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advice for problems week after treatment

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

Hi Everyone.  I have been following all the posts and sending positive thoughts and congrats through the air but have not had any time to post.  My husband and I and our two kids relocated to another state to complete weekly cisplatin and 35 rads which we finished last week.  I have been homeschooling out kids, and taking care of my hubby and am finally back home with kids back to school.  My husband tried to get a PEG....but his stomach was not in a safe position to place it (he is among the 1%).  SO, he has gone without one.  It was doable up until we finished.  It seems that all the trouble waited for us to finish.  His throat is excruciating....raw and bloody.  His mucousitis is unbelievable and his nose has bloody cracks and patches of yellow scrapes.   He can barely swallow his pain meds.  He is on fentanyl and liquid meds and tussin (which is so hard to swallow).  What bothers him most is that his tongue seems so swollen that it doesn't fit between his teeth.  He has sores all along the sides and last night even on the front.  He cant do boost or ensure because it sends his mucous into overdrive.  He has been doing rice milk with canola oil and whey isolate protein powder.  He also is now trying to drink coconut water in place of regular water to increase calories.

I am looking for any advice at all to help him be more comfortable.  I was thinking that he just has to endure for a week or two....but any help in the meantime would be great.  He is up around the clock at night....coughing/spitting, choking, taking pain meds, etc.  His tongue drives him crazy.

Also....how long can I expect this mucous and sever pain to last?

 

Thanks in advance.  You are all so great.  Warriors is such a good term.

Kirsten

 

 

cureitall66's picture
cureitall66
Posts: 860
Joined: Aug 2012

Kirsten,

Sorry for the tough time your hubby is having. Being without the PEG can be a challenge for some folks, however, some made it fine through tx without it. My loved one is 10 weeks post and did have the PEG put in about 3-4 wks into tx. He just got it out last week. Does your husband have a suction machine to help get rid of that mucus? We had one throughout tx and and up until about 3-4 weeks ago. It was wonderful! Check with your insurance or tx center on this.

Also, did you get any MM (Magic Mouthwash) prescribed? We used this along with the salt/baking soda/water mouth washes and especially before and after eating. He would sometimes swig the MM and then eat/drink his Ensure/Boost real quick to try and avoid pain. As for his lips or outside nasal area try some Aquaphor healing ointment (you can find at Walmart or any drugstore). His pills can be cut up or crushed if they are not time released. Some Pharmacies will do this for you or you can just ask if they can be crushed. Again, when trying to swallow food or meds, try the MM or soda rinse before and after.

I wish you the best during this journey. I know it can be a challenge. Sometimes you just have to keep trying different things and soon you will find out what works. I'm sure others will chime in here to offer some additional advice.

Take Care,

~Cureital

DX: Male age 51. Stage IV SSC, BOT, 2 lymph nodes involved, HPV+

TX: 7 wks concurrent Rads/Chemo (Carboplatin & Paclitaxel) No surgery.  

MarineE5
Posts: 748
Joined: Dec 2005

Kristen,

Sorry your husband has a building falling in on him, everything all at once. Has he had any Magic Mouthwash to use? I never had that, I was told to use the Baking Soda and Salt solution to gargle and rinse with to take the edge off of the discomfort from the mouth sores.  At this stage, it might be too much for his mouth to try, might casue more discomfort because of the open sores. For some reason, the solution didn't bother me and it was very helpful. I would gargle, rinse and spit, but retain a little bit to swallow and hit my throat on the way down. Kind of broke up some of the mucus along the way.

It will be a few weeks before he sees any relief as we all " Cook " for several weeks after the final treatments because they are accumlative. The Baking soda and Salt solution is 1 teaspoon of each in a quart of room temperature water. Rinse and gargle as often as he feels he needs to if he wants to try it. I had increased it to 1 Tablespoon of each in the later weeks of treatments.

Others will be along with suggestions I am sure.

My Best to Both of You and Everyone Here.

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

Cureitall gave some great possibilities to try....no tube really can put a dent into things.  Aside from the stuff listed like MM, and the soda/salt rinse, I'd get some L-Glutamine....it's suppose to help heal the open bloody sores....for me, it was the only thing I could drink (and it is safe to swallow)....that didn't sting the hell out of my mouth.  I don't know how much it helped in the healing, but it definately helped keep me hydrated. 

A lot of the pain meds come in elixor form....he'd still have to swallow them, but at least it wouldn't get stuck on the way down.  I'd ask my Dr. (or the Pharmacist) if what he's taking comes in liquid....or what he could substitute that does come in liquid form.

p

CivilMatt's picture
CivilMatt
Posts: 2920
Joined: May 2012

Kirsten,

 

I look at all the information above and it is all good.  The swelling and sores should be getting better.  Since you are without PEG, keep sipping your meals, all day long if that is what it takes.  I also used the canola oil for some added calories (what ever works).

