| Joined: Oct 2011 Posts: 27 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2011 Posts: 27 | I have recently been diagnosed with a T1N1M0 ( HPV+) on my right tonsil tissue (I had my tonsils taken out as a kid). I had a MND on the right side of my neck in which they took out 18 lymph nodes, with one being positive. I just started today my first of 33 sessions of IGRT at the University of Miami (Sylvester). Due to the size of the source and only one positive lymph noce, the team (who have been excellent to date) are not recommending chemo. The radiation dosages that they are scheduling me for are the following: right tonsil area - 70 Gray Left lymph nodes - 54 Gray Right Lymph nodes - 60 Gray A couple of questions: 1) I just starting taking Cephasol today corresponding with my first IGRT session. They recommend taking it every six hours (4X per day), the maximum dosage is 10x per day). Is there any downside (except costs) in rinsing more frequently even though I am at the beginning of my treatment? Also is it OK to gargle with it or just swish it around my mouth per the instructions? 2) My dentist gave me a prescription for Carafate solution. Has anyone had any experiences with using Carafate? Also when should I start using Carafate (I am assuming that I should not use it until I start having issues) 3) My dentist gave me a prescription for diphenhydramine based solution . Similar to the question above, Has anyone had any experiences with using diphenhydramine? Also when should I start using diphenhydramine (I am assuming that I should not use it until I start having issues)? Any other tips/tricks/traps would be appreciated. Thanks for all you help
50 yr old, male SCC of Lymph node right side of neck - 6/30/11 Biopsy: 8/23/2011 MND Right side- 9/19/2011 - 18 nodes - 17 clear T1N1M0 source on right tonsil tissue HPV+ IMRT 33 sessions started 10/18/11. Finished 12/5/11 No Chemo | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Sadly none of those drugs are familiar to me. My dentist gave me flouride trays an flouride that's it! I used the baking soda/ salt mixes to cleanse and heal my mouth during radiation and I used it frequently, I used a waterpik on low to Clem out any guck in my mouth as well. For me the manuka honey staved off mucositis until the last 3 days of radiation! It's worked for others too... But it' doesnt work for everyone. Make sure you clear any meds your dentist has given you - with your RO -  its best to make sure they all know hats going on.  good Luck and take care.
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: Oct 2011 Posts: 27 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2011 Posts: 27 | Cheryl - Did you use your fluoride trays throughout your radiation? I was concerned as I heard that fluoride can be hard on the gums.
Thanks - Steve
50 yr old, male SCC of Lymph node right side of neck - 6/30/11 Biopsy: 8/23/2011 MND Right side- 9/19/2011 - 18 nodes - 17 clear T1N1M0 source on right tonsil tissue HPV+ IMRT 33 sessions started 10/18/11. Finished 12/5/11 No Chemo | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | No - I used them for the first few weeks, I told my dentist the flouride irritated me greatly he said keep your mouth clean brush if you can with a soft tooth brush, try using the trays on weekends only. I still use the trays - they are for life and they still hither my tongue and mouth... Flouride can irritate your mouth - they do have ph balanced ones but apparently they are expensive. I've tried two so far the second was less irritating but still not great - I have an appointment with my dentist next month, and will change to the most expensive but ph balanced then - right now because of the irritation it don't use them right before bed (which is ideal)- but I do use them daily . I have breakfast, brush and water pik, then flouride... After 2 hours I rinse With the baking soda solution...  I also use a very expensive toothpaste that's ph balanced but high in flouride and an alcohol free and gentle mouthwash in my waterpik! Makes me feel fresh. Hoping to be able to do the before bed thng again with the trays once I get the new flouride. I should have told him to give me e most expensive one from the outset - bottom line dental care can cost a lot more! Take care and good luck... You'll do fine!
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: Oct 2011 Posts: 27 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2011 Posts: 27 | Cheryl - Thanks for the advice, I have been brushing with my perscription fluoride toothpaste and will use the trays on the weekend. I used the trays every night for 10 minutes the two weeks prior to beginning radiation. I will use the trays on the weekend (I was a bit concerned of the irritation of the gums especially as during the later weeks of treatment. My Radiologist told me not to worry about the fluoride during treatment.
I bought a waterpick and am using it instead of flossing as I hear it is easier on the gums.
What mouthwash have you been using with your waterpick?
One of my homeopathic doctors that I have been seeing is recommending sea buckthorn oil to coat the mouth during for the next couple of weeks. I am using that with Caphosal with I am using 3-4 times a day even though I have not had any symptoms yet.
Have you or anyone that you know had any experience with Sea Buckthorn Oil?
50 yr old, male SCC of Lymph node right side of neck - 6/30/11 Biopsy: 8/23/2011 MND Right side- 9/19/2011 - 18 nodes - 17 clear T1N1M0 source on right tonsil tissue HPV+ IMRT 33 sessions started 10/18/11. Finished 12/5/11 No Chemo | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | No no experience with that but try manuka honey... It got me to 3 days before the end of treatment. Before I had any real pain. I use tom's of Maine natural mouthwash (alcohol free) just use a but to give some freshness, I also use a Swiss one... It is gentle and alcohol free. I have an appointment at the hospital tomorrow. Ill drop by the dental oncologists then and grab the ph balanced flouride. Hopefully that will make things easier. You can ask your dentist he may have one available. Good luck. Let me know if the buckhorn works... But ask your rads guy before you use it. Weird things can cause problems with radiation. Take care.
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: Feb 2012 Posts: 25 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2012 Posts: 25 | Please advise on how to use the manuka honey.....
BrendaN. 58. Dx2/2/12 Non-smoker Mod drinker Avid exercise- Maui 1/2 marathon1/22/12- Not HPV. Prob cause- 35 yr amalgams-.2/8/2012 SCC, partial glossectomy (right side) SG IVa, 29 nodes, one w/cancer Erbitux 2/29/12 1/week-7 weeks. RAD 3/7/12 M-F for 6wks-clr PET 7/12-2ndclear CT 10/25/12
| | | | 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 | Here is a link to a thread which discusses manuka honey. If you want to find info quickly, its easy to do a search. Type 'manuka honey' in the search box up towards the top right. manuka honey info 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 | | |
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