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Rads - update: CROSSED 1/2 WAY

donfoo's picture
donfoo
Posts: 1270
Joined: Dec 2012

I just finished three full weeks of daily rads and overall feeling pretty good. I am on weekly chemo as well (carboplatin 150) but my MO inidicated and I can confirm the side effects from the chemo dosing is minimal if at all. All side effects are radiation based which to date really is come down to soreness/pain in the back of my throat. 

The first and second week, the chemo did give me tiredness and some fatigue but I also attribute that to lack of hydration which caused tiredness which caused more dehydration and spirled down. 

Week three was no chemo side effects such as tiredness/fatigue as I REALLY stayed on top of hydration. This week also began increasing pain in the back of throat. Along with this came more difficulty with solid foods. During the week, I have moved to soft solids only and increasing intake of protein shakes and various smoothies.

Going forward, blenderized and liquid nutirition and very soft solids is the game plan with liquified nutrition supplying sufficient minimum daily caloric intake. Other lighter liquid drinks such as choco milk, blended yogurt drinks, etc. offer a constant supply of liquid to tally on that count.

This week was also the beginning of the narco therapies to control the increasing pain in the throat. So far, just plain hydrocodon 5-500. I'm expecting to need more such as oxy, morphine, or fentynyl patches byt my MO thinks most of the nerves have been burnt in already; will see. His comment was controlling the mucositis, currently stage 2 as I can still eat solid and drink liquids. This is of course the key to remaining PEGless. :-)

Liquid lidocaine and magic mouthwash to take the edge off the throat pain and keep the mucositis in check are the other meds for now.

Time is going by fast so far; just a couple more daily rads and I'll cross half-way mark of treatment; I'm keeping another calendar that shows that same point as the 25% mark to getting over most of the rad nastiness.

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

If it'll get much worse...

For me (and you seem to pretty much be following my same regime and reactance), I didn't get much worse from where you are, it just lasted another six weeks or so.

MM for the initial Ensure plus, water, maybe a few peach slices... More water, another Ensure or two, then a crushed Percocet in a little water for the after pain.

I still highly endorse hot showers after each feeding, LOL..., not sure why but it just made me feel much better...

Hang in there...

JG

donfoo's picture
donfoo
Posts: 1270
Joined: Dec 2012

I'm still following you in the trenches. My MO told me yesterday he did not think I would get much worse. just does not seem right as it generally feels like riding in a plane crash that crashes in 7 weeks. Plus the chug it down at any cost keeps the nutrition and water flowing.

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

Hi Foo,

Congrats on getting to the half way point with the chemo/rads. I agree that it must be the Carboplatin that is minimalizing the chemo side effects. I've heard it's less intrusive and milder than Cisplatin (which made me pretty ill by the last 3 treatments).

This is the point in my journey where I hit the wall. I felt pretty good overall at the halfway mark. It was the following week that everything started to hit the fan. I know many here pushed through it but it took me out. Between the pain, the negative reaction to the steroids, dehydration etc., the beast got a foothold. Those three things you've mentioned previously, hydration, nutrition and pain management become key in getting through the remainder of treatment. I was in stage 3 mucositis with indications of moving to stage 4 by the last week. It has since eased up a bit. 

You've prepared yourself above and beyond and I know you have the inner fortitude to beat this beast into submission! Keep up the good work and positive attitude. 

"T"

 

phrannie51's picture
phrannie51
Posts: 3780
Joined: Mar 2012

that was such a big deal for me....

Sounds to me like you're doing pretty darn good.....course, it's still one day at a time.....but you may be one of those people who peak now, and nothing ever gets worse.....how do we know till we get to the end and look back? 

No matter what tho, half way done is worth an extra smoothie.

p

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

No real way to konw until you are done, but I like to look at it as if you are halfway to meeting Mr. NED!

:)

 

Tim

Duggie88's picture
Duggie88
Posts: 550
Joined: Feb 2010

You know the old saying.........Time flies when your having fun.............

I must say you seem to doing well. I never used the calender but instead kept the ending date (March 30) in my head. I thought maybe watching the calender would be alot like watching the hands on the clock which I found out in 1st or 2nd grade after the teacher caught me constantly looking at the clock. She mad me sit by it and watch it constantly and time didn't fly by at all.

Push onward the last teatment is in sight.

Enjoy the weekend

      Jeff

jcortney's picture
jcortney
Posts: 424
Joined: Sep 2012

Sounds like you have it well in hand. Lack of hydration will hit you hard and hit form many different directions so good job on catching it early.  Half way was a big deal for me too as it was all downhill from there.

Your spirit is strong.

Joe

 

katenorwood
Posts: 1851
Joined: May 2012

Your report sounds real good.  Staying on top of the hydration and pain is very important and you are spot on with these issues.  I'll be keeping you in my thoughts through out !  Katie 

ditto1
Posts: 634
Joined: Mar 2012

and listen for those lovly words "YOU HAVE REACHED YOUR DESTINATION"

HobbsDoggy
Posts: 165
Joined: Feb 2013

Sound very much like how things went for me.  I did have a PEG, doctor sort of insisted.  Glad I had it, but I could have done the treatment without the tube, it would have been harder.  I got to the point where I hated the Insure, but it saved me so can't really complain.

