One down 32 to go

Vee1 said:

Finished #8 this AM

Hi Riders,

Dad had #8..."25 to go!" he says.  Bit more discomfort and swelling.  Looks like MuGard may be preventing the miricle mouthwash from its numbing ability.  So we are stopping the MuGard to see if the mouthwash alone is better.  Also, he actually gained about 4lbs this last week.  I am using the medical strength Boost 530 calories (found on Amazon) with virtually everything with ice cream toppings (100 extra calories there) and an additive called Benecal (330 calories tasteless also found on Amazon).  It all is helping since we are starting to blend food now.  He is exercising his mouth, too.

As a concern, he is tired.  When he saw me today he said, "Kid, this sh*t is getting old!" But, we went to the treatment and he realized he (and his buddies) are 1/4 of the way through.

Hang in there...

-V

I missed two for the holiday's and one due to a broken machine.  Here's a funny story for you.  Got to see the Rad Onc yesterday after treatment.  My throat has been REALLY hurting so I asked him if was thrush or something related.  He said "no, just Rad  thorat" and I asked why it would should up so early as it was only the fifth treatment.  He blamed it on having the induction chemo.  He asked me when it was the worst and I said in the morning right after I have a couple fo glasses of cold water.  He said what happens when I drink coffee?  Nothing, I said, I don't feel it at all.  So, he said "don't drink anything coid and see what happenes.  Amazing but it has been nothing bu a low grade nuisance since then.  Who knew?

Joe Cortney

Dallas, TX

Strange. How small things become big accomplishments. Rick.

lts said:

Slice it anyway you want!

 

I’m 1/3 of the way there.

3.33333339% done.

11 of 33 complete.

Anyway, I feel good. No major side effects yet. I have put on 9 pounds since start date, guess I took "eat lots" a little to serious. They had a hard time snapping mask down today because my head is getting fat. Guess I'll lay off the protein shakes for now.

Luke

 

It's probably going to start getting a little rougher the next week or two, maybe you'll be lucky and not...

Keep up the excellent work and attitude, it'll take you far young LUKE..., LOL.

May the Force stay with you ~ John

jcortney said:

Luke, glad to hear the good start

I'm one behind (but .33333339%) ahead (I'm only doing 30).

 

Unfortunately, a couple of the "side effects" have popped up.  I have some sores at the back of my throat, my taste buds are doing the "everything burns" thing it does and my saliva is slightly off.  Other than those, all is well.  

 

Hang in there Buddy

 

Joe Cortney

Dallas, TX

Hi Joe,

Do you have a description of where you are being radiated? I understand the treatment is directed away as much as possible from salivary glands. Of course, everyone is different but was curious if you were told they were able to stay away from your glands.

And, great news on the lack of side effects so far. I am watching you day by day and hope you slide around them.

Don

donfoo said:

Location of radiation treatment

Hi Joe,

Do you have a description of where you are being radiated? I understand the treatment is directed away as much as possible from salivary glands. Of course, everyone is different but was curious if you were told they were able to stay away from your glands.

And, great news on the lack of side effects so far. I am watching you day by day and hope you slide around them.

Don

 

 

Don,

I had pretty extensive N2C disease (lymph nodes on both sides of neck effected) with SQ BOT Stage 1.  So, my Rads are both sides of my neck and that makes it hard to exclude any area.  The last few days I've even started using my feeding tube to get enough nutrition.  I didn't realize how little I was eating and am now really glad I got the tube.

Take care,

Joe Cortney

Dallas, TX

donfoo said:

going to ask about PEG

Thanks Joe,

After initially considering "toughing it out" without the PEG until I was forced, many positive comments here have me at least asking early about getting it in place early on. It seems only common sense and cheap insurance to have it in place so as soon as you feel your weight slip you can fill the funnel with supplementals.

Don,

I fought it hook, like and sinker but my Onc was insistant.  I had it put in about a week before I began Rads (after induction Chemo).  Right now, I can't see how I could have made it through without it; and I'm only on treatment number 11.  Don't get me wrong, I'll eat anything that will go down, problem is less and less is going down.

Good Luck,

Joe Cortney

Dallas, TX

donfoo said:

Just got the opposite advise today

Hi Joe,

I had my first visit with the radiology oncologist today and the topic of PEG came up. His feeling is to not put one in until/if you get to the point where you really need supplemental feeding. His rationale is it is highly important to keep the swallowing going on so that does not atrophy and also not become overly dependent on  feeding via PEG. 

