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One down 32 to go

lts's picture
lts
Posts: 75
Joined: Nov 2012

First rad tx done, 32 to go. The folks and Cancer Ctr are all so nice. I,m gonna ask for strength for all of us.

Luke

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

May the Force be with you Luke....

LOL, sorry, I couldn't resist...

Enjoy the ease of the first few days, it goes down hill from here for a month or so. But the end result is well worth the sacrifice.

Best,
John

katenorwood
Posts: 1800
Joined: May 2012

Luke,
I am so happy things are moving forward for you ! Keep that goal line in your sites, and know you have a pretty good rooting system here ! And was that a 3 stooges reference you made up under Meagans post ? They are funny as all get out too ! Wishing you a speedy bus ride with few bumps in the road my friend ! Katie

lts's picture
lts
Posts: 75
Joined: Nov 2012

First week in rear view and no real side effects yet. Weird taste in mouth and warmth on skin, nothing bad though.

Yes Katie, that was a stooges reference. I was trying to be funney with Johns comment but the order of posts kind of robs the humor.

Luke

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

Got a really bad sore throat today. Pretty sure it's thrush (or some other nasty like it) and not from the Rads. But, one week in the rearview mirror.

Hang in there buddy, we'll get through this.

Joe Cortney
Dallas, TX

phrannie51's picture
phrannie51
Posts: 3594
Joined: Mar 2012

be great partners on this "trip of a lifetime"....That's what I love about this site! I gained so much strength having fellow bus riders who were in or nearly in the same stage of treatment as I was.....and having all those who'd completed the trip waving and encouraging us that we would most certainly make it to the end of the tunnel.

Joe...thrush is a pain in the rear....I still get it when I work graveyard shifts, and I'm 4 months out of all treatment, and 6 months out from rads. Diflucan (fluconazole) is what worked best for me...it works on thrush from the inside out, rather than Nystatin that is a swish.

p

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

"Joe...thrush is a pain in the rear....I still get it when I work graveyard shifts, and I'm 4 months out of all treatment, and 6 months out from rads. Diflucan (fluconazole) is what worked best for me...it works on thrush from the inside out, rather than Nystatin that is a swish."

Phrannie,

I got right on the Fluconazole as soon as I suspected it (Friday night). If it is indeed thrush, I should start to see some relief today/tomorrow (based on previous attacks). If it's throat sores this early, well that's not a happy thought. Nystatin is a non-starter with me, just the smell of it sets me off.

Don't know where home is for you but North Texas might very well have a white Christmas.

Where ever each and every one of you are, please be safe and grab what happiness you can.

Joe Cortney
Dallas, TX

CivilMatt's picture
CivilMatt
Posts: 2802
Joined: May 2012

Luke,

Or is it an uphill climb? My techs were great, they become more important as the time goes by. Good luck, smooth sailing (or should I say smooth zapping).

Best,

Matt

luvofmylif
Posts: 344
Joined: Sep 2012

I know how you feel...it was not too long ago I had the same feeling when my husband completed his first radiation and chemo. It was like starting on a journey of the unknown but day by day we made it through to the other side and you will to.

We checked them off on the calendar every day when we got home. Never lose sight of the goal...cancer free.

Joan

meaganb's picture
meaganb
Posts: 226
Joined: May 2012

It feels good to get started, doesn't it? I felt pretty good the first few weeks and I'm sure you'll probably get a few days off next week so try to enjoy your family this Christmas! Keep us updated Luke!

lts's picture
lts
Posts: 75
Joined: Nov 2012

I am hoping to get the 31st off and take the kids up north and play in the snow. I have not asked but I hope the doc says yes.

Good to hear from you Megan!!!

Regarding the star wars reference, I have never heard that before, that is hilarious. ; )

O, wise guy huh? Yuk, yuk, yuk.

Luke

josh r.
Posts: 176
Joined: Oct 2010

Hi Luke,
I remember vividly how I anxiously awaited for the neddle to infuse those thousands of solders to kick the a-- of the intruders. I kept that thought and actually pictured the battle going on within my body for all those weeks that turned to months and ended in victory called NED! The battle started on July 28, 1991 and the graditude and vigilence continues to this beautiful day. Even, or maybe especially, on the grey days picture victory. God bless and Happy Holidays, josh r.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I'm so happy you like the techs and the facility, that will be huge later on when things are not so fun. The next few weeks should be fine and then just a bit of "ick" and it'll be done.
Where are you having treatment? I'm pretty sure the onc will let you have the 31st off, just ask him tomorrow maybe and see what he says.
I'll be thinking of you and praying for easy treatments.
Take care,
Billie

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

The making of the mask, waiting, and that first treatment are real hurdles. Very soon, all the hurdles will be in your past and you will be giving advice to the newcomers to this board. Rick.

donfoo's picture
donfoo
Posts: 1143
Joined: Dec 2012

Keep us updated as to how you feel, what you are eating and drinking, and your pain management regime. From those with lots of experience, it seems like the first part is pretty smooth going. Wish you well.
Don

Vee1
Posts: 59
Joined: Nov 2012

Hi,

My dad started his rad treatment also on Monday. He is due for 33 as well. We are trying to establish a bit of a routine. Drink a 530 calorie Boost with cream and whipping cream after breakfast...drink aloe in the car to and from, have a xanax about 40 minutes prior to treatment, return home and slather on the aquaphor then have lunch. As long as he can do that we will.

