#84563 11-21-2008 07:28 AM | Joined: Oct 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Oct 2008 Posts: 246 Likes: 1 | I read over and over again that thick mucus is part of recovery process and there is no good solution to combat this side effect.
At 10 weeks post-tx., my husband can swallow, but the muscus is delaying all aspects of his recovery, (eating, drinking, & mental attitude). He does have PEG. He is now voicing that he feels that he can't cope anymore with this choking feeling.
The recent pattern has been that it goes away for a day or two. He's then able to increase diet and activity level, and then it returns and he backslides.
We've tried Robitussin, and suction machine when in hospital for a procedure, and neither helped.
I don't know what response I can expect but we're starting to become frantic over this side effect. Can one live like this long term?
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
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Don't give up hope. He should be right at the turning point where it will suddenly stop being such a major problem. There are different meds that can be taken to mitigate the mucous but be aware that some can temporarily make drymouth worse. Thrush can also be a contributor at his early srtage of post Tx.
Things that sort of worked for me was insuring that my throat was as clear as possible before eating anything. Water, carbonated water and different swish and spit solutions such as saline, baking soda, etc. may help. Start with the least toxic and experiment with different things. Sleep slightly elevated as well. I also ran (and still do) a humidifier 24/7. See if the doctor has any suggestions as well.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2008 Posts: 148 | Very nasty stuff! I wish I could offer something substantive but I agree with Gary that he's probably about to to crest the hill time wise and see some improvement. It took me several weeks to get by this and constant foaming in the mouth once my tx had ended. What is his RO saying?
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | I am about a week farther along and also received radiation appropriate for a BOT primary.
Although I never suffered through the excessive mucous problem, this area of the throat has and still is my most significant healing issue.
Often the "swallow muscle" part of my throat seems quite tight and constricted. For weeks I had spells when a persistent ticklish irritation would develop in that area and cause me to have coughing spells.
Finally that irritation seems to have subsided, but the recurring tightness/constriction is still an issue and I think if I added mucous it would definitely equate to 'choking' like spells.
Of note, my ENT told me this area takes months to heal and normalize and he said in my case this seems to be the area where the radiation damage is the most significant and evident.
Also the radiation left: -- short deep creases around my chin where I had had prior reconstructive surgery. The creases have now gone away. -- extremely tight skin along the sides of my neck that has now loosed up. -- a double ridge of excess skin hanging down the middle of my neck that is now gone. -- And, Now I have developed a golf ball size jello like wad hanging around and below my Adam's Apple.
The ENT thinks in couple months the jello golf ball will also subside. So things keep changing every month.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: Oct 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Oct 2008 Posts: 246 Likes: 1 | Thank you all. We've tried all suggestions except humidifier. I guess we're worn out and at this point no longer resilient. My husband has always been physically fit, with great stamina. I expected that as horrible as the side effects were, once he started to improve and could swallow, it would go faster than this. But this darn mucus...
RO says this will pass - no abnormalities when scoped. Clean PET @ 8 wks post-tx. Reports sounds good but mucus is becoming debilitating. Lottie
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
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Gary listed the options. Cans and cans of seltzer water plus a whole house humidifier got me thru a similiar period. that choking feeking is terrible and I had to lug around a "spit bucket" (actually a cylindrical mini igloo cooler type) because I was constantly swishing the mucous out to clear my throat. It seemed like it would never get better - My sympathy to your husband. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | That mucous is always getting in my tongue where it was removed on both sides and where al the biopsies were taken. I actually have to use a paper towel and my fingers, along with water to get it off my tongue and other hiding places it seems to locate. Very nasty goo for sure.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | 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 | Doea you husband rinse with water baking soda and salt mixture? If not he should be doing that several times per day, it will help. Its a quart or water and 2 teaspoons baking soda, and 2 teaspoons salt (the salt can be omitted or cut back if it bothers him).
Please remember, most of the people responding to your posts have gone thru this as patients. Its a very difficult thing to go thru but it can be done. Some OC patients and their caregivers too have needed anti depressants to help them cope.
One thing I have found most helpful is attitude, it will make things so much easier to think of the good. I have had OC twice within a year and have been left with some pretty bad long term after effects which may be permanent. Your husband is very fortunate to have had a such a wonderful caring caregiver. He is also very fortunate to have won his battle with OC. Congrats on the clear PET scan. It will get better in time. Patience is key as recovery will take quite a long time. 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 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Oct 2008 Posts: 246 Likes: 1 | Christine - Yes, my husband has been using baking soda/salt sol all along.
Regarding attitude, he has a naturally optimistic personality (a great sense of humor and always looking on the bright side is actually how his friends describe him). Allowing this to get him down has been a shock for him (he's never experienced even mild depression, even when going through difficult times in the past).
He has appt with MO coming up. They have a great relationship. If this continues, I will bring up anti-depressants but am hoping that the mucus part will lessen by then. Up until this return of thick mucus, he was coping well.
Thank you, Lottie
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
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | The attitude is the mani weapon fightint this disease. You have to go into the battle saying I am going to win and doing so. Positive is the way and upbeat worked well for me.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | |
Forums23 Topics18,170 Posts196,933 Members13,105 | Most Online458 Jan 16th, 2020 | | | |