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hyper taste?, etc.

donfoo's picture
donfoo
Posts: 1329
Joined: Dec 2012

Hi all,

 

Just wraqpping up three weeks post from a very non-typical cancer survivor. From all I read and planned was that 3 weeks out I was expecting the effects of rads just starting to back off. All the other reported side effects such as mucous, soreness, pain, etc. would also be sprinkled around.

I have no idea why I am experiencing such unusually light side effects, I do believe in my heart all the docs, from the surgeron ENT, the MO , and RO, dossimetrist and medical physicists, did not get gun shy and back off the trigger.

Hopefully, knowing some do escape quite unscathed is good, something to hope for, not just some made up potential for an easier ride, is helpful. I surely do not intend in any way to make the suffering feel worse but rather that there are folks who do well.

This entire third week post tx has been very stabilizing and I'd say I am 90% fully recovered. The only side effects I have from cancer treatements is having lost weight,  very slight dried burnt skin on neck, and slight soreness in throat, mostly upon awakening. A little soda/salt gargle and a swish of Magic Mouthwash takes the sting off and on I go.

I do sleep a lot but it is not fatigue or even pure exhaustion. I do get very tired and will sleep 20 hour at a stretch but feel really recharged when getting up. Not like fatigue where you never feel rested, or exhaustion where you are so dead to the bone when going down. It is like a normal wake/sleep cycle except it is not 8 hours of rest but 16 or more.

The only other side effect is taste. Nearly everyone reports LACK of taste. The past week my taste has come back like a bullet train. Hyper sensitive and supercharged with flavors of all kinds. It is so strange since I have no recollection of anyone posting this sort of reaction. All taste is 100% and sodium is the sole thing that creates discomfort while I eat. Like tonight, I had a couple plates of fresh steamed jasmine rice, steamed zucini and moist meatfloaf with very minimal seasonings. It was absolutely delightful to eat. I could taste every subtle taste in all the food. Nothing off tasting or under flavored. Just very pure and clear - each flavor having its unique characteristics. Not complaining but what is this all about? All new to me.

A few weeks ago there was the PEG bruhaha and again, not having any intent to make any patient feel bad, stated I was not doing no PEG. Just as treatment ended, a deep sense of momentum, thrust, and mass built up and gave me some very strange asnd odd power. Rather than the next three weeks of the effects of radiation continiung to ravage my body, things stabilized and did not get worse the past several weeks. The main side effect was the horrible ulcers and sore and burning on my tongue. But even that did not get worse, it moved around and then little by little started shrinking. I would say about day 18-22 the sores really closed up, still leaving some pain but surely not what I expected or planned for.

Just continuing to be the one who like to stir things up. I thought I would add a few of my insights to what I think helped some of my rapid recovery. Remember everything I share is my own personal experience and zero based on science or fact, purely anecdotal.

1) Mucositis and thrush. My take on this early on was to be very aggressive in watching each new ulcer and sore. I burned out one LED flashlight then bought a small tactical unit to really light up inside my mouth and the back and down the throat. Many times everyday, surely at least half a dozen times, I would gargle with soda/salt to clear the light mucious and spit in the mouth area. Then the flashlight for a very detailed look at each and every sore, ulcer, patch and coating of ick. Early on I did two things. First, I would apply dry salt directly on the open sores. OUCHIE, OUCHIE, OUCHIE. Then I started to rinse with pure hydrogen peroxide and rinse and rinse until all the foaming was gone, a sign all bacteria was dead for the time being.

Thrush to me meant that something got pretty infected and imflamed and I may have come close a couple times with the onset of thursh and used Nystatin to stop it. Also, extra scrubbing of the sores and ulcers using a waterpik with that spoon scraper attachement worked wonders for spraying water right where i wanted it to go. I would mix salt/soda mix into the waterpik and use that to blast away at the wounded tissue. yes, OUCHIE.

I do believe being so watchful and proactive kept this as much to a minimum as possible. No stopping the onslaught of the ulcers and sores as they are the direct product of chemo and radiation. But by really really staying on top of it all, it could not spread or create more issues. That is my opinion.

Hydration for me was a weak point. I knew early on that staying hydrated was an issue so I requested extra saline IV infusions every week alongside the regular weekly chemo treatments ( I had a three week cycle and weekly chemo cycle througout). I would get full infusion on Monday and extra saline on Friday. Ireally believe that the extra saline helped me stay minimally hydrated.

Nutrition - What I did a bit different here was to load up on protein. Protein shakes all the time and then instead of water which caused burning I always had liquid Muscle Milk ready to injest. It was far more soothing as well as a constant source of protein. After all my reasearch I totally banned the notion of the ensure type supplements. When I read the ingredients I saw they are basically sugar syrup sprinkled with vitamins and some minerals.