On the way out of the offices, one of the oncology nurse who was around while the discussion took place, the doctor had since left, wispered that the nurses prefer patients get them earlier rather than later. Why have patients suffer too much trying to choke down food and drink and still lose weight to the point they PEG you. All the pain, suffering, and weight loss could be minimized with a PEG straightaway. I guess I will cross that bridge when it gets closer.

Don

But, GET THE TUBE.  From a guy that was so against it to the guy I am now (14 treatments in), I would NOT be maintaining my weight now without the tube.  I drink, and thus swallow a great deal and work on my exercises but can't stress enough how much the tube is saving my butt.

From the folks on this board that got the tube when they were in treatment, the experience was harder than those that had it befor RADS began.

Listen to the nurses, they are always on top of how to live through the treatment.

Joe Cortney

Dallas, TX

donfoo said:

To PEG or not, that is the question!

Yes, this does seem to be one of the more lively debates here. Now, I am back on the side to wait and see. There are merits to start treatment without it then if you start having trouble taking food/drink via the throat, use that as a green light to PEG up.

Moday, my visist with the MO is suggesting going with sequential induction chemo then standard chemo-radiation. So, my concern is now with the dreaded TPF (5-FU) the side effects may be bad enough that I should PEG up for that to make getting enough nutritioin to stay down. who knows? 

I don't know if the 5Fu was the worst.  I think it was the cisplatain.  (sp?).

Anyway, I didn't have my tube during this period and don't think I would have used it if I did.  Here is a tip that I learned through the induction.  You are going to feel bad, that's a given and the doc's are going to fill you with anti nausea drugs, that's a good thing.  I only got sick to my stomach one time.  Here's the deal though, and my doc's PA told me it happens a lot.  Your stomach feels like crap, and you feel like crap so you take everything you can think of to make it feel better but guess what, it dosen't get any better because they were hunger pangs.  I lost 11 lbs over a long holiday (no one to talk to) weekend thinking that my insides were going to come out.  Hunger pangs.  Started eating and everything was fine.  Food tased like crap, meat was the first to go, but my stomach settled right down.  Hunger pangs, seriously.

A bunch of us here went though Induction if you have any questions.

Joe Cortney

Dallas, TX

donfoo said:

Good strategy

I guess I was hoping 5-FU as that was only druing induction. They want me on Cisplatin for both TPF induction and for the chemoradiation rather than carboplatin or erbitux. If it is the cisplatin generating the nausea/vomit then I guess I'll be on the anti-nauseas for quite a long time, just the side effect of those are less worse than the symptom being treated.

Why did you not eat if the nausea was under control, because eating food tasted bad? This may be a good time for me to try to do the protein smoothies and such and try to jam the straw as far back without gagging. Guess one has to be creative, try different things, and do whatever it takes to get calories and liquids.

Thanks

Don

 

Was being rushed into treatment, had no idea what was happening or what I should do, was scared shi@less and just found this board.  As for food, remember this was how I reacted, your experience might be completely different.  I was always inducted on Monday and I was fine (no symptoms until day 3 when I would get really tired during the day the amount of food I was eating decreased without me realizing it.  I though I was eating my usual amounts but I wasn't.  This brought on stomach pains at 3:00 AM which I though was from the Chemo. By day 5 I was seriously undernourished and dehydrated and then it got worse, the trush hit and I had no idea what was going on.  This was on a Saturday first round of Chemo.  By Monday morning when I got in with an emergency appointment with my Doc's NP I was sure that I was going to die.  My wife and I were both in full panic mode.  Thrush diagnosed and started treatment, fluids infused and food at the cafeteria brought the pucker factor down to the "we can deal with  this stage".  My symptoms slowly subsided, we skipped the Incudction that week and it gave me a chance to heal my body.  By the next induction I was prepared.  Crap still happened but I was ready and didn't panic.  At the first sign (or even slight belief) that Thrush was coming I was on my meds.  I made sure I ate and drank at every opportunity and was on the scale constantly.  Still felt like crap and lost some weight but way better than round 1.  By round three I was just glad to get it over.  No cataclysmic events just not happy for the whole week.  The next week I had surgery to insert the tube.  I fought it all the way cause I thought I survived what my doc called (almost the worst chemo known to man) so I could survive the Rads.  Again IN MY CASE, I have and do need the tube.  I just can't get enough real food through my sore throat.  YOU'RE EXPERIENCE MAY VARY.

Good luck and keep asking questions.  I didn't have time before I started.

Joe Cortney