| 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 | [quote=eli318]I would be the last one to suggest not using a treatment if it is effective for you. If it works for you, use it. [/quote]
ALWAYS check with your doctor before doing anything like self medicating or using something questionable. What may appear to be helpful could do more harm than good if the doctor is unaware of what you are doing. Im not specifically speaking about manuka honey as Ive seen several member benefit from using it. Im only saying to ask your doctor before you decide to do anything alternative even like taking vitamins. While we may be patients and caregivers who have learned many things along the road, doctors study for YEARS and treat hundreds so are much more knowledgeable. Listen to your doctors!!!!
The above studies were not done in the US. They do not meet the US's standards to be an approved or disproved treatment. 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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yes I am aware of the studies... They are a mixed bag. However, I can say for certain. It helped me. Maybe not everyone responds. I dont know, but it definitely worked for me. Which is all I can attest to.
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: May 2011 Posts: 9 Member | Member Joined: May 2011 Posts: 9 | hi jayneday. good to hear rads completed and you are ok. i'm srarting my 4th week and had heard of scarey symptoms after rads. hope i don't experience the pain expressed. i still have difficculty with obturator. always aches in my mouth and i'm constantly taking it out whenever i don't have to eat or talk. do you have similar problems.
Operated on 5/11/11. Removal of the partid salavary gland on left side. Removal of soft and hard palate and 3 teeth. Removal of 3 lymph nodes on left side. Radiation from 7/5/11-8/18/11 (33 treatments)
| | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | OP "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2011 Posts: 131 | I'm not to bad now 4 weeks after rads I'm eating and taste is slowly coming back. My obturator is still uncomfortable but not painful I only take it out to clean as it hurts to put back in if left out too long. Before rads I could forget it was there but now it's harder to eat with and my mouth has changed I suppose. Got app with surgeon on 9th so I will see what he days as he wants to do some reconstruction on my nose and mouth. Hope you atecoping it's doable you will get there Jayne x
Scc nasal cavity /hard palate Surgery removal of septum and roof of mouth 15/3/11 cl margins Rt and cisplatin 6 weeks starting 24/5/11 Obturator
Age 45
| | | | Joined: May 2011 Posts: 9 Member | Member Joined: May 2011 Posts: 9 | Thank you for your response. Very beneficial help. I'm starting 5th week of radiation and have terrible dryness of the mouth especially at nighttime. I have irrigated then suctioned out when necessary but it's no cure all. Have you any ideas for drymouth?
Operated on 5/11/11. Removal of the partid salavary gland on left side. Removal of soft and hard palate and 3 teeth. Removal of 3 lymph nodes on left side. Radiation from 7/5/11-8/18/11 (33 treatments)
| | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | OP "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2011 Posts: 131 | I'm 5 weeks out and it's slightly better Obturator still bothered just feels uncomfortable. The hole is not so sore and I just have a slight sore throat in the morning. My taste buds are back slightly but food tastes ok so am eating better. I hope you aregetting through it I know it's rough but you will get there. The ob is a pain but you get useful that too:) it's just a new way of life and learning to adjust. Take care I'm here for ya Jayne
Scc nasal cavity /hard palate Surgery removal of septum and roof of mouth 15/3/11 cl margins Rt and cisplatin 6 weeks starting 24/5/11 Obturator
Age 45
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I tried using a vaporizer next to my bed it helped - now I use the biotene toothpaste!
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
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