The body tissues needs protein to rebuild no simple carbs. Calories are the same; 4 calories per gram of carb or protein. So to me there was no use for simple carbs and pure whey protein and BCAA were what I pretty much consumed for a few months. Actually, my weight is having some trouble stablilizing so I need to start protein drinks to generate the few more calories each day to get into the net gain column.

I'm sure there are skeptics laughing at every theory I put forth but it all makes sense to me. I guess I could just off-handedly just say I was one of the lucky onews but  I think that all the questions I put to every medical professional helped get a bit more attention and critical thinking from each to review my case with a bit more interest due to my own passion and education I had gained. Often times, I got positive comments about the knowledge and interest  I was taking in all the details of my case.  I feel it made a difference.

I wish there was more I could offer to the many who continue through recovery other than state it does get better, a generality to which there are always exceptions. At this point, all I can do is plan for the upcoming scans and find techniques to stomp out as much scanxiety as possible. Thanks to all for all the support I have received. I wish I could do more to pay back what I have been given here.

 

CivilMatt's picture
CivilMatt
Posts: 3093
Joined: May 2012

Don,

You stand triumphant in your quest to reduce side effects of cancer treatments.  Whether anything you did or did not do directed the outcome is debatable, but regardless, it makes a heck of a good story and maybe helps the (future) cancer recipient deal with the fear by being more proactive in their defense and treatment planning.

While I can see the quality aspects to your methodology, when I discovered I had cancer I was to shaken to self-direct and had to rely on my team for many of the decisions. Looking back, sure I could have done better, but a do over is not an option.

So here we are, either your rad machine was unplugged or you mapped a pretty good path through this hell hole and yes you are Abi-Normal and yes you can pick-up your key to the H&N restroom next week.

Peace brother,

Matt

The only funny thing about my taste is I can taste sweet corn and could right after treatments, but I can only faintly taste sugar, go figure.

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

That is unique for sure....

It's hard to assess if you got through treatment relatively unscathed is because you're lucky, or because you took such hyper care of yourself.....I'm inclined to think it's because you went to any length...above and beyond the call of duty....to get your body through this.  Being able to sleep for 16 hours straight through surely gives your body some decent "self-repair" time....I was never able to pull that off.....One thing is for sure......the list of things you did to get through treatment will help others just starting....Pouring salt in the mouth wounds might be a bit much for most, however....LOL. 

p

PS....I couldn't believe you were able to popped that Zylemelt into your mouth after seeing the sores you were dealing with....I thought about that several times over the last few weeks.....you are tough.....I would have spit that sucker out Smile

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Non-Typical...., come on, admit it....you really mean "Abi-Normal" ..., LOL.

JG

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Don,

You were really proactive about your treatments and looking out for obstacles, I'm sure this helped!  I hope that my dad has an easy ride through his last few weeks with treatment.  So far he Is about half done.  He has 16 (out of 35) rads left and 1 chemo here in a few weeks.  I'm ready for it all to be over so I can see dad begin to recover! It is comforting to read a story such as yours, since all of us newbies have such a horrified image of cancer (which we should!) but, typically you don't read many stories like this.  Praying that you continue to feel less and less discomfort with each day! Praying for everyone.

Cherie

donfoo's picture
donfoo
Posts: 1329
Joined: Dec 2012

Thanks for you kind comments. I am trilled reporting my experiences are viewed in a positive light and hope to serve as encouragement that some do find a smoother path through these horrible, yet necessary treatment plans we each must undertake.

Kind of a funny story when I consulted with my RO on the technology and procedures for preparing the treatment plan. I read a lot about the linear accellerator that was selected to treat me. Later I asked why I got the latest and greatest; they said because HNC treatment is the most sensitive to treatment they want you in and out in as much comfort as possible. So, even something like this is a clue to ask when you consult with your RO. Find out what machines they have and to which you are being assigned. If you got the old jalopy maybe give them a poke and ask for the smooth ride!

During my chat with the RO, I mentioned the state of the art software program and asked if he used that for the mapping. I actually think I caught him a bit off guard as he stuttered a yes or some other program. Honestly, I think I caught him off guard and these sorts of little things are psychological tactics to get your doctors attention as being more than just another plain old run of the mill HNC case. I do think it is the dossimestrist job to operate the program with the guidance from the RO, so may be a bit unfair to stick the RO with the falter. Nonetheless, it certainly makes the doctor snap to attetion that he has an informed and educated patient across from him.

