#41844 09-25-2007 10:38 AM | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | OP "Above & Beyond" Member (300+ posts) Joined: Jun 2007 Posts: 510 | Buzz had #15 of 33 IMRT today, and has had #3 of 6 chemo...doing extremely well, except has developed mouth/throat pain today.
There are a gazillion posts relating to this topic, and I've read many and will continue to read further! What rx should Buzz ask the radiation dr. for when he goes in tomorrow? I understand few get results with use of 'magic mouthwash'....He has oxycodone & hydrocodone...both cause him to hallucinate!
Thanks! Lois & Buzz in NC
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement; T2 N2-B M0 Stage IV-A 28 IMRT + 6 Paclitaxel/Carboplatin Getting stronger every day!
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#41845 09-25-2007 11:18 AM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Oh Boy, Lois, when I saw the word "hallucinate", I cringed. DEaling with bad reactions to drugs was one of my worst experiences with John's tx. And caused many sleepless nights- sitting with him-trying to keep him in bed- talking to the "people" in the room with him, remakeing the bed 10 times a night. You will need to be VERY firm with the Docs about trying ato come up with a pain med athat Buzz can tolerate- and each time he tries a new one, get someone to explain the posible side efects to you first- and how to quickly recognize them. Have you discussed the fentanyl patch? [many love it-John went bonkers on it]If some of the pain is thrush related or mucositis-treat for that. But the over all pain that comes with radiation is a challange. This is going to be trial and error for sure, and I feel for both of you because you both are going to get really tired. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#41846 09-25-2007 12:40 PM | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2007 Posts: 580 | Liz & Buzz, Hallucinations, I sort of remember those from my morphine...not fun.
Mouth/throat pain: The answer is whatever works ...not everyone has the same result from a specific product. I would ask about, Benadryl/Kaolin pectin rinse, A rinse with some topical anesthetic (lidocaine or benzocaine), and you can try the magic mouthwash it may work and is fairly inexpensive. I'll do a little looking to see if I can find any other suggestions and let you know.
Jerry, any other ideas?
Cheers,
Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend. Live, Laugh, Love & Learn.
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#41847 09-25-2007 02:16 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Magic mouthwash appears to work most of the time. I think Buzz should give it a try.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#41848 09-28-2007 05:33 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Please don't ask my wife about my hallucinations. It just rehashes the arguments from that period in our lives. I assure you I was trying to throw up and spare my carpet in my Pathfinder...even though it was 60 something MPH! She still insists I was trying to get out of a moving vehicle. I finally succumbed and decided if I was going to use morphine suppositories or liquid for the breakthrough pain, no more dexamethasone. Everything worked out and all those damn people I talked to in the hospital room disappeared so it must have helped. I had so much pain, some from mucositis and some from thrush. My thrush was and still is very distinct because it is very brownish/yellow. I think it hurt the most. Make sure which is most prevalent and deal with each separately. I used the fentanyl patch and kept increasing it until it hurt less and used morphine or liquid loritab for the breakthrough pain. Once you have it under control it will make life much better. I also used a lot of miracle mouthwash even though some of the liquids made my teeth hurt. Keep trying things until you find the right combination and find a good pharmacist to consult with. Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#41849 09-28-2007 10:40 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | Many patients do better on fentanyl (Duragesic) than on oxycodone, as regards pain control -- however it is not uncommon to have issues adjusting -- issues which might include vivid, scary dreams or even strange hallucinations -- my husband had the dreams for about 5 days and then adjusted. He had had problems with oxycodone and found he functioned better, had less digestive issues, and had his pain much better controlled by the fenanyl.
As regards mouth pain, several things are worth trying besides the "magic mouthwash" which our nurses hated as it led to a number of cases of aspiration (throat numbed TOO much): Gel-Care (or OTC sibling, Rincinol) -- this is a coating agent; l-glutamine rinse (5% solution, powder available at GNC) -- there is a promising anti-mucositis drug in trial which is based on l-glutamine but in a proprietary formulation which delivers more of the amino acid to the mouth mucosa -- and for those who live in countries where it is approved, that is, UK, Australia, NZ, Canada and about 30+ other countries, benzydamine hydrochlorite -- considered the best to reduce severity and duration of mucositis -- in the over-the-counter rinse, lozenge or gel named Difflam or (in Canada) a prescription drug called Tantum.
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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