Starting Week three

ocmark

Hello everyone,

I just wanted to give an update. I'm about to start week three of Cetuximab and radiation post tongue and lymph node cancer.

It looks like it's starting to get interesting. I was doing really well until a couple days ago when the mouth sores showed up in a major way. One spot on the roof of my mouth has been extremely painful for a coupoe of days. Hoever, I get the weekends off, so I've been swishing the baking soda cocktail at every opportunity and it seems to have improved today. The radiation starts again tomorrow (Monday) so I'm sure it will get worse again. On the Cetuximab front, my nose is completely broken out and crusted over. It looks quite charming at this point.

One concerning development is that I feel kind of brain-dead the last few days. I'm having trouble concentrating and I'm feeling brain fatigue. Is this typical?

Also, I was wondering if anyone has had their program modified because a certain area was getting too much damage from the radiation? I can't believe the roof of my mouth is going to keep getting hit every day for the next four weeks. Do sores ever get better as you go along, or does every sore spot just keep getting worse?

 

thanks, all.

Mark

Barbaraek

Mouth sores

Hello Mark. I'm sorry you're starting to experience some of the more unpleasant side effects of radiation. As far as mouth sores go - put "mucositis" in the search bar for messages and you will get lots of information. Your swish solution should always be at hand. If it becomes too painful try a mix of water and L-glutamine powder which you can find in most health stores such as GNC, or online. Also there is a product to swish and spit out called GelClair which may be helpful. Good luck.. Those mouth sores were the worst part for my husband. He is 13 weeks post radiation and still has a few raw spots. If the outside of you neck burns use Aquaphor or for weepy type sores, Silvadene cream. It's wonderful.

its not unusual yo feel fatigued or fuzzy during treatment. My husband had trouble concentrating, focusing and feeling alert. It is better now that chemo radiation is in the rear view mirror. Keep checking those treatments off - they WILL end!

Barbara

KB56

Week 3

Mark, I had basically the same treatment as you and week 3 is when you really start to feel it.   The doctor should be giving you something for the neck burns now and he/she will step it up with something stronger before you finish.  Unfortunately the acne/ skin rash from the chemo will get worse before it gets better.  It was only on my chest, back and face but my face looked rough.  The good news is it should pretty much clear up before you finish treatment.  Get a water based moisturizer and lather up pretty good and it seems to help.  

On on the garglin, try gargling with warm salt water and then rinsing with cool baking soda.   I kept and container of bakiNg soda in the fridge so it was easy to use and ready to go.     You can do this as often as you want and it is soothing.   After a few more weeks of radiation it can really make it feel better.  

Good luck.   You can do this so just take it one day at atone, stay hydrated and manage the symptoms.    

All le the best,

Keith

ocmark

Barbaraek said:

Mouth sores

Hello Mark. I'm sorry you're starting to experience some of the more unpleasant side effects of radiation. As far as mouth sores go - put "mucositis" in the search bar for messages and you will get lots of information. Your swish solution should always be at hand. If it becomes too painful try a mix of water and L-glutamine powder which you can find in most health stores such as GNC, or online. Also there is a product to swish and spit out called GelClair which may be helpful. Good luck.. Those mouth sores were the worst part for my husband. He is 13 weeks post radiation and still has a few raw spots. If the outside of you neck burns use Aquaphor or for weepy type sores, Silvadene cream. It's wonderful.

its not unusual yo feel fatigued or fuzzy during treatment. My husband had trouble concentrating, focusing and feeling alert. It is better now that chemo radiation is in the rear view mirror. Keep checking those treatments off - they WILL end!

Barbara

Mouth Sores

Thanks, Barbara,

Thanks for the encouraging words. I have been using the Glutimine, but this one sore on the roof of my mouth is so painful, I'm having a hrad time finding relief. It just feels totally raw.. I have some "magic mouthwash" but I hate it. I may have to start using it for this. If it ween't for this one spot, everything else would be manageable.  I'll look into the Gelclair.

 

ocmark

KB56 said:

Week 3

Mark, I had basically the same treatment as you and week 3 is when you really start to feel it.   The doctor should be giving you something for the neck burns now and he/she will step it up with something stronger before you finish.  Unfortunately the acne/ skin rash from the chemo will get worse before it gets better.  It was only on my chest, back and face but my face looked rough.  The good news is it should pretty much clear up before you finish treatment.  Get a water based moisturizer and lather up pretty good and it seems to help.  

