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OES Offline OP
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Thank You Alpaca

I took Morphine tonight at 11Pm and woke up at 2 it had no impact on my pain. My throat has now changed to being even more closed and sore than it ever has been. This first week after Rads is really getting the best of me.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
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You can ask your doctor for another kind of painkiller. People respond to pain killers in different ways. Sometimes Tylenol works better for some people, believe it or not. It is important to get on top of the pain. There will be other side effects to contend with, such as fatigue, skin breakdown in the area where you have been radiated. So, deal with the pain first, it will help make life a little easier.


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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OES Offline OP
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Gloria are you saying the skin breakdown continues to occur after radiation has ended ? My neck is sore but never showed more than redness. I traded emails with the Dr. this morning. He wants to prescribe a fentanyl patch. After reading the challenges with it, I am going to try to stick with children Advil, I learned this week it goes down with out magic mouthwash. Plus it has an inflammatory element to it which may help with the swelling. If that does not work I guess the patch will be the solution.





Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
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Radiation continues to keep working even after treatments have ended. Im sorry but I cant remember how much longer it continues. This is why most patients will continue to decline and see more side effects during the first days/few weeks after rads ended.

Many OC patients would use some type of cream or lotion on their "sunburned" skin. I used a prescription called beta-val cream. Make sure whatever you put on your sensitive skin that you pat it on and never rub it in. Allow it to soak in on its own, reapplying several times per day. If your skin begins to have weeping sores thats completely normal, I had them too. At that point continue gently patting on the ointment and place a nonstick piece of gauze on the wound. Dont tape it on as it will only make things worse when it has to be removed.

The fentanyl patch is for pain. Its the strongest pain medication their is. Its very simple to use since you only have to put a new patch on every 3 days. Just be sure to always follow the directions by never bending, folding, cutting, tearing, ripping or otherwise damaging the patch. Avoid long hot baths or showers while wearing the patch too. But that should also be done if your neck has the open weeping sores from rads.

If you have only just started to need pain meds then you have done very well with your treatments. Most of us have been on pain meds from about the 4th week on. One thing that helps patients with how easily they get thru treatments is how well they can meet their daily minimums of 2500+ calories and 48-64 oz of water. If you have been able to comply with this then thats probably why you were able to do so well. Continue to keep up the minimums for at least the first year post rads to help your body recover.

Hang in there, very soon you will begin to feel better.


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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Christine has given you very good advice. The only thing I can add is that when you put moisturizing cream on your neck, pay special attention to the folds in the skin. Those areas will likely develop worse sores. For relief in between applications of skin cream, do a saline soak. Put saline solution on gauze and cover it with a clean tea towel. Leave it on for five, ten minutes. The saline helps with healing.


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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OES Offline OP
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I have not been getting the needed calories and I know this is not good news, my weight was holding steady until today I had a surprise drop. My skin has not broken down at all I only am a little sensitive in the face and neck area. I have been using a creem called Miaderm radiation relief. Developed specifially for radiation patients. I decided to hold off on the fentanyl patch, I did not like the warnings that come with it. I am still using children Advil and Acupuncture.

I am giving myself till next Wednesday to see if I can continue to manage the pain the way I have, if not then I will go for the patch. The biggest area of pain for me at this moment is when I am doing the yawn stretch exercise. My number one overall problem is still the Mucous build up, this is what gets me down every day.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Joined: Jun 2007
Posts: 10,507
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By not getting enough daily calories, it will make recovery much harder. After rads, your body has been thru so much it needs significant fuel to rebuild itself. Im a broken record about intake. Ive spent many days and nights lying in a hospital bed due to my own laziness and denial about what I was taking in. At one point, my son pushed me into the doctors office in a wheelchair. My doc looked at me and admitted me into the hospital for dehydration and malnutrition. I felt so terrible, I actually thought I was in the first stages of dying. Ever since I recovered, I turned into a nag about intake so others wont suffer like I did.

The thick gunky mucous is horrible! Its can make you gag. Have you looked into getting suctioned at the doctors appointments or asking your doc for a prescription to get a portable suction machine to use at home? It really does make a huge difference when you get all the thick mucous suctioned. Soon enough this phase will be over and the dry mouth phase will begin. Most patients switched from the heavy mucous to a dry as the desert mouth seemingly overnight around the 3rd or 4th week post rads. I know its a horrible side effect. Hang in there, soon you will be past this phase.



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
Joined: Jan 2016
Posts: 55
OES Offline OP
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Joined: Jan 2016
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I asked about the suction machine last time this was suggested. The Dr. Had never heard of doing this. Happy to say I gained some of my weight back tonight. Even though I am not getting enough calories my wife is trying to make sure I get the protein. I am hopeful once this mucous problem ends I can begin taking in more calories. I spent a man nimum of an hour just trying to get clear before I go for the Scandi shake

Frankly I am looking forward to real food again.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Joined: Jun 2007
Posts: 10,507
Likes: 6
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I wish your doctor had been able to help you with this! Ive had the mucous suctioned out several times by the nurse. Its not pleasant but the relief I felt afterwards was priceless! Im surprised the doctor is not aware of how helpful it is to patients to use a portable suction machine. Which of your doctors said they never heard of this? Maybe try asking your radiation doc or their nurse.

Check out page 4 of the following document. Its titled Managing Copious Mouth/Throat Secretions


Stratagies for managing Radiation Induced Mucositis

Here is one of many threads on managing the thick mucous.

Excessive phlegm thread


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
Joined: Jan 2016
Posts: 55
OES Offline OP
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Joined: Jan 2016
Posts: 55
Oh my This thread depressed me even more. There are people that have this problem years later.

I need this gone.

Last edited by OES; 02-25-2016 01:02 PM.

Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
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