BJMpittsburgh...
oh gosh.... thank you.... for reminding me of this.. you know I am a RN and yet... I did not even think of this. THANK YOU. We had our MO apt today and talked about better pain management, and we also had some changes to regimen of infusion suite antiemetics and med timing. Now have a fentayl patch.
We also realized that round the clock meds to prevent constipation is necessary..
am so hopeful that we can now get ahead of this if we have mouth pain, constipation and intake in a better regimen.

This is a set back but .... hopefully all the suggestion and new plans will help.

thank you soo sooo much.
be well... we appreciate your input and survivor support.

BJMPittsburgh..
I do have a question...
for water intake.. do you also recommend that via PEG tube as well? the reason I ask is he has "burning" that burn like a ^&*
on the roof of his mouth with any intake.. even water.
I am concerned how much worse this will get and how challenging that will make water intake. He is very aware of the importance of ongoing swallowing, but with this development, I am not sure how much he will get in that way. He uses baking soda/NACL rinse regularly about 10x/day and
He absolutely hated the lidocaine. He is using orasmooth which he finds very helpful.

Talk with your husbands physician, nurses and/or dietitian during his next rad day. Tell them he needs a feeding pump ASAP! Its a piece of cake to get this from a medical supply company, but it does require a prescription.. Probably the same one that supplies his formula. Explain the push and gravity methods arent working very well and he needs help to get feedings while he is sleeping. If your husband has a case manager to help coordinate everything, maybe they can be of some help in getting a pump delivered to your home. A visiting nurse should come out when the pump arrives to teach you how to operate it. The pump is fairly simple, most common one is the kangaroo joey pump. Its small and can be put in a special backpack (usually provided) so he can do feedings while on the go or even while traveling back and forth to his treatments.

If you havent already checked with the American Cancer Society (ACS), I suggest calling them for some help. The ACS has a great resource to help patients get back and forth to their treatments. Even if you can get a volunteer driver one day a week, that would be a nice break for you. The drivers are all cancer patients or caregivers. Its a very good program, I volunteer and help drive patients once in a while. The ACS also has some financial aid programs to help cover prescriptions or transportation costs up to $300. They are available 24/7 so give them a call anytime you have a few minutes.

I suggest your husband taking small sips of water thru out the day. He does NOT want to end up with swallowing problems after everything he is going thru. believe it or not, the muscles used to swallow can quickly forget how to work together. Thats why its so important to take small sips every single day. Yes, the water could go thru the peg tube as well. When counting water, formula counts too. So if your husband has 6 cans a day that are 8oz each, thats already 48 oz of water I suggest picking up some of the tiny water bottles (I think they are 4 oz bottles) and try to get your husband to drink at least one, preferably 2 a day. I would still ask his doc to write the prescription for extra hydration and have him get fluids a few times a week. This will help him to feel so much better, right away. I know it always perked me up. I would be feeling horrible but after a bag or 2 of fluids I felt almost like my normal self.

I know you are concerned about rads becoming more difficult. Thats why getting his intake under control is so important. By taking in the minimums (or more) now, your husband should begin to feel a little better where rads wont be as hard on him. This should also slow or hopefully stop his weight loss which will make the treatments easier too.

Be careful with the fentanyl patch! Read and follow all directions exactly. Never fold, bend, cut, tear, or in any way rip the patch. No long hot showers or baths while wearing the patch as the heat could release too much medication. The patch takes about 24 hours to kick in but will overlap when changing it every 72 hours so he should have a nice level amount of pain relief. If he is still having occasional pain, ask for something to cover his "breakthru pain". Many pain meds come in liquid form, but you have to ask the doc to write the prescription for liquid. Its so much easier to use liquid than to deal with crushing a tablet then dissolving it in water to put thru the tube. Plus not all meds can be crushed, check with the pharmacist. Never crush any time release meds, even over the counter ones!

Constipation when the patient uses a feeding tube can be a little easier to get relief. Adding a little prune or pineapple juice to the formula can help. When my daughter was a baby, I used to add a little karo syrup to her bottles for constipation. Its found in the baking aisle of any grocery store.

I hope I havent overwhelmed you with too many tips. Wishing you all the very best with everything.

I would just like to add that our FO suggested doing dry swallows to keep the swallowing muscles working. I thought this may help your husband if he is having difficulty taking in liquids.

oh gosh no... you are so very helpful. everyone is. just these reminders or thing to remember to talk with the providers about helps.

Yes. we will talk about the pump.. but he is resistant to it as he feels it will just make him more stomach uneasy. Today he actually felt a bit better with the patch. thank you for the reminder about the showers. That I need to remind him of too. I was very careful with it and have a timed calendar for it.
The water bottles is a good idea. he has a few but now that he is not taking in as much, maybe it will be easier to remind him and tempt him to do so with them everywhere.

we have a hydration day set up already.. would they offer yet one more? not sure but I will ask..