On on the garglin, try gargling with warm salt water and then rinsing with cool baking soda.   I kept and container of bakiNg soda in the fridge so it was easy to use and ready to go.     You can do this as often as you want and it is soothing.   After a few more weeks of radiation it can really make it feel better.  

Good luck.   You can do this so just take it one day at atone, stay hydrated and manage the symptoms.    

All le the best,

Keith

Sore mouth

Hi Keith

Thanks for the interesting advice. I currently have one mouth rinse I make up that has both baking soda, salt and some Biotene mouthwash in it. I'll try splitting it up, as you suggest. So far, I have no trouble eating and swallowing, but the pain from this one area is so horrendous that it makes eating difficult. It reminds me of when you eat hot pizza and the cheese sticks to the roof of your mouth and burns the skin off.

 

Thanks again,

Mark

Kent Cass

Possible help

During week #2 the sores in the mouth, which eventually even made it to the outside around my lips, began. I had one particular problem area on the right side of my mouth, and my Rad Dr prescribed Hurricane for it. This Hurricane, I've been lead to believe, is also the stuff tattoo artists use to deaden the skin before they do their thing; however, this prescription Hurricane must be a bit different, because swallowing it is not an issue. Did help a lot with that particular sore. I had many sores, but just lived with them and used Magic Mouthwash and Biotine. Like Barbara noted, the Aquaphor was all I used for the skin burns- they had baskets filled with it for us to just take if we needed it where I went through the Rads. And, no- they did not alter my 20 rads/session due to the sores. They're only temporary, and we're expected to just treat them as best as possible and live with them. Those sores are a secondary issue= the only priority that matters is the killing of C, and please do yourself a favor and think about that= Come what may.

As for the brain, "Chemo brain" is more typically noted for post-tx. Might just be the enormity of what you're going thru, which includes sleep being irregular, the drugs, etc. Between the Morph and Hydrocodone, my brain was, well...it's all just part of the fight I was in with big ol' C.

kcass

ocmark

Kent Cass said:

Possible help

During week #2 the sores in the mouth, which eventually even made it to the outside around my lips, began. I had one particular problem area on the right side of my mouth, and my Rad Dr prescribed Hurricane for it. This Hurricane, I've been lead to believe, is also the stuff tattoo artists use to deaden the skin before they do their thing; however, this prescription Hurricane must be a bit different, because swallowing it is not an issue. Did help a lot with that particular sore. I had many sores, but just lived with them and used Magic Mouthwash and Biotine. Like Barbara noted, the Aquaphor was all I used for the skin burns- they had baskets filled with it for us to just take if we needed it where I went through the Rads. And, no- they did not alter my 20 rads/session due to the sores. They're only temporary, and we're expected to just treat them as best as possible and live with them. Those sores are a secondary issue= the only priority that matters is the killing of C, and please do yourself a favor and think about that= Come what may.

As for the brain, "Chemo brain" is more typically noted for post-tx. Might just be the enormity of what you're going thru, which includes sleep being irregular, the drugs, etc. Between the Morph and Hydrocodone, my brain was, well...it's all just part of the fight I was in with big ol' C.

kcass

Sores and burns

I'll ask my doctor about the aquaphor and Hurricane. Nothing has been sead about these so far.

Many thanks.

MrsBD

Week 3

It's a pretty miserable time, but the side effects you mentioned are temporary. My oncologist prescribed an antibiotic for the cetuximab rash which really helped. Dabbing on some oatmeal water took care of the itchy areas and helped heal the crusting. Mucositis is one of the trickier side effects to manage. Everyone is unique, so just keep trying the different suggestions until you find the one that works for you. Chemo brain is a real thing, but your issues could also be related to the damaging effect of radiation on your thyroid. It's  a little soon, but it could be the problem. Mine died about 8 months afterward and one of the main symptoms was inability to focus. I'm glad you are doing well otherwise. Keep eat, drinking, and thinking positively!

Noellesmom

I may have missed

Anything you said about pain meds.  If you don't have something, ask.  If you do, ask for more.

At least get it and have it on hand.

wmc

When you have a bad day, just take one day at a time, and only today matters. Yesterday is over, and tomorrow is not here yet. Be strong and Never Give Up.........

Bill

hwt

wmc said:

When you have a bad day, just take one day at a time, and only today matters. Yesterday is over, and tomorrow is not here yet. Be strong and Never Give Up.........

Bill

Magic mouthwash

Clarify if you have swish and spit or swish and swallow. My sores were on lips and I used Aquaphor. Know it is miserable.