; that will be stopping now that chemo is done. I also go in for an additional saline infusion once a week, just as an insurance against becoming dehydrated. Early on during the induction chemo rounds I got hit twice with dehydration and that is an experience I know and do NOT want to repeat. So being prone to dehydration incents me to be extra alert about staying hydrated all the time. Will speak with MO this Friday about how to manage hydration going into post-tx phase.

 

Images

Here are a few key images showing the condition of the interior of my mouth and tongue and neck. You can see why the focus is on the pain in the tongue. ouchie!

       

Plans for the next phase

Going into the post treatment phase is not a cakewalk I fully understand and even today need to make conscious reference to the fact that being done with concurrent CRT chemoradiotherapy does not mean things are going to start mending in short order. Personally, I have charted the condition curve such that looking three weeks forward is where I am presently; allowing for further dip in condition and recovery to present during this three weeks. How did I plot that curve? Just feels right given the ground I have covered and the sense I have of my body and response to each side effect it has had to face and cope with these past 6 months.

Summary

That pretty sums up where things stand today and my take on things for the next several weeks. Beyond that, all I can hope is a faster rate of recovery and one with the fewest new side effects but what that really looks like is far too opaque to map out, especially with still too many unforeseen side effects that can set course direction askew. I can say I will stay true to my principles and convictions to apply all my energy to get healed as fast as possible and in the best of spirits.

To All

Thanks to all here who have been so generous in sharing your experiences and knowledge. I know I will fall short of offering back as much as I have received but will do my best to do so. Thanks again. Don

katenorwood
Posts: 1827
Joined: May 2012

I'm saving this post in my favorites so that I can pass the info. along to others in need.  I am so impressed and pleased that you're almost done and managing so well !  I'll be watching for the post when you all done and on the road to recovery.  Wishing you only the best !  Katie

robswife87's picture
robswife87
Posts: 178
Joined: Mar 2013

Don, way to go.

Rob has 2 more rads, he will be done on Friday morning. Woo Hoo

This has been hard. He has had burns on his tongue that just look nasty. His biggest problem has been thrush. Causes the most pain and just can not eat. Peg only for food and extra hydration. He continues to drink water and swallow to keep it working.

They can not get the thrush completely cleared. His RO was suprised how bad it still is even with 2 IV diflucan and on pills for a week.

Got the sunburn feeling good with Sivadene cream. 

I am so glad to hear that you are not in as bad a shape. Great job making it to the finish line.

Sandy

phrannie51's picture
phrannie51
Posts: 3725
Joined: Mar 2012

Congrats Don, on a job well done!  Even with side effects and after effects, you got to admit that the end of treatment gives a person a mental lift, huh.....freedom to just kick back and let the healing begin.

I'd dance ya around the kitchen if you were here.  Laughing

p

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Foo,

I knew you analyzed and put together a game plan from all your research but I didn't know it was so detailed. No wonder, despite the challenges, you have the beast by the horns!

Here's a well deserved congratulations and pat on the back and as always...

Positive thoughts and prayers for an uneventful and quick recovery

"T"

Skiffin16's picture
Skiffin16
Posts: 8086
Joined: Sep 2009

Awesome...glad it worked out well as I'm sure the future will as well...attitude is huge in this battle.

JG

CivilMatt's picture
CivilMatt
Posts: 2955
Joined: May 2012

Don,

I must say you’ve analyzed your case well, good job.

Reading the No Active Management “loss of taste” 70%/ was 90%, you are doing pretty well. There were a handful of things I could taste (at the end of treatment) and enjoy (crystal light sweet tea and sweet corn).  Why I could taste sweet corn is still a mystery, I could not taste sugar.

I am glad your neck burn was minor, for me it was the worst pain of treatments.

I had to print off emails between me my Mom and my siblings to document my journey. Kind of a poor man’s diary.

Knock out these last three days.

Best of luck,

Matt

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

Wonderful news! Thank you for sharing this all with us. This took some time to write out and I think it will offer great comfort for those starting out in how you experienced your journey. Great idea!

Ring that bell!

~C

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Wow Don,

you attacked your treatment like you would any other big project and look at you now.....

Only 3 more to go !

You did a super job with all your research and it paid off for you....

I hope you breeze thru the remaining few days and then you will be well on your way to recovery.

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Don,

CONGRATULATIONS!  I bet you thought you wouldnt get here!  I remember one of my post about PEG tube and your response after reading this noway were you getting one, i felt bad like i scared you!  And now your done!!!!!!!

 

let your body heal in its time and then Get back to living after this long pause, your story has much further to go! Praise the Lord for you handeling the treatment and recieving His healing !

God Bless love ya,

Rachel

Duggie88's picture
Duggie88
Posts: 539
Joined: Feb 2010

I didn't do that much home work all through my schooling years. I'm going to fire my doctor, what do you charge for an office visit?