I also really was interested in the mapping and wanted him to show me the mapping for my treatment. While we discussed the various areas in the map and the various dosage being assigned, I asked again, why am I being radiated on the whole left side of my neck when there was no sign of cancer. He said it is pretty standard to ensure a total kill even if something was missed during diagnosis. Then I replied to be careful to preserve my parotid glands, my surgeon ENT mentioned that he felt my salivary function would still operate some since the parotid on one side would be spared. Then I see the map showing 5300 all on the left side. After such an exchange, I would not be surprised if the RO/dossimetrist review and redirect some of the rays after a chat at the water cooler and my case comes up. Who knows, at least it makes a good story and is plausible and surely would not get a second look unless having something trigger the relook.

Sorry if my posts get long winded but my memory is really bad so I have to compensate and write stuff down. Good to pass along some insights, they may be all in the chemo fog but could have somwe truth to them.

best to you all, don

Johnny H's picture
Johnny H
Posts: 3
Joined: Jul 2013

My treatment team brought up the fact that they used state of the art equipment and the latest software. They were happy to explain the mapping process and are confident I'll have some salivary function left. When the head of the beast is where I can see it, its interesting to see the MLC's move and change shape to form the beam. Today will make me tx # 20 of 35 so I'll soon see if they're right.

TracyLynn72's picture
TracyLynn72
Posts: 747
Joined: May 2013

 

The salt directly on the sores made my eyes water to just read about!! Laughing It sounds like it helped you tremendously!  I have to admit, I'm so jealous over the sleep.  I have been getting only 2 hours at a time until I have to get up and gag/choke/spit.  I did sleep 5 straight hours last night and it was wonderful! It's great to read that you are doing so well!  

sin9775's picture
sin9775
Posts: 198
Joined: May 2013

I don't know how I missed this post, but I am glad I stumbled on it today.  Thank you so much for sharing.  It gives me great hope for my brother.  You are a real inspiration to everyone out there who is trying to be proactive in taking care of themselves.  I have to agree with others, however, the whole salt on the wound thing is just slightly on the masochistic side! Cry  Personally, I believe that it doesn't matter a bit if what you did or didn't do is to be credited with your ease of side-effects; I believe that by remaining so pro-active it made you feel less impotent and gave you great hope!  You didn't let the cancer control you.  You did your BEST to control it! It gives us all hope too.  I hope and pray you continue to have an "easy" time of it.  God bless, my friend.

 

~Shawn~

donfoo's picture
donfoo
Posts: 1329
Joined: Dec 2012

Shawn,

I still dream about each and every one of the ulcers and sore and patches. I never did get to naming them but constant vigilence of each and every one of them and watching their response to trying various treatments did make a difference. It was not like by any means I had any ability to control what showed up and planted itself in my mouth but I could mount as much and offensive against what came to fight each day.

Now just crossing into four weeks out I really have zero side effects; nothing, maybe just the slightest dry mouth and a slight pinch under the chin each morning but on the scale of what is reality here. I am like 99% fixed for now. Thanks again

cadharose's picture
cadharose
Posts: 51
Joined: May 2013

That's great to know you're doing so well, donfoo, and it does give hope to others.

Is there anything specific you did that you think helped to ward off dry mouth?

I'm 3 weeks out from treatment and I feel I am doing very well considering. I can taste salt now very well and can taste many foods. However, my sweet taste has stepped out for the time being. Hopefully it will be coming back soon, just as my salt did. My sore throat and mouth sores are getting better day by day. My energy level is way up and I'm sleeping the normal 8-9 hours per day again. I feel good. But I would like to be able to do more for my dry mouth.

donfoo's picture
donfoo
Posts: 1329
Joined: Dec 2012

Dry mouth is caused by the salivary and parotid glands getting blasted during raditation. In terms of being proactive, I was very clear with the RO to save my spit! I said, hey half my side has no sign of cancer so you should be able to save at least one side's salivary glands. He said they still were going to paint that whole side with 5300 grays just to be safe. I was OK with that but mentioning it could very well have added an adjustment to the rad map because I have no dry mouth now (6 weeks).

Even at 3 weeks I was eating all foods again, just on some things had to do the chew chew sip swallow routine. The only thing that messed me up recently was when I bit into a dry flakey turnover pastry. Oh Man! Now that was dry and instantly required some fluids to soften that up; other than that all good. don

HobbsDoggy
Posts: 165
Joined: Feb 2013

You took a very proactive part in your treatment.  I did some, but wish I would have done more.  Sometimes docs don't like that, but oh well.  I am very happy for you that things went so well and sure hope they continue that way. 

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