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Geri Offline OP
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Hi Everyone,

Richard had his last radiation treatment yesterday. We are so relieved to be done with treatment and I want to thank everyone for being so supportive. Now he is trying to deal with the terrible mucous that is causing gagging and spitting up. It's an awful, salty taste and I'm sure you will know exactly what he is going through. I know he will have to deal with this for awhile, but if anyone has any hints about how to cope, please post.
Eating and keeping food down is difficult. Even the tube feedings are hard, He's managing, but he doesn't want to lose weight now that the treatments are over. He did such a good job keeping weight on during the treatments.
He is using the seltzer water and ginger ale. Also the Biotine mouthwash works good. Any feedback would be appreciated. Geri


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
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Geri,

Hold on now as the first couple of weeks post Tx are usually the worst we have to deal with so just be prepared and if it doesn't turn out that way, so much the better.

Re the thick stuff, I didn't find anything that made it better. I did carry a small Styrofoam cup with me to use to constantly spit it out but night times can be rough as I would wake up with a throat full and barely make it to the bathroom. I think mine only lasted a 2 weeks or so and then the dry mouth sets in.

Fun times but he is soooo close to the end of the tunnel.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Geri, My husband had a horrible time for 3-4 weeks post-tx with mucus, gagging, and vomitting. Things that helped: He slept upright in a recliner. Flouride trays and brushing teeth triggered gagging & vomitting spells, so temporarily he just rinsed when able. Ativan disolved under tongue helped.

This was a bad time and twice he went in for infusions - all the good meds they push IV helped him get some rest for part of the day. He did not lose weight as I was able to keep up with the tube feedings/flds.


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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Hi Geri:

Congrats on the treatments ending. Now onto the healing. Next couple weeks will still be difficult, but it soon will get better for your husband.

For the mucous, try making a mouth rinse for him. Its aprox. 2 cups water w/ 1 tsp baking soda and 1 tsp salt. Omit the salt if it bothers his mouth. Have him rinse with that at least 5 times per day. Try also taking musinex or robitussin cold meds. Just be careful to ask the doc or pharmacist abotu any drug interactions before taking.

Best of luck with your husbands continued improvement. You are a great caregiver.


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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Geri,

Christine has got the tips! I'm allergic to baking soda, so I just used warm salt water, which didn't hurt my tender mouth at all. I was on a steady diet of robitussin and tried to stay hydrated and kept a trash can by my bed. Otherwise, I just had to get through it. Its a horridly slow process, but it does pass!


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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My nurse practitioner (prime CCC team member with whom I am dealing post-op) recently prescribed Guiatuss (apparently the prime expectorant ingredient in some versions of Robitussin) to help dry up the secretions I am having -- I sleep propped up and the secretions slide down to where they stop at my restricted throat, build up there and wake me, so I wasn't getting much sleep at a time -- But the Guiatuss also seemed to be nauseating me a bit, so I stopped using it -- They are getting to be much less than they were.

She just prescribed something new for the purpose, but I haven't picked up the prescription yet.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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Pete

I hope that the new prescription helps. Not getting much sleep at a time makes things rough. I always feel tired when that happens to me. I had been waking up about every 2 hours because of some pain that I am having, but now I am getting about 6 hours in before I wake up due to some Zanax the doc gave me.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace

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