hello dear friends-
ah, two RADS left.. chemo is done.
We have made it this far but not without, as many of you already know too well and understand so many challenges.

Right now... can anyone offer suggestions on Pain management ( fully understanding that everyone is unique and tolerance as much so too).
He has significant ear and radiated pain up onto his head now since the RAD boosts began last Friday.
He is on fentanyl patch 25 mcg, with liquid Oxycodone for breakthrough, as well as Tylenol solution and now liquid naproxyn sodium ( aleve)... he needs something every 4 hours for breakthrough. Bringing up the thick, ropy phlegm triggers all sorts of pain from the throat/tongue ( mucositis) and now this ear pain.

he uses ice packs to his ear/head with some relief too.
Goodness, it is so hard to watch one you love in pain... and it seems there is little more to offer.

I am wondering about the next dose of fentanyl but that has risks,

also.. any thought on when to reconnect with SLP now that we are two RADS out from finish?

sometimes this feels so inhumane.... trying to destroy a cancer while almost destroying the man.

thank you for letting me vent a bit.... and if you have any experience with pain management?
thank you !!

Im so sorry to read about the pain not being managed better. Being in that kind of pain is not at all helpful to a patient. It actually makes this whole thing so much more difficult.

I suggest upping the fentanyl to 50mcgs or even 75 mcgs. This type of medication needs to be slowly changed weather going up or down. At 25 mcgs its a very low doseage. When I was about where your husband is in his treatments my fentanyl patch was at 150mcgs. I only needed the stronger dose for about 10 days before I was able to step it back down to 50mcgs. Then the patch was gradually reduced again 2 more times before eliminating it altogether.

Hang in there, this is the hardest part of treatments for about 3 more weeks. Best wishes!!!


PS... Dont forget to take good care of yourself too. Caregiving is a tough job! Try to set aside some time just for you even if its a walk around the block or going out to lunch with friends. You will find that hour or 2 can make you feel like a new person.

The next few weeks are the worst. Just reading about your husband's struggles remind me of what my husband endured...the remembering makes me feel a little sick. That was 2008 and our lives have improved to a point that I could not imagine then.

Rad team had a formula which I do not now remember regarding breakthrough pain. Depending on the frequency & dose required for breakthrough pain (his was liquid morphine via PEG), Fentanyl was increased by 25 mcg. In the end he was on 125 mcg so your husband's dose sounds low in comparison. The step-down went smoothly by the way.

One horrendous weekend pain, nausea, gagging, etc. all increased at the same time. This was prior to Fentanyl patch. I told MD on call that I didn't think my husband could survive more pain without admission to hospital, which I desperately wanted to avoid. Oncologist nearly doubled both the dose and frequency of morphine for the day! MD checked back with me several times that day - good thing because it was so much morphine that I was scared. By the evening I was able to go back to original dosing and my husband was never in that much pain again. When I explained what had happened to tx room nurses several of them said that sometimes to get the pain in check the cycle has to be broken in this way. Can you talk to cancer team nurses in addition to radiologist/oncologist about this?

Hoping this will be controlled soon.

Christine-- thank YOU!!! I read this the other morning only had a moment before heading out to the CCC... but this was so helpful and empowering to advocate for him ( not that they don't understand or appreciate ) but I do think they try very hard to minimize increase in fentanyl until evidence clearly indicates such.. and it sure did.
he is on a much higher patch and still getting some break-thru but moreso his discomfort now comes from burning and edema ( we are using oral solution through PEG tube of naproxyn sodium) which helps.

thank you for your help and support.

ps. when I get the chance, the boys ( dogs) and I take a walk in the woods.. it clears my mind and relieves my thoughts for a bit) and has been my absolute salvation.. and dogs.. well, are therapeutic anyway...

but ... we are at least hopeful now in this phase; done with chemo, done with
rads.... this takes incredible bravery, courage, determination and support to undergo... oral cancer sucks and it's treatment does too. I can only wish for all to be cured.

Travelottie
thank you. your message is so comforting in that you are both in a better place now but I am so sorry you and he endured this at all.

we did increase the fentanyl, and are able to use the oxy and naproxyn sodium in between... but reading about being scared with the morphine.. geeze, I hear you on that.
the ropy phelghm at night at times I think he won't breathe well through this and has me checking him constantly.

our RAD onco actually reinforced the normalcy of this pain and edema and increased the dosage and let us know she is on call this weekend and to call her as needed.

hoping for light.
thank you so much! for your support

Have you tried getting your husband to use a Waterpik (on the lowest setting, with the tongue scraper and add a spoonful of magic mouthwash in the water)? It works wonders in getting rid of the ropey mucus. `

Ask the doc for a prescription to get a portable suction machine. You get this thru a medical supply company. It will help tremendously with getting the thick gunky mucous out of his throat. Another thing that helps with the thick mucous is rinsing several times a day with a mixture of one cup warm water with 1 tsp salt and 1 tsp baking soda. He should swish the mixture around in his mouth and gargle with it for at least a minute then spit it out. If the salt burns his mouth cut back or omit it. Just try your best to get some salt into the mix, it helps with healing. After the salt/baking soda mixture I would use the water pik to help clear out the rest of the gunk. Some members have found seltzer water helps cut the thick mucous too. Also drinking extra water helps thin out the thick gunky mucous.

Boy do I remember the thick gunky mucous phase of recovery, it was horrible! A couple times I felt like I would choke to death on it. Thankfully, this phase of recovery is a short one. One day it will just stop and then expect your husband to go into the dry mouth phase.

