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#193879 02-14-2017 06:07 PM
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MrsW Offline OP
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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 !!


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!
MrsW #193880 02-14-2017 08:19 PM
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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.


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
MrsW #193883 02-15-2017 06:57 AM
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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.


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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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.


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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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


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!
MrsW #193904 02-18-2017 08:56 AM
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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. `


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.
MrsW #193905 02-18-2017 10:46 AM
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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!


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
MrsW #193906 02-18-2017 12:01 PM
Joined: Nov 2016
Posts: 59
MrsW Offline OP
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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
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!
MrsW #193907 02-18-2017 08:24 PM
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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.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






MrsW #193909 02-18-2017 09:25 PM
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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


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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