My doctor said he can never tell in advance how each person will react to radiation and chemo there are so many variartions.  I hope and pray you are the I can sail though this, no more prolbems than you already have had.  I was too slow to take the pain medication and that was one of my many mistakes.

 

CivilMatt's picture
CivilMatt
Posts: 3007
Joined: May 2012

Don,

So far so good.  It was the middle of week 3 when my love for hamburgers got put on hold.  Luckily my hydration stayed good (thanks to the H&N advice). Remember to keep swallowing, it will pay off.  Not everyone gets neck burn, but if you do there are creams for it.

I truly hope the rest of your ride is smooth, but keep your eyes open for surprises.

Matt

donfoo's picture
donfoo
Posts: 1270
Joined: Dec 2012

Well, crossed the halfway point in CRT and things are knock knock, so far really well, knock knock on wood. Things were going south until a couple days ago when I took control over the various side effects and started really examining each and what to do about each. Have a few great strategies working which are detailed on my daily blog (http:beatdown.cognacom.com).

In a nutshell, the main side effect is mucositis and maybe some thrush. I have managed to contain the spread of the mucositis and actually starting to beat down one of the larger mouth ulcers. Also controlling spread of thrush it appears. zero side effects of nausea, vomit, fatigue, tiredness, drymouth, saliva still working. Sleeping well. Pain under control using Magic Mouthwash and hydrogen peroxide keeps the mucositis pain in check. Using Nystatin on the thrush. I take an occasional hydrocodone as a backstop to keep pain down if needed but needing less and less as other things are getting under control.

Morning drill is about 20 minutes long but the routine cleans it all up. First a good swish with 1/2 teaspoon of salt/soda in cup of water. Then hydrogen peroxide and then lots of foam. Lots of swishing and ensuring it gets good contact with ulcer. Repeat several times until foam gone and visual inspection of ulcer shows full white solid coat over wound. Then lay down with Magic Mouthwash, swish and just let it sit in mouth and over time allow it to tricke down back of mouth and throat. Do same thing with Nystatin. By this time I have no pain but if things feel just a bit sore I will take a hydrocodone just to keep pain under control.

Nutrition is a whole topic to itself but that is going better, getting close to getting the liquid diet formulas finalized and optimized. Fundamentally using whey protein concentrates/isloate with BCAAs and amino acid suppplements for max protein synthesis and update and 100% maltodextrin for the carbo/calories. Mix other fruits and flavors (cocoa) etc. but not so much for taste, just rounding out other vitamins and minerals.

I am really really happy now that I have a game plan and fundamental understanding of the symptoms, how to recognize and treat each, and deal wth the pain issues too. Unbelievably, I have liquid lidocaine for extra pain relief and at this point in treatment feel no need for it!

But we all know tomorrow is an entirely new day so who knows what it will bring but for now enjoying the basking in the sunshine! :-)

foo

 

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

Yep, it's a dynamic battle for sure....

Just when you think you got it figured out, it'll throw something else at you...

One battle at a time wins the war...

Keep on trucking...,

John

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

You weren't kidding when you said you were working on a plan. I could barely stay awake long enough to make any sense of anything let alone write a game plan out. It was all I could do to get through the day sometimes.

So now the end is in sight! The next big milestone will be the single digits and the countdown. You must have a high tolerence for pain. I just went close to 6 hours since my last dose (because of a nap) and I awoke hurting pretty bad. I do a similar routine though. First thing is get the saline/soda/L-Glut rinse and get the c**p out of my throat and mouth. It sooths the sores too. Next is the pain meds and then rinse again. Wait 20 minutes for the meds to start kicking in and then MM to numb everything up. 

I used to know a lot more concerning BCAA's and such but much of that info has gone bye bye after 10+ years. However, the vast majority of high end whey products have a pretty comprehensive BCAA profile and you won't need to add to it (with the exception of L-Gutamine). You've definitely got your game face on now and are as prepared as you're going to be. If I were cancer, I'd keep an eye over my shoulder if I were trying to beat you down ~lol~

Congrats on reaching this important milestone in your treatment. 

Keeping you in positive thoughts and prayer.

"T"

robswife87's picture
robswife87
Posts: 179
Joined: Mar 2013

You have a great game plan. Rob's is similar with all the rinse, spit, swallow.

He is on Taxol and Carbo once a week and just number 4. He has had no nausea or fatigue from that, in fact he loves chemo day. They pump full of pre meds and he is great for days. The pain started to take over on Wednesdays but they put him on a low dose Morphine extended release and that is taking care of the pain and no feeling wired or downered out from them.

so glad to hear you are doing so well. keep up the good work

Sandy

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