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#193747 01-15-2017 02:24 PM
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MrsW Offline OP
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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

Last edited by MrsW; 01-15-2017 02:25 PM.

MrsW
Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
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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.



Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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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




Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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MrsW Offline OP
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[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!!!


MrsW
Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
Joined: Nov 2016
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MrsW Offline OP
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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. !!!!!!!!!!!


MrsW
Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
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MrsW Offline OP
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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 !!!!!!!


MrsW
Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
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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








CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
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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


1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

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


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
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MrsW Offline OP
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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!


MrsW
Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
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