hi-all
we are three weeks into chemo and rads. the sores have just started. He has severe trismus- taste alterations now so eating has truly become a matter of just a few bites here and there of soup, some foods he can tolerate. We are mostly dependent on PEG feedings. The issues has now become volume and tolerance. He just cannot tolerate much volume and belches, and now has vomited three times this week. Weight is dropping. He sometimes tolerates a slow drip bag feeding over a push feeding... Compazine has helped in the past two weeks but doesn't seem to holding him any longer. We will switch to Zofran more regularly-- and are getting a better hold of the constipation. he does get illoxi , emend and Zofran with chemo. The challenge and worry for me is getting these PEG feedings to equal the cals he needs- preventing the nausea/vomiting all the while trying to manage while he is fatigued and drained.
Goodness.... ginger hard candies seemed to help stave off some nausea for a while. but... not sure if we need round the clock antinausea meds... and not just taking them when he feels it. Today, he vomited and no nausea.. just belching and next thing you know, the whole PEG push feed was gone.

thank you .. if anyone has any thoughts or suggestions

I'm sorry things are not going well for the time being. If he really cannot swallow, or can swallow very little, it is okay to rely on the PEG feeding at least until the end of treatment and a couple of weeks after that.

From what I have read on the forum, some people dilute the feed a bit and others slow it down. ChristineB has a lot of experience with this and has given people good advice. Hopefully, she will be along soon.

As for the anti-emetics, we were always told to get top of the nausea, i.e., don't wait till the vomiting starts before taking Zofran. My husband was on Zofran for quite a bit during treatment.

If you husband shows signs of trismus, maybe you should start with the mouth-stretching exercises now rather than later. Of course, if he is really nauseous, you may want to find a time when he is feeling fine to do it.

It is very frustrating for a caregiver because you are trying to do the right thing but the patient is having difficulty doing it. I would suggest that while being vigilant, you ease up a little if he is really not doing well. The makeup feed can be given divided up among the remaining feeds rather than one whole feed.

In the midst of all this, please make sure you are sleeping and eating well. You use up a lot of energy doing the caregiveing and you don't want to end up getting sick yourself.

Mrs W, Im so sorry to read about your husbands struggles with his treatments. I also started to struggle about 3 weeks into it. Gosh, how I remember those horrible days of nausea, weakness, pain and just feeling horrible. My downfall was I would sleep 20 hours a day and not always get a proper feeding in. Dont worry!!! I have many ideas that will help your husband get thru this.

Yes, give him antinausea meds around the clock. Once he gets behind on them its nearly impossible to get ahead of the nausea. Just in case, there are anti-nausea suppositories if necessary. Also I found zofran to work the best for me to stop the nausea. Pay careful attention to his nausea as it quickly turns into a viscous cycle of being too sick to eat or drink but he still must consume enough to take in daily minimums of water and calories. I found the feeding pump to be very helpful. It can run slowly overnight (maybe start 60 ml per hour which is only 2 oz). After a couple days of tolerating this overnight feedings, bump up the speed to 80ml an hour and after a couple more days 120ml per hour. Even a rate of 120 isnt that much only 4 oz per hour but it sure is better than trying the push or gravity methods. Usually slower feedings with the pump are much easier to tolerate. Just make sure your husband is propped up on at least 2 pillows, if you can raise the head of the bead about 6 inches. I used several books at the head of my bed between the mattress and boxspring. Its very important your husband does not lay down for the feedings as this can cause even more problems of aspiration. he should also stay still for at least a half hour after doing a feeding. I would encourage your husband to either stay in bed propped up or in a recliner to do the feedings and to use the pump to take in at least 5 cans a day. Pay attention to how many calories are in each can. I supplimented my prescription formula with Boost Very High Calorie. It has around 530 (sorry I cant remember the exact number) calories per can. Its also a bit thick so I would use 2 cans of that with adding about another 1/2 can each of water then another can of regular formula with some water. For patients who are struggling with their intake they may need to run the pump nearly around the clock to take in enough calories.

Its imperative for your husband take in at the very least 2500 calories daily. If you can get him to take in more like 3500 or even 4000 calories daily this will help to stop his weight loss. Ask your husbands doc to give you an open prescription to get extra hydration in the chemo lab at least 4 times a week. I know your husband will feel much better after getting a couple bags of fluid. If you can get him to do this every other day it will greatly help with his fluid intake and he will feel so much better. Remember the cans of formula count towards the water minimum of 48-64 oz daily. With nausea unfortunately what comes out must replaced and thats not always easy to do especially when the patient is very ill.

When a patient begins to drop weight that means they are not taking in enough calories. Even overweight OC patients are encouraged to not lose anything. When losing weight quickly, its not just weight its muscle too. This can become another serious issue called cachexia (see link below).