He is still producing saliva so has been swallowing that but yes, the next months will be more challenging.

our MO made an analogy that was very scary and understandable... he said the treatments are in essence pushing him and the cancer to the very edge; all hoping that the cancer falls off the cliff and there is just enough support, help, energy, resources and help to hold him back so he doesn't fall off too.

that was a WOW....


thank you everyone. Christine.
you are such caring and helpful people!

What an analogy! As a survivor/patient I dont think during treatments I would have appreciated that comment very much. The doc is right but what a scary and dramatic point of view!

Yes, the doc can write a prescription for your husband to get hydrated several times a week. I dont know if there is an official term for this type of prescription but I always called it a open, standing order. Im interested in hearing how your husband feels after he gets some extra fluids. I always felt so much better after getting hydrated.

Im a huge supporter of patients using the feeding pump. Most common reasons for stomach upset when using formula is the delivery is too fast or the formula is too thick. By slowing down the delivery rate and watering it down slightly it is much easier on the stomach and almost all patients can tolerate it significantly better. If I try doing the push or gravity methods, I have an immediate reaction where my stomach cramps up and/or I feel sick, ready to puke. But with the slower rate from the pump I can tolerate the formula just fine. I kinda think your husband must feel like most of us where everything is completely out of his control. When given an opportunity to make a decision and voice his opinion, patients will often say NO just to feel like they are in control. I did the same thing when I went thru rads and chemo. Plus, most of us are afraid of the unknown. Your husband is already having issues with his intake and Im sure he doesnt want things to get even worse. Unless your husband is able to boost his intake significantly to stop the weight loss, he will continue to feel lousy. At least with added calories every day, he will give his body the fuel it needs to make treatments a little easier.

Hang in there!!! You are doing a great job

Mrs W

Its sounds like the only viable option for his water intake is his PEG. So yes. Try it in small quantities at first and gradually increase per his tolerance. Water intake is very important.

Is he able to handle ice chips? That may ease some of the burning he feels in his mouth and also provide another source of water intake.

Maintaining swallowing should be a priority, but not at the cost of his caloric / water intake. (He can always work on the swallowing and trismus after treatment is completed.

Use the PEG tube as much as needed.

All the pain associated with the surgeries and subsequent treatment is unpleasant and downright nasty at times. But, its all necessary.

You need to take some time and care for yourself during this process as well.

Good Luck / Stay Strong

thank you Christine. your perspective allows insight for me form the inside and gives words and voice to what my husband isn't able to say.
I will talk with him about the pump. he is so averse to the idea of nighttime feeding ...
lots of things we have done this week have helped some but not a ton.
he is now on hydration twice a week not just once so we can focus on nutrition and not just water.
Also he has started taking marinol and antacids daily.
daily bowels is helping too.


right now, though he is still unable to get past intake of about 1500-18oo/cal a day.
it has been a process just to get to this without heaving.

thank you for your support! so so much~!

thanks BJMPittsburgh.
with the change in hydration ( additional day) this allows us to focus on the calories more.

we have made a few changes and those seem to be helping.

his stomach ,, intake are the greatest challenges along with his frustration and worry about trismus.
his openining has decreased and he is extremely discouraged, (understandably) he keeps saying he can't live with a PEG the rest of his life, he won't do this if he has to etc.

I wish there was more research and therapeutic advances. I keep reading PUBMED but don't see much. I find it so hard to believe there have not been surgical advances for severe Trismus. He was doing his exercises but those have become harder and swallowing is getting a bit more difficult too. He says his tongue just feels so weird, fat and incapable.

anyway... just sharing. I will have to do more research and reading on this.
... thank you for your support and encouragement!!! truly it is so appreciated

Mrs W -

I'm 50 and I've been on a PEG / Pump for the last 2 1/2 years and will most likely spend the rest of my life with it. Also have Trismus. (I highly recommend using the pump. Once he gets accustomed to gauging the pressure in his stomach as a means to control when to start and stop the feed, his calorie intake will increase and nausea should decrease.)

I have two active kids, work 40 to 50 hours per week, and try to live my life to the fullest extent possible.

Cancer and the damage its done is a part of my life, but I try to not let it define who I am.

The PEG / pump / stretching to relieve the Trismus are just part of what it takes to get through the day. Just like eating meals are to someone that doesn't have to deal with the aftereffects of OC treatments.

Try not to let your husband become overwhelmed with his situation. He cannot allow himself to fall into the "I can't / won't do" what needs to be done. The Trismus stinks! There is no other way to say it. He needs to focus on getting through the treatments more than the Trismus. The size of his tongue should resolve over time. (It took mine almost two years before mine felt right.)

Keep him focused and moving forward. It does get better. It takes time and a great deal of effort from each of you.

Good Luck