Hi All!
This is an amazing forum! I'm so glad I came across it in searching for answers or helpful suggestions.

My mom has been diagnosed with posterier pharyngeal cancer. It is squamous cell and we will be seeing the tumor board on Friday to get more info and treatment options. We joke that mom was so considerate as to find this while I and my sister in law are off school for the summer (teacher and an instructional aide). I also have other siblings who will all be working together as caregivers.
Mom started this with difficulty swallowing for a few months and a sore throat. Primary doctor gave her antibiotics a couple times but nothing got better.

She was referred to one ENT who basically said she was old and had outlived her body and just wanted to put her on a feeding tube without any reason for why she was having trouble. Needless to say, she found another doctor at a teaching hospital who was determined to find the problem. Under a direct laryngoscopy he found the cancer. We don't know the stage yet but should know by Friday.
Her problem has been adjusting to the feeding tube. She feels yucky and like her heart is racing near the end of the amount (we are using a pump as the bolus feed was awful for her.) She's only been able to get maybe 2 cans of Two Cal in perday over 4 feedings. They had been having us dilute it by one can of formula and 200 cc of water but she needs more calories so we are trying less water during the feeding and then give her water between feedings. She's not feeling great today and thinks it's due to the less dilutes formula, but I think she's due to the exertion of going to a consult with the doctor yesterday and just trying the get her strength back.

Mom has been a very active lady up until this was diagnosed.
She's an active 77 year old and doesn't want to feel yucky.
The other part that bothers her is the thick mucous any time she tries to take anything by mouth. Does anyone have suggestions for that?

Hi LaurieA: Welcome, although I hate you have to be here. No. 1, I think you should take your Mom back to that first ENT and walk up to him and let her smack the crap out of him. What nerve! I'm glad you found a better one and have started on the journey to recovery. It's not going to be easy, but can be done. Your Mom will just have to give it all she can because others who are a lot older and weaker than she, have done it and she can too. She is lucky to have you and your sister-in-law - a gift from God. If she can manage to get those calories in her, and also try to swallow by mouth, she can do it. The thick mucus is horrible and her doctor should be able to give her something to help, maybe Magic mouthwash or Miracle mouthwash. I tried everything and not sure I ever found something that really worked, except time. Others will join in and offer their suggestions when they read your post. I'll be watching for your post after Friday and learn more about her treatment - just tell her she CAN do it and others have. I will pray for her and you and sis-in-law too. You can go in the Search bar (top right) and put in "thick mucus" and see what others have done. Hugs, julieann

Hi ! Hope you're At a ccc - it is the best place to be seen for cancer. If she's getting pump feeds maybe try running them very slowly over night might be easier while she sleeps? As for the mucous, I generally recommend a water pik on the lowes setting to clean out the goup!

Sorry you have to be here ! good luck Friday!

Welcome to OCF! Glad you have found this site as it will be very helpful in your mothers battle for info and support.

As far as her feedings go, what about a feeding pump? That will probably solve the problem of her getting enough nutrition and the upset stomach. I have used 2 Cal and it is thick so you need to add water. There are 3 ways to do a feeding. First is the push method where the formula is pushed in thru a syringe. It is the fastest way but also can bother the patients stomach. Next is gravity where either in a feeding bag or the syringe the formula is poured into it and let run into the feeding tube. Depending how high you hold the syringe or bag is how fast it flows. The third is the only way I am able to use my feeding tube, its with the feeding pump. This is the easiest to tolerate. Hook up to the pump in the evening and let it run overnight. Start out with 3 cans of formula and about 2 cans of water running slowly say 60 cc per hour. After about a week or 2 if she can tolerate that you can move up the speed to 80, then after a few days go to 90 etc until you get to something quicker like 150. This will help her to get enough fluids and calories. Nutrition is the key to how she feels and how she will do getting thru this. Every single day she must get 2500+ calories daily and 48 oz of water. No compromises or trying to make it up the next day, once you get behind its not possible to catch up. Also make sure she is propped up while doing her feedings, laying down can cause her to aspirate. So if using the pump overnight then have her sleep on a couple pillows and also use something to prop up the head of her bed. The head of her bed should be about a foot higher than the foot so maybe try using bricks or cinder blocks. The 2 easiest ways to help a patient tolerate a formula are to water it down and to slow it down which is why the pump works so good. Its easily gotten from a medical supply company thru a doctors prescription.

