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Oral Cancer

Oral Cancer

Posted by Morgan1951 on Feb 10, 2019 10:11 am

I've just signed up to this site and I'm not sure if I'm in the right spot to look for other people's experience with this type of cancer. 
Thanks

Re: Oral Cancer

Posted by cancertakesflight on Feb 10, 2019 10:22 am

Morgan1951‍ Yes, you've come to the right spot. I"m so glad that you've found this site. There are lot of great people here who can help. You'll also find that although there will be experiences unique to your type of cancer, there will also be other elements of the cancer experience that are common, regardless of the cancer type. JamesT‍ and Aly‍ have posted on some previous posts about Oral Cancer in the past; maybe they can help you find the information that you need.

Welcome!

cancertakesflight

Re: Oral Cancer

Posted by JamesT on Feb 10, 2019 1:18 pm

Hello Morgan1951‍ 

This is a great site to hear about other peoples experiences with what you are going through.

I would suggest that you look under the heading "forums" at the top, then choose cancers types and to the right scroll down to head and neck.  I'll send you a note from there so that you see.

Sincerely,


James

Re: Oral Cancer

Posted by Aly on Feb 13, 2019 12:54 am

Hey Morgan1951‍ ,

Welcome to CancerConnection. I unfortunately do not have experience with oral cancer, JamesT‍, however; is the man with the experience.

If you need suggestions for soft or liquid foods, or how to add nutritional value to meals - I can definitely help with that.

If you have any questions, please let me know 😊

Re: Oral Cancer

Posted by Morgan1951 on Feb 15, 2019 6:13 pm

Thanks Aly. I definately need help with soft food recipes and keeping my calories and protein up. 
I'm a very thin woman to start with, who has been under weight for years - probably by 20 - 25lbs. I just can seem to gain weight.
I was at the dietician this week, and I've lost four pounds!

I was in a lot of mouth pain all last week and most of this, but I've now got pain medication which is really helping.

I just finished my third week of radiation - three more to go!

Morgan

Re: Oral Cancer

Posted by ashcon on Feb 16, 2019 11:19 am

Hi Morgan1951‍ 

Congratulations on reaching the halfway mark of your radiation!
You may want to join the group, Eating Well When You Have Cancer, if you haven't done so already.  There are some great discussions and tips from others who have experience with coming up with ideas for soft food recipes, while maintaining caloric and protein intake!

Wishing you health, wellness, and happiness.

Re: Oral Cancer

Posted by Aly on Feb 17, 2019 1:04 am

Hey Morgan1951‍ .

Three more to go? That's awesome!

I'll leave this link to my post on soft / liquid and extra calorie foods for you. I hope it helps!!

Re: Oral Cancer

Posted by JamesT on Feb 17, 2019 1:22 am

Congrats Morgan1951‍ on completing your 3rd week.

How is your pain?  If you haven't heard of it Resource is a great drink that has just under 500 calories per serving...I think it's 477 or so.

What pain medication do they have you on?

Sincerely,


James

 

Re: Oral Cancer

Posted by Morgan1951 on Feb 17, 2019 10:09 am

Thanks James, I will look for Resource, but I don't think I've seen it at the drug store. Where else might I look for it?
Right now I'm drinking Ensure Calorie+ and making shakes with it.
The pain meds are morphin 1 - low dose.
I'll explore the eating well group that was supplied as a link too.

I appreciate everyone's comments and offer of help.
Morgan

Re: Oral Cancer

Posted by Brighty on Feb 17, 2019 11:38 am

Morgan1951‍  hi.  My fiance was on resource.   We used to get it for free.  The dietician  at the oncology  dept.. Had tons of them so she gave us samples.   Check the dietician and see if they have any.   

Re: Oral Cancer

Posted by JamesT on Feb 17, 2019 1:06 pm

Hello Morgan1951‍ 

I used to buy it from Shoppers Drug Mart by the case.

I used to ask for it at the prescription counter....and I used to buy it on Thursday's and enjoy a 20% discount.

A suggestion for your pain meds....make sure you keep track of how many pills your have going into a weekend.  I have been caught before, that as the weeks went on with radiation and the pain increased I found I didn't have enough pills to get through the weekend...yikes!!

Two suggestions on this for you....make sure if you are running low, to ask to see your pain doctor on Friday and get a prescription.  And the other suggestion is to make sure you fill one of the prescriptions at the hospital pharmacy....which in my case was a Pharmasave.  Then if something happens and you run out on a weekend, then you can call the doctor on call and they can write a refill for you at the pharmacy at the hospital...

Some some tips that I got caught with and I wouldn't want to see anyone else get caught without enough pain meds on a weekend.

Also at the pharmasave they had these medicated lollipops that were FANTASTIC.....I went through quite a few of them as they provide instant relief and they were a god send to touch up against any particularly painful spots...in my case...i had an awful, very nasty cancer sore on my tongue, right from the beginning that was soooo painful.

Hope this all helps....

