| Joined: Jul 2012 Posts: 47 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2012 Posts: 47 | I apologize if this has already been addressed in other posts. I am one week post finishing rad treatments. I am starting to develop a combo of dry mouth and foamy mucous. I I tried to eat some soup and it was a no-go, just couldn't deal with it. So, back to my shakes. This is typical, right? Also, I am still on the Fentynal patches and do not anticipate weaning right now but I want to shortly and am not really sure the best way to do this. Can you share your experiences? Thanks so much.
Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.
Jessica, age 38
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I can't help with the fentanyl but what you are experience at this point is very normal. Congrats on getting through it. Hugs
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Jessica,
As Cheryl stated, what you are experienced is normal. The radiation healing process varies from person to person, but it generally takes a few months to heal. Even though you finished RT, the radiation is still impacting your mouth so it may still get worse before starting to improve.
You will need to wean yourself off the Fentanyl patches and your doctor should discuss that with you. Again, that will vary from person to person and it will depend on your pain level as you step down to a lower dose. Make sure you do not just stop using it as you could go through withdrawal symptoms.
Congrats on finishing!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | The patch should be stepped down from. Say you are on 150, for a week or 2 you would go down to 125, then a week or 2 go to 100, and so on. The lowest patch there is would be 12.5. Believe it or not, the 12.5 really is strong! When you are ready to be rid of the patch, make sure your doc takes you slowly off it.
I have passed your post over to another member who also has frothy mucous. They have gone all over for help, but their situation is much different than yours. They have this going on for several years after finishing rads. This is the only member who I have heard of that has the frothy mucous. Everyone else went from the thick,ropey, choking mucous right over to dry mouth. Its part of the healing process.
Best wishes with your recovery! ChristineSCC 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 | | | | Joined: Jul 2012 Posts: 47 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2012 Posts: 47 | Thanks. My mucous has decided to change back to the thick, ropey yucko kind. Changing mucous - how lovely! Thank you guys for the responses. Just going to keep using the tussin and hope it eventually helps.
Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.
Jessica, age 38
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | A water pik with warm water will help get the thick ropey mucous out of your mouth. Use it on the lowest setting.
It will be one step forward and one step back for a while. Best wishes with your recovery. ChristineSCC 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 | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | You are doing really great!! Hang in there. Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Apr 2012 Posts: 60 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2012 Posts: 60 | You might want to try mucinex for the thick mucus. It seemed to help me more than robitussin. I would buy stock in these items if I new how. The radiation really messes with those lovely membranes of ours. Good luck in your care. Definitely have your doctor help you titrate down off the fentynal. I blew it once and got really ill.
10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Adfitinal suggestions for the thick mucus is to sleep on an incline, use a humidifier, drink water often and before sleeping, rinsing often with salt water & baking soda solution, rinsing with papaya or pineapple juice, rinsing with seltzer water. I hope these, and the other suggestions help. Good luck.
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
| | | | Joined: Jul 2012 Posts: 47 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2012 Posts: 47 | Thanks. I have been trying everything but I end up spending hours spitting out mucous and then it stops and I have dry mouth no matter what I do. I have not tried papaya or pineapple juice, thank you for that suggestion Paul. My hours have also become so messed up, I am up all night and end up sleeping most of the day. I am just trying to get through these next few weeks following rad treatment as best I can, but it is rough! Sorry to complain, thanks so much again.
Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.
Jessica, age 38
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