Best wishes with everything!

Thank you all for your quick reply on this holiday! I convinced her to go out for a little while to my sister's and that perked her up.
I just told her what JuliAnn wrote about the first doctor and she loved it! I can see her doing it too! All of her 5 foot 1, 102 pounds back handing him! Lol!
She is on a pump after not doing well with syringe feeding in the hospital. The home nurse will be back tomorrow and we've asked her to show us how to do the overnight food.
She said she has heard about the magic mouthwash and we'll check on that.
She made me go back to the 200cc of water to dilute the can as she didn't feel well after feeding the first two times today. So hopefully the overnight will work for her.
I will update on Friday after we get info. Thank you being here for everyone going through this!!

The feeding pump will solve your mothers nausea problem with the formula. It will allow you to water it down and also slow it down which are the 2 most common reasons for stomach discomfort. Also after a feeding, she should sit still for at least a half hour to allow her stomach to settle. Just imagine drinking a 32oz thick milkshake. Thats kinda what your stomach feels like after doing the push method of feedings, bloated and overly full. Ive been using a feeding tube for almost all of my 5 years of dealing with OC and its after effects so I know many tricks. There is another long term tube feeder on the forum but unfortunately he is dealing with the DC area power outage and will be stuck without power for a few more days. Im sure once he gets electric again he will come along and give some other tips too.

Best wishes to you and your mom. She sounds like she has a great attitude and is full of spunk which will help get her thru all of this. Sometimes the patient and caregiver need to speak up to get action.

Thanks Christine, Cheryl, and JuliAnn!
Here's another question and I searched and probably didn't have the correct search terms to find info.
Mom sometimes feels her stomach is "sour" and can't complete a feeding. We've realized that on these days we see yellow, gross, stuff in her valve. I guess it's stomach acid or bile? The nurse was able to extract some the other day and she felt better. The other day we had about 10cc of it, and this morning a little less than that. Once I get it out she feels better and today was able to go back to hopefully finish the formula (she's still on the pump.)
We'll bring it up to the nurse again but is there some reason this is happening especially at the morning meal? Is there any way to stop this from happening?

I wonder if she's not digesting the formula properly - it sounds like its not clearing her stomach or it's sitting too long.l ask them to change her to a non milk based formula, and make sure the tube is in correctly. Overnight feeds can be put on super slow so that should help wi the digestion process. Take care.

There are hundreds of formulas on the market. Two Cal is supposed to be easier on the stomach. I had problems with my formulas and went thru several before I was given that type which worked for me. It is very common when beginning tube feedings for the patient to have some digestion issues. Many need to add some fiber like benefiber.

Another thing if she has a regular 'peg' type feeding tube you should be doing the pulling back to check for residuals at least once daily. From what I understand this needs to be put back into the stomach and not discarded. If your mother would have a J/G tube (my current type), NEVER, EVER pull back for residuals as it could dislodge the tube placement. Most patients have a regular peg tube, but please check with the nurse to be certain if you dont already know.

Hi, Laurie!

It seems like you're getting some good advice here!

I'm just trying to imaging your petite little mother giving that first doctor a good slap across his head! Lol! Grr!

I'm so glad that your Mom now has a better doctor, determined to take good care of her. She is indeed lucky to have you and your SIL by her side. Yes, the timing is good, too! Just remember to take care of yourself, as well. Caregivers have a very important and challenging job to say the least. We patients would be lost without you!

Is your Mom at a Comprehensive Cancer Center (CCC)? I know that you live in CA and it's such a huge state, but here is a link to the National Cancer Institute's list of certified centers. They are where you Mom should be getting care. Oropharyngeal cancer is a beast that moves quickly and you need to make sure that she is getting "the best of the best" in order to give her the best fighting chance.

Comprehensive Cancer Centers

I wish you the best of luck in the coming times. Please keep coming back here for support and keep us posted as you are able!

With great care,
Kerri