When cooking for your husband, avoid spices (even salt), anything that takes too long to chew and things that are thick like peanut butter. If he wants peanut butter try putting it in milkshakes to add calories and protein. The following list should help you to find things your husband can still eat easily like canned peaches (these will slide right down) or cream soups (helps with sensitive mouth sores). I also enjoyed yoo-hoo and chocolate milk during rads and recovery plus the extra calories sure didnt hurt.


List of Easy to Eat Foods


Your husbands's physician can also prescription magic mouthwash (MM) to help numb his mouth so he can try to eat iwthout so much discomfort. I used MM made of lidocain, malox and benedryl. It was swish in my mouth for about 30 seconds then spit it out and eat. There are some variations of the MM, some patients have had theirs include nystatin (works on thrush) too.

Be aware of any pain your husband has. Its not at all helpful to the patient to be in pain, it only makes everything much more difficult for them. There are many strong prescription pain medications that come in liquid form which would be much easier for your husband than the pill form. Of course you must ask specifically for things in liquid form.

Here is a recipe for something I used to make and drink when I went thru treatments. The shake has anywhere from 1500-2200 calories depending on how its made. The list of easy to eat foods might help too, they mostly have a smoother texture and arent spicy which should be easier to tolerate. If your husband is ever eating and he feels like the spices in his food have set his mouth on fire, milk will instantly neutralize his burning mouth. I also found room temperature foods were easier for me to eat or slightly cool. Anything hot bothered my mouth and hurt like heck.


(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.

Of course you will want your husband to have the very best nutrition he can while he is going thru treatments and recovery. However, when a patient begins to struggle it becomes more about how to get the daily minimum calories and water in than a perfectly balanced diet.

One other thing to understand, rads is cumulative and will get more difficult as your husband continues thru treatments. This is why I stress the importance of getting ahead of this immediately. Every single day he MUST take in at least 2500 calories and 48-64 oz of water. As I mentioned earlier in the post, try your best to push him to get 3500 or even 4000 calories in per day to help him to bounce back. His daily intake has a direct impact on how well your husband will feel. Im certain if you can fix his intake thru the anti-nausea meds around the clock and a good 3500 calories with 50+ oz of water in 2 or 3 days he will feel much better and more like himself. Its so important to get him to this point so he doesnt get discouraged and want to quit. I tried to quit during about the last 10 rad treatments but my son and nurses wouldnt allow it. Im concerned that the last week of rads and first 2 or 3 weeks after it ends are the most difficult. By getting him back on track right away he will be well prepared to handle the worst weeks that are coming up.

I know all of this is not easy on either of you. Dont forget to take good care of yourself and take a break sometimes even if its only a walk around the block to clear your head. You have alot going on and so much on your shoulders. We have been there and understand. Its ok to vent or to lean on us, we will do our very best to get you both thru this.

Hang in there and please stop by frequently. Best wishes!!!

Cachexia, losing muscle

OCF main site --- TREATMENT

OCF Main Site --- Complications of Treatment

[quote=gmcraft]I'm sorry things are not going well for the time being. If he really cannot swallow, or can swallow very little, it is okay to rely on the PEG feeding at least until the end of treatment and a couple of weeks after that.





If you husband shows signs of trismus, maybe you should start with the mouth-stretching exercises now rather than later. Of course, if he is really nauseous, you may want to find a time when he is feeling fine to do it.

It is very frustrating for a caregiver because you are trying to do the right thing but the patient is having difficulty doing it. I would suggest that while being vigilant, you ease up a little if he is really not doing well. The makeup feed can be given divided up among the remaining feeds rather than one whole feed.

In the midst of all this, please make sure you are sleeping and eating well. You use up a lot of energy doing the caregiveing and you don't want to end up getting sick yourself.

[/quote]
oh Gloria... thank you for caring and for being a source of information and concern.
It is much appreciated.
Yes... we are relying more on the PEG feeding and we are diluting a bit. He was never a big eater but a grazer.. so that the PEG push feeding or bag feedings in any volume are causing him to feel full and burping.

and yes he has been doing mouth exercises.. sadly his trismus is quite severe so he tries ..but it is not that easy

but thank you for hitting some of the sense I feel of frustration.. yes.. vigilance and learning how to balance. My overwhelming concern is not letting him not get enough calories. but he is just NOT .. and I am getting so concerned and frustrated with the inability to help him get more in.

thank you for your support!!!

Christine
thank you. I am so sorry you endured so much difficulty .. I so can sense in your written the struggle you went through. I am grateful you can share back with us your support and caring words of help.