 

I'm with "T" you definately have the beast by the horns. Keep pushing forward my friend, kick some butt.

 

      Jeff

donfoo's picture
donfoo
Posts: 1238
Joined: Dec 2012

Thanks for all the support!

Katie,
Thanks for all your support to me and so many here, taking time to visit here when you are so busy yourself. I guess this HAS to turn out well so your favorite won't point to a stinky poo..st.

Sandy,
We are travelling the same journey at the very same time and crossing into post-tx together. Do keep your updates coming along and PM anytime too. Thrush is nasty but to me it seems to be a secondary condition. The fungus grows from inflamed/infected tissue. Keep all tissue clean and you should be able to avoid the trush. Also stay ahead and consistent about using Nystatin if you suspect it is coming on; much easier to slow/halt it early on before it gets out of control.

p,
I'll watch you dance, I got no shi..ickers to do the country steps like you kicking up your heels. As to feeling a boost; I really have restrained myself from making much to do about going post-tx, as the reality is nothing gets better and changes much for a few weeks. Just my way of giving the day what I think it is worth and that is not much except to start the next 3-4 week phase which IS one I will celebrate as by then net improvements should be noticable and measurable.

T,
What to say except for thanks for the support and breaking wind for me as I was able to slipstream behind you and others ahead of me, saving me a lot of trial by fire and gliding through otherwise pretty grim surroundings.

JG,
You the man! Took awhile for it to click but the light finally did go on and how similar our cancer situations are and how similar our paths are lined up. Attitude is huge as it sets the rails down uponwhich your whole effort rides on. That has to be steady, strong, and stable, not wavering at all; otherwise it does not take much for things to become unstable and out of control.

Matt,
I'm posting a few key shots to document the physical condition right now. Might serve a good purpose to relate descriptions to seeing actual damage, although it is tough getting good clean shots in those tight areas.

Cureitall,
For those who still want to catch up, my daily blog site is at http://beatdown.cognacom.com. I'll need to start asking about that bell, not sure I seen one around this place.

Ingrid,
Each day closer offers more comfort of "making it". I can glide across at this point and that is a big statement as I have been VERY reluctant to go out early on a limb but things seem to be a lot more predictable and stable so I am feeling a bit more relaxed.

Rachel,
You always been there for us all. Hope I can offer some support back to all here but I tend to be far more empirical and fact based rather than floating on the emotional support offered here in such an incredible and plentiful manner.

I do think it was your PEG thread that swung me over with the gigante PEG on that little baby but it really got me rethinking why be a lemming unless that is what I was and that is anyone who knows me would have a very hard time making that association. My faith runs deep and strong so no matter how this turns out in the end, God is with me and supporting me and my family each step of the way. EVERY day is blessed and enjoyed as much as possible.

Jeff,
Early on I had some difficulty justifying the time and energy I was giving to do what I felt necessary to manage this life robbing disease known as cancer. Somewhere along the way, I came to view the entire challenge as basically another new job. Not one I signed up for but one I was assigned to, so make the best of it right?

Once I framed my efforts and time as part of learning and doing a new job, it became much easier to deal with on a daily basis and frankly finding plenty of challenge in "doing my job well". You can always do better, know and learn and apply more on your job, right? That was surely enough to keep me motivated 95% of the trip so far. I had a few off days but was able to sort out, dust off, and get kicking again. Here I am!

Skiffin16's picture
Skiffin16
Posts: 8086
Joined: Sep 2009

A bond that nobody can truly understand without walking the same footsteps...

JG

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

"T,  What to say except for thanks for the support and breaking wind for me as I was able to slipstream behind you"

All I can say Foo, the fact that you were behind me while I was breaking wind is a testament to your strength and fortitude. If you survived that, you can survive anything! 

"T"

 

Skiffin16's picture
Skiffin16
Posts: 8086
Joined: Sep 2009

I think you are turning to the dark side T..., I can smell Abi-Normal all over you..., ummm or maybe it's Don that I smell because of you.

JG

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

I think you're right John,

It's amazing what feeling better and eating can do for one's constitution :) Being abkle to taste is a huge added bonus. I tok a beating no doubt but overallI came through this in better shape than many and for that I'm very grateful. 

I'm a musician/artist so I've always been a little on the abi-normal side anyway ~lol~  Now, add this experience to the mix and the result should be interesting when all is said and done ;)

"T"

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Ouch! 

My neck looked a lot worse a week out of treatment but it healed quickly. I used "Special Care Cream" from two weeks prior to treatment until now. I use it a couple of times a day now.

I can see why you're mouth is hurting though! Holy sores Batman! I had sores and such but nothing that appeared to be that severe. I hope they heal up soon for you.

"T"

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network