Hang in there!

hi all THANK YOU FOR THE SUGGESTIONS.
He is able to do the baking soda and salt water rinses.. but with a severe trismus, I am not sure the suction machine will help .... the water pik might and we do have one.

the rinses are so helpful and he also has hydration scheduled daily to keep up with fluid intake.

the trismus makes things that much more challenging for access to daily oral hygiene.

guaifenison didn't help much so he stopped that.

maybe a water pik rinse with the baking soda/salt might work.
but for now.... he has to constantly bring up gobs of mucous/phlegm.

sigh......
does anyone know what size cannula the suction machine holds... his mouth opening is just not that wide.

does anyone also know if there is a bracelet for people with trismus......... my greatest fear is that one day he may need access to his airway and no one will know he has trismus ...

he is only a trach candidate right now if he were need resuscitation.

I have no ide how they would anesthetize someone with trismus when you can't get an oral airway intubated.

thank you for your support again!

MrsW,

I'm glad some of the suggestions have helped. I hope to help answer some further inquiries

Tea, papaya juice, and pineapple juice helps break up thick mucus.

The cannula to the suction machines are small in diameter. I've used them while hospitalized back in 2009/10. In addition, there are colored sponge tipped sticks, you may have seen, that can be used to get the gunk out, brush mouth, some already pre-moistened or can be dipped in mouthwash, and have used them just to cleanse/moisten my lips when my mouth couldn't open. Then there are the long type q-tips, probably around 6 inches, and probably the smallest mouth opening is needed. Larger, are teeth cleaning tabs that stick to the tip of your finger, that can be used to brush the teeth.

I haven't seen medical bracelets, neck chains, per say for trismus, but they have them where you have inscribed what medical info you want. I was thinking about getting one myself, one reason being I have no carotid(s) in my left neck, therefore, no pulse there.

Not sure if I understand the resuscitation question correctly, but one can do rescue breathing by mouth to nose or with a breathing mask or just doing chest compressions these days, if you're talking about public situations or in the household?

Due to my trismus. I'm often intubated nasally. It depends on the anesthesiologist, and extent of trismus.

I hope this helps.

Pauls post above is much the same info as what I would advise. I have not seen any medical alert bracelet specifically for trismus. I have seen blank bracelets that a patient can get inscribed so that could be a possibility.

Anesthesiologists can put a patient to sleep with a small tube up thru the nose. Ive had several surgeries where this has been done. Usually Im almost asleep before they start as it is a bit uncomfortable. Its similar to when OC survivors get check ups, the ENT will put a skinny tube with a miniature camera on the end up thru the nose and down into the throat. Speaking of tiny tubes, yes the portable suction machine comes with a very tiny tube. Ive had this done successfully on me even with trismus. If your husband is able to drink thru a straw then he can benefit from the portable suction machine. The tubes Ive seen and used are similar to the size of a straw.

Last month I spent some time in the hospital. The hospital had printed neon colored magnets the nurses would put on the door jams for their special needs patients. Unfortunately I had 3 of the neon magnets on my door. They said fall risk, pureed diet only, and (if I remember correctly) restricted airway. There are several other signs on other patients door jams I noticed while walking the halls.

I suggest using the water pik on its lowest setting as a tool to help get the thick gunky mucous out of your husbands mouth/throat. I know this wont be easy but with a little maneuvering it should help. I still think the portable suction machine would be a big help too. When the radiation oncologist told you she is on call this weekend, she showed you she understands your husband is struggling. To me, it sounds like she is experienced with what OC patients go thru. When OC patients are finishing their last few days of rads and the first 2/3 weeks of their recovery phase is the hardest of the whole process. Dont be afraid to call the doc if your husbands condition gets any worse. I dont remember reading if your husband has a visiting nurse check on him. Maybe that would be an option the doc can order for him?

Best wishes with everything

Hi Paul
all of this .. yes.. it all helps.
I thought of the sponges this week but got side tracked..thank you for the reminder. I just ordered them.

I will discuss the suction machine with our provider on Monday... if the cannula is the narrow, that will be fine as he can drink from a straw.

when he can tolerate drinking fluids like pineapple, I will get that going too. for now much burns.

thank you for your help.

as a nurse... I know things, and yet... things like nasal anesthesia is something I completely forgot about.

I like the idea of bracelets for Oral cancer patients. maybe the OCF can look into them and we can purchase from OCF and with a kick back to this incredible resource.

take good care!

If you can get hold of watermelons, Watermelon juice is very soothing and doesn't burn.

I hope you are feeling better and doing well after your need to be in hospital Christine!!!
thank you..

everything you wrote clearly reminds me that there are ways and means to inform health care and others about certain needs for OCF survivors ( which we plan on being... xoxo ).

I will check with our provider on Monday about the suction. He has started using the PIK at the suggestion made here

the sun is out today... and he feels he can go out today for little walk. Progress...
thanks to all of you.

xox

oh... okay... yes... I can..
thank you.

I did actually find watermelon juice bottled recently.
thank you.

you are all so amazing ... and have supported me more than you can know

I am so grateful!

Thanks MrsW! Im much better now

Speaking of watermelon juice... I just saw some yesterday at the grocery store. It got my attention right away as I hadnt seen that kind before. The watermelon juice was in a half gallon container in the refrigerated section by other juices. Im not sure which brand, Im guessing Welches or Tropicana. I didnt buy it but I am interested in how it tastes to an OC survivor.

Im in PA and here its like a spring day, nice and sunny with unseasonably high temps of 67 I hope you enjoyed the nice weather where you are and were able to get outside with your husband.

The watermelon juice that I got good results for was fresh, not in a bottle. I don't know if bottled juice tastes the same. There is much less sugar in the fresh juice.