Oh, he also takes a marker and crosses off one more day.

Then it's on to Plan B...C....D....E....etc.

Wishing and praying for the best for you.
-V

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

I'm only doing 30 (60 gy) and missed one day this week due to the machine crapping out so I'm down to 27. Beginning to feel a twinge in my throat. My doc said he could see it getting red already. I'm hopeful that I'll make it though the holiday without much of a problem.

Good luck to my starting buddies.

Joe Cortney
Dallas, TX

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

My husband has 32 rads and 6 chemos to go. It's so nice to have people in the same stage of treatment and also the amazing people/cyber family who have been there cheering you on and helping you through. My husband is just feeling very "medicine head" and a bit more tired.....just the beginning. His PEG is getting scheduled for after the holidays (thank you kind MD). Keep us posted. I am rooting for all of us to get to NED.

Happy Holidays to each and every one of you. May you look around and see the good that is already here.

Kirsten

Vee1
Posts: 59
Joined: Nov 2012

How is it going?  Dad has pain at roof of mouth and swallowing.  Started more exercises for neck and mouth.  And, started Miracle Mouthwash yesterday.

Fatigue is present and swelling of lower lip...

I was hoping we'd get to the 3rd week before this, but oh, well....

Please keep posting, ITS and Vermontgirl...

-V

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Like the movie...

Samething day, after day, after day....

Keep pressing on, it'll get through and back to business soon...

Best ~ John

lts's picture
lts
Posts: 75
Joined: Nov 2012

On my way to #8. Appointment at 9:37. Don't be late.

 

Luke

Vee1
Posts: 59
Joined: Nov 2012

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

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

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

Vee1
Posts: 59
Joined: Nov 2012

Sometimes the simplest solutions are the ones that work best!  The "One Down Club"  has great advice and I appreciate it all!

-V

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Strange. How small things become big accomplishments. Rick.

lts's picture
lts
Posts: 75
Joined: Nov 2012

 

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

 

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

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's picture
jcortney
Posts: 406
Joined: Sep 2012

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

donfoo's picture
donfoo
Posts: 1143
Joined: Dec 2012

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

 

 

Vee1
Posts: 59
Joined: Nov 2012

Dad was so looking forward to the 11 down 22 to go, but like I wrote in the new thread (had to stop radiation...weeping blood in mouth) Dad had to stop for one week.

 

He had burning, lack of taste, and this weeping blood outside of the treatment area that bothered the rad-onc.  So, hang in there.  We are following your progress.

Best,

V

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

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's picture
donfoo
Posts: 1143
Joined: Dec 2012

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.

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

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's picture
donfoo
Posts: 1143
Joined: Dec 2012

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

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

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

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

This topic has been one of the more heated debates on CSN H&N than nearly any other I can think of.

I too am one that didn't have the PEG, didn't refuse it, it just wasn't prescribed.

I was made aware, and knew if it ever came to the point of absolutely having to have it to survive, the option was there.

In my case, I never came close to ever not taking in calories or hydration... I'm not tougher than anyone else, it just never happened.

But I'm also kind of one of those types that think if you have something that makes it easier for you, you're going to use it whether you actually need it or not.

Anyways, it's a personal decision (unless the MD's order it)...

I just can never get to a point that feels it should be mandatory... Myself and too many others made it through just fine without.

But on that same note, some on here swear by it and insist they would have not made it without. So in their case, it was a good thing and it was just one less thing for them to have to deal with along with all of the rest.

Food for thought...

John

 

lts's picture
lts
Posts: 75
Joined: Nov 2012

My doc said in the begining that he would not be giving me one. He had said because they were only going to radiate on side of neck( just above jaw line and down to middle of neck) I shouldn't need one. The salivary glands on left that are not effected should compensante somewhat for lack of saliva.

Well, I am heading to number 15of33 today and I am feeling some side effects(soar throat, drymouth, fatigue and no taste, which I think is the worst). The Doc said it will become difficult but toward the end but stressed I shouldn't need pic line.

The doctors that do this every day have a good feeling who will or will not need one of these for nutrition. If you got one use it, if not, eat while you can. Switch to protien drinks when you need to and if that gets to hard talk to your doctor.

If I hear one common thread, it's eat and drink plenty, and personally, I plan on doing just that. Cardboard and salt water anyone?

Luke

donfoo's picture
donfoo
Posts: 1143
Joined: Dec 2012

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? Undecided

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

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's picture
donfoo
Posts: 1143
Joined: Dec 2012

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

 

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

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

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