Sincerely,


James

Re: Oral Cancer

Posted by Morgan1951 on Feb 17, 2019 6:33 pm

Thanks for the update on where to purchase Resource - I'll check it out and discuss with the dietician.
I have swabs that I use for my sores - medicated mouth wash that I apply and it really helps
I have lots of pain meds right now, but I'll be sure that I don't run out.
I have a really bad sore on the inside of my lower lip - it sticks to everything - glasses, cups, etc. I swab that all the time. Medicated mouth cream is helping too. I use at night when I go to bed.
I'm really hoping next week goes quickly with nothing worse happening to the inside of my mouth..... always hopeful.
Morgan

Re: Oral Cancer

Posted by Morgan1951 on Feb 22, 2019 7:43 pm

JamesT:
Hello Morgan1951‍ 

I used to buy it from Shoppers Drug Mart by the case.

I used to ask for it at the prescription counter....and I used to buy it on Thursday's and enjoy a 20% discount.

A suggestion for your pain meds....make sure you keep track of how many pills your have going into a weekend.  I have been caught before, that as the weeks went on with radiation and the pain increased I found I didn't have enough pills to get through the weekend...yikes!!

Two suggestions on this for you....make sure if you are running low, to ask to see your pain doctor on Friday and get a prescription.  And the other suggestion is to make sure you fill one of the prescriptions at the hospital pharmacy....which in my case was a Pharmasave.  Then if something happens and you run out on a weekend, then you can call the doctor on call and they can write a refill for you at the pharmacy at the hospital...

Some some tips that I got caught with and I wouldn't want to see anyone else get caught without enough pain meds on a weekend.

Also at the pharmasave they had these medicated lollipops that were FANTASTIC.....I went through quite a few of them as they provide instant relief and they were a god send to touch up against any particularly painful spots...in my case...i had an awful, very nasty cancer sore on my tongue, right from the beginning that was soooo painful.

Hope this all helps....

Sincerely,


James

Hi James,
What are the medicated lolly pops called? I would like to look into this as well.
Thanks
Morgan

Re: Oral Cancer

Posted by JamesT on Feb 22, 2019 11:52 pm

Hello Morgan1951‍ 

Not sure...but there were at the pharmacy at the hospital.  In our case it was a pharmasave.

And they were GREAT.  And if I remember there was a little deal if you bought 10 at a time.  

And you want to buy enough. When I was going to the hospital everyday, I would just go and buy a few every day, until a day where they were sold out, and they are not making them again for another 3 or 4 days.  You don't want that to happen.

I hope they have it for you.

Let us know.

Sincerely,


James

Re: Oral Cancer

Posted by Morgan1951 on Feb 24, 2019 9:27 pm

Thanks JamesT‍ 
I'll ask the nurse tomorrow if she's heard of them.

I'm starting week five of treatment.
Mouth is still sore and I'm getting radiation burns now on my neck which are very tender. My face is a mess with radiation burns - red, dry and very tender. I'm putting on lots of glaxall cream on my neck for relief.

Did you get a sore nose? My nostrils feel swollen - both of them. I'll chat with the nurse about this tomorrow.....

Always something new popping up it seems.

Cheers,
Morgan

Re: Oral Cancer

Posted by JamesT on Feb 27, 2019 1:10 am

Hello Morgan1951‍ 

Your getting there on your treatments.

Time to buckle down and get through it.

I do remember there were a few weeks that my neck looked the worst, and I think it was right around the 5 week mark.  I do remember it wasn't at the end.

The cleaning of your neck and applying glaxall lots during the day does make a difference.

No, I never did get a sore nose.  I would imagine that would be quite painful.

Where do you live Morgan?

Sincerely,


James

Re: Oral Cancer

Posted by Morgan1951 on Feb 27, 2019 6:12 pm

Hi James,
This is week 5 for me! 
Tomorrow is a busy day - 2 treatments, dietician and then the doctor at the end of the day. When all the appointments are spread out during the day, I find it tiring, but I manage to rest up for this type of day. I basically did nothing all day except sit in silence, which I don't mind at all.

Nose is still sore - I've had a couple of nose bleeds in the past two days. Nurse suggested putting the Galaxall cream in my nose using a q-tip. I've tried it when I go to bed, and it seems to help. I use the cream on my neck regularily throughout the day - it so dry and tender to even touch. But, I keep marching forward.

I live in New Brunswick - we've been in the deep freeze for the past number of days with crazy wind. Not too many calendar days until spring!!
Stay well.
Morgan
 

Re: Oral Cancer

Posted by JamesT on Mar 2, 2019 4:59 pm

Hello Morgan,

thanks for the update.

Do you have a humidifier?  That is something I have been using daily since the beginning.

Spring has to happen soon.  This past week we had snow and cold, and that's typically unusual for late February.

Being tired after a busy day is the norm.

I find that if I have to stay up late or for those days if I have to get up early, it really throws me off.  I need my sleep. and that's with waking up multiple times during a night...seems to be the new norm, so I have to sleep in a bit to get the rest I need.

Small price to pay though...not complaining.

Hope you have a good weekend.  The worst will be over soon for your neck.

Sincerely,


James