| Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | My mother completed her 1st week of Cisplatin F-5U two days ago. The problem she is having is her mouth and tongue is burning life fire. There is little splits on her tongue and sores breaking out inside her mouth. The Magic mouth Wash and Biotene spray isn't doing any good. Does anyone know of something else she can try. She's in so much pain from this.
Thanks Heidi
Sweetpe Caregiver RE:My Mother Age 70 Non Smoker SCC 3/4/2014 Left rear jaw Mandiblctmy 3/25/2014 35RAD Completed on 06/03/2014 MRI 9/3/2014 25mm lobulated recurrence left mandible/floor of mouth carcinoma 9/23/14 Salvage Surgery MET(s) 9/23/14 Salvage Surgery Not Successful Chemo Recommended 1st Round of Cisplatin Chemo Started 10/20/14 Cisplatin stopped 11/20/14. Side affects to bad. Chemo started again 1/22/15 Carbo/Docetaxel Passed Away April 22,2015
| | | | 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 | Im so sorry to hear your mother is hurting! Your mother should be on some type of pain medication to manage it. Ask the doc to prescribe something strong. Nobody should have to hurt! It does the patient absolutely no good to be in pain, it just makes everything so much harder.
Also she can rinse her mouth a few times per day with 16 oz warm water, 2 tsp baking soda and 2 tsp salt. I have to warn you the salt will burn but it is very helpful and promotes healing. You can cut the salt back to 1/2 tsp or 1 tsp. This mixture will help keep the ph balance in her mouth stable while helping to heal the sores as well. 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: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Thanks Christine I will fix the salt & baking soda and I'm gonna call the doctor and get a stronger pain medicine for her. All she has is Norco 7.5 and she is taking 2 at a time rite now.
Thanks Heidi
Sweetpe Caregiver RE:My Mother Age 70 Non Smoker SCC 3/4/2014 Left rear jaw Mandiblctmy 3/25/2014 35RAD Completed on 06/03/2014 MRI 9/3/2014 25mm lobulated recurrence left mandible/floor of mouth carcinoma 9/23/14 Salvage Surgery MET(s) 9/23/14 Salvage Surgery Not Successful Chemo Recommended 1st Round of Cisplatin Chemo Started 10/20/14 Cisplatin stopped 11/20/14. Side affects to bad. Chemo started again 1/22/15 Carbo/Docetaxel Passed Away April 22,2015
| | | | 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 | Ask the doc about the fentayl patch. It has worked very well for many here, including myself. This medication is a step up and step down one where it would gradually be increased or decreased. Read the directions thoroughly. The fentanyl patch is the strongest pain killer available. Never fold, bend tear, cut, rip or damage the patch. Always put it in a different place, changing it every 72 hours. I used to change mine about every 68 hours to make sure it didnt wear off. It can take up to 24 hours before it starts to work. If she could get the patch on today, about 12-16 hours later she would begin to have some relief. When wearing the patch do no long hot showers or baths as very hot water could trigger too much medication being released causing an over-dose. It also can make the patient tired and constipated. I would guess your mother would start at at least 50mg, maybe even 75mg. She can also have the norco in case she is having breakthru pain.
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: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | If she ramps up the pain relief keep on top of the constipation. After my bout they put me on Targin, which has an agent that stops the constipation. There are other ways to manage constipation as well, the important thing is to be 2-3 days ahead of it. (Not 7 days behind it like me!) Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Christine Thanks so much for the Advice on the Patch. The Doc. suggested the patch to me on the phone before I could even ask. I have already been to the pharmacy and the patch is now on her. I'm glad because she has a hard time swallowing the pills. She will still use the Norco for break through. I'm glad you gave me a heads up on the use of them.
OzMojo We already had an experience with the constipation and lord knows it was nothing nice. The doctor recommended Colace but it didn't work to good. It seems like Dulcolax is helping some . Sometimes she has to take 2 but it helps. Thank you also for the advice. I appreciate it a lot .
Good Luck Heidi
Sweetpe Caregiver RE:My Mother Age 70 Non Smoker SCC 3/4/2014 Left rear jaw Mandiblctmy 3/25/2014 35RAD Completed on 06/03/2014 MRI 9/3/2014 25mm lobulated recurrence left mandible/floor of mouth carcinoma 9/23/14 Salvage Surgery MET(s) 9/23/14 Salvage Surgery Not Successful Chemo Recommended 1st Round of Cisplatin Chemo Started 10/20/14 Cisplatin stopped 11/20/14. Side affects to bad. Chemo started again 1/22/15 Carbo/Docetaxel Passed Away April 22,2015
| | | | 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 | Ask for prescription pain meds to be given in liquid form. Ones Ive used are Lortab and Neurontin (AKA gabapentin which works great for nerve pain). Your poor mother is a real trooper if she is still swallowing pills with her mouth being so sore. Glad to hear she is on the patch.
She should feel some relief very soon. If its been 24 hours and she still is in alot of pain, ask the patch mg to be upped. I was on 50mg to start and after several weeks moved all the way up to 150mg. I stayed on the higher dose for less than 2 weeks and gradually went all the way down to 12.5mg over a period of about 6 weeks. 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: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Thanks Christine The Patches are 75 MG and she has it on for about 8 hours now. I'm sure it will give her some relief . I told her about the advise you've given and she Thanks you from the bottom of her heart.
Thanks Heidi
Sweetpe Caregiver RE:My Mother Age 70 Non Smoker SCC 3/4/2014 Left rear jaw Mandiblctmy 3/25/2014 35RAD Completed on 06/03/2014 MRI 9/3/2014 25mm lobulated recurrence left mandible/floor of mouth carcinoma 9/23/14 Salvage Surgery MET(s) 9/23/14 Salvage Surgery Not Successful Chemo Recommended 1st Round of Cisplatin Chemo Started 10/20/14 Cisplatin stopped 11/20/14. Side affects to bad. Chemo started again 1/22/15 Carbo/Docetaxel Passed Away April 22,2015
| | | | 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 | Heidi, thats what we are here for. We are all in this together.
Hope your mother feels better very soon. 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: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | It could be dry mouth, infection, Mucocitis, neutropenic ulcers, a combination of these, and others. Drink plenty water, see about getting extra IV hydration at the chemo center, use less harsh toothpaste, no alcohol mouthwash, soft toothbrushes, sponge type or baby brushes, rinsing the mouth, brushing too often with harsh products can cause mouth issues. Rinsing with Glutamine powder helps in repairing tissue, helps neuropathy too. Magic mouthwash, similar products, help ease the pain, antibacterial rinses like chlohexadine help with mucocitis. Juven, made by Abbott pharmaceuticals, has Glutamine in it, and was given to me by my chemo center, which is swallowed, tastes good, repairs the mucosal lining. NeutraSal, a prescription rinse, helps with dry mouth, Mucocitis. My radiation center sprayed my mouth daily with a saline solution, which helped with mucocitis, gets the gunk out, helps controlling thrush. Those home oral cleaning products can be used the same way. Sucking on ice chips may ease the mouth pain. Try to avoid acidic foods, anything else that may irritate the mouth like hot temperature, spicy and sharp textured foods.
I hope this helps, and check with the doctor(s).
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
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