We don't have a feeding pump. not sure we can get one, but we meet with the nutritionist again tmw.
His dilemma is so multifaceted, volume, aversion, trismus, not having the taste for food, swallowing discomfort.

but.. yes. I believe we do need round the clock anti emetic Zofran and compazine' maybe that will help prevent the belching/burping/repeating up PEG formula..
viscious cycle.

the think is I KNOW and understand from all I have read here how important the caloric intake is... and so I am frustrated and so concerned because he doesn't seem to appreciate it as much. He seems to believe that as he knows he will lose weight and that is to be expected. He has never been a big eater.. but a grazer.. so volume and PEG feedings are a big challenge. He sees and hears my concern and sharing the critical importance of nutritional intake... but his stomach over-rides his mind.

as for oral intake.. dairy like things are too thick now and he gets overly mucousy. He will tolerate thin yogurt drinks but that is maybe one a day.

ice cream... a little. soup .. a little.

I keep telling him he will end up in the hospital ( and that may be a good thing really) but all he keeps telling me is he is trying ( and he is.. he really is)... so I am at a loss..
we even had a talk about focused priorities.. he says yes, understands, but the intake just doesn't happen.

thankfully, we are in a good place with pain management.
If only PEG feeding was in a better place.

I know he can't afford any more wt loss.

we will get on a round the clock anti-emetic regimen and not as needed.
mmaybe that will be the first step.
and maybe some yoo hoo.... it is thinner than regular chocolate milk.

thank you Christine. !!!!!!!!!!!

I know all of this is not easy on either of you. Dont forget to take good care of yourself and take a break sometimes even if its only a walk around the block to clear your head. You have alot going on and so much on your shoulders. We have been there and understand. Its ok to vent or to lean on us, we will do our very best to get you both thru this.

Hang in there and please stop by frequently. Best wishes!!!

Cachexia, losing muscle

OCF main site --- TREATMENT

OCF Main Site --- Complications of Treatment


[/quote]



Ah.. Christine. I am glad your son and nurses didn't let you quit!! ... HUGS.
thank you for these words too.. yes.. this. there have been tears, sleeplessness, frustration, worry, concern and even anger.

just not an easy place to be in.. not easy at all.
thank you for the support and this place.... to know it is here and available, with kind support and encouragement, resource and amazing people.

thank you !!!!!!!

Christine's advice is so thorough, I have only a few points to emphasize. You need nutritionist and nursing team to help you so everything is not solely on your shoulders. My husband tolerated tube feedings, but had other horrible complications following chemo.

IV hydration given in treatment room, as Christine mentioned, can help tremendously. They can add a med cocktail for nausea, anxiety, etc. It saved a hospital visit for us several times.Seemed like a miracle at the time. An added benefit was that I got to rest because the treatment room nurses were fabulous. I could trust them completely! If I took him to ER/hospital, I would have to watch everything they did.

Sometimes nutrionist will try a change in PEG formula to find something better tolerated.

Is it possible that PEG tube placement needs to be checked?
This is so difficult....I hope to hear it has resolved.

Lottie

Mrs W

Constipation could be a big factor in his discomfort. Pain meds will slow down his bowels and the slower they move, the more pressure feeding through a pump or push feeding will place in his stomach. Once the pressure becomes high enough, the body will relieve itself the only way it can, (vomit).

You might also try a regimented schedule of feeding, (time and volume), with enough time between to digest before adding more. Getting and keeping SOME calories is more important than forcing a pre-determined amount into him and losing most of it and his meds to vomiting.

I've been there and although it sounds ridiculous, once the bowel movements are synchronized with the feed intake, a lot of the nausea and vomiting issues may resolve themselves.

The Trismus will probably get worse during the treatment phase and the pain attached to the stretching is not something I would recommend adding to his daily regimen now. (However, as soon as he can tolerate the pain associated with stretching, he should. When he does, he will have to very aggressive about it.)

Good Luck

bjmpittsburgh, You are absolutely right to consider complications from constipation. Very important that you added it to the discussion.

Dear Lottie
thank you. Yes... thankfully we do have hydration and infusion suite anti emetics and support.
BUT.. yes you are correct .. today we had a conversation with r MO and we also sorted out some of the needs for the anti emetics, timing and we changed the steroids from oral to IV ( oral instantly caused vomiting)

GTube is good.. maybe today we will have a newer start to getting ahead of this .... process.
thank you for your support!

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

Bjm, I have sent you a few private messages, please let me know how you are doing on the PT. I have started a long list of dental procedures and will surely be glad when that is completed.

Mrs W, hang in there, the feeding tube business does get better, well at least you get more used to it. I am sorry Mr W and you are having to deal with the trismus as well. Do keep up the exercises and swallowing. Give each other a hug, you both are going through a lot. Please take time to take care of yourself, it is so important for both of you.

thank you for your encouragement and your courage! defining life, easier said than done, I do believe is in part, about living it as fully as possible without letting the harsh parts deteriorate it.

just because.... hugs to you too!!!!!! thank you for your kind encouragement Jo