 

Hang in there, I see smooth sailing ahead.

 

Matt

gardean
Posts: 1
Joined: Feb 2013

watch his wieght becarefulhe doesnt loseto much. i was 180lbs now 117

 

cureitall66's picture
cureitall66
Posts: 860
Joined: Aug 2012

I found a recipe in a National Cancer Institute Booklet that we received and the recipe says it's for sore mouths. Its like a smoothie. I know Civilmatt said he made smoothies for a very long time and that worked for him. Maybe your hubby will find some comfort with this. I would make sure not to use a fruit that is really acidic. 

Fruit and Cream

1 Cup Whole Milk

1 Cup Vanilla ice cream or frozen yogurt

1 cup canned fruit (peaches, apricots, pears) in heavy syrup with juice

Almond or vanilla extract to taste

Blend ingredients in a blender and chill well before serving.

Makes 1 1/2 cups

302 Calories/7 grams protein w/ ice cream

268 Calories/9 grams protein w/ frozen yogurt 

 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Kirsten,

you are in the worst of it now, it might take a week or two to move into slightly better, but at least not as red to bloody. My husband found that the .9% saline (from the pharmacy, non-prescription), used for rinsing his mouth, holding it while he raised his head back, but not gargling, then lots of spitting gave him breaks with the mucous. 

Also for his neck, use the same saline on 4x4's and a gauze roll. Place the pads on anything red, wrap with gauze.. Sit for 20-30 mins.. It really takes the heat out. We did that 4 times a day. Lotions immediately following.

as far as food.. Whatever works.. Dan could get cereal soggy with milk down, and that was it.. But watch the weight loss. Dan ended up in the hospital for a couple days the week after, then got a central line and he's on TPN feedings (IV) here at home. He finally stopped losing last week and started gaining this week.. The beginning of week 4, and he's up to car rides and starting to care about things again. It's slow.. Just watch for hydration and weight, if he's not hydrated, he won't heal as fast.

good Luck, it gets better soon, hang on, you are doing great!

Kari

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Thank goodness you're done with treatment! This really is the worst part and will last a couple/few weeks and then you'll start noticing some improvement, slowly but improvement none the less. A couple of things you may want to ask your rad onc about is #1 does hubby have thrush? That can really make the mouth hurt like hell! There are meds for that and they usually kick in pretty quickly.
#2 PICC line..... Since he couldn't get a PEG maybe the dr would RX the PICC. He can get nourishment, meds and fluids through there and it goes in his arm not his belly.
#3 suction machine for the mucous. If you don't get one of those(I didn't get one)then try soda water in small sips. I know it's hard when the mouth hurts so bad but I got some relief from the mucous with soda water and also coke. You could try baking soda and water, some really swear by that but I didn't find it too helpful in my case. That was probably just me tho. I also found that the dilaudid that I had for break thru pain really helped to dry me up so I could at least sleep well at night. If it didn't make me so loopy I'd have taken it during the day too because it really did dry up that junk for at least 4 or 5 hours.

Good luck and again, so happy you are done with the glow treatments!!!
Billie

Eddie J
Posts: 23
Joined: Sep 2012

My doctor prescribed scopolamine it did its thing and relieved this side effect check it out it might  work for you

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

So.....after looking at my hubby's log of meds and intake and seeing that by 2pm he had only drank 4 oz of water and 1 cup of protein powder with rice milk, I called the MD at cancer center.  He had us go to local hospital for IV fluids.  What a good call....he had two bags and still didn't pee.....very dehydrated.  After that, he was feeling so much better.  the tongue is still what bothers him most....severe pain and swelling.  It doesn't look like thrush but has sores all along the sides.  However, after fluids, he could swallow his meds (all liquid meds) without having to dilute them so much.  instead of taking forty minutes for him to get misses in, it took 15.

What he does now is swish with straight lidocaine and then coat his tongue with Kankaid.....that gives gim about 10 minutes to get his shake down.  Also.....for some reason, after his fluids, he feels like his throat has opened up.....like it is not as swollen deep in his throat.

Did anyone else who dealt with mucousitis remember if coughing  what looks like blood clots is normal?  

He will be going 3 times a week for fluids now for the next two weeks.

 

Thank you all for your advice and support.

Kirsten

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Kirsten,

Dan definitely started throwing up what appeared to be blood clots, more blood covered mucous, starting early week 5.

Not sure it is normal, but he did a lot of it. He had  bloody noses since surgery, and it just never seem to end until a week or two after. Four weeks out he still has blood tinged materials coming up.

i thought it was horrible, the doctors said, oh. Didn't say anything but oh.

I am sure the others will chime right in..

Kari

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