| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | OP  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Thank you very much for taking the time to do the survey!!!
When these things come along, its our chance to have our voices heard. I greatly appreciate how our members have pitched in to help future OC patients.
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | After a little over 3 weeks 25 members have participated in part 1 of the survey and 12 have done the product testing in part 2. Thank you all very much for participating!!! Thru studies like this it brings attention to the dental community how important and also sadly how lacking dental care is for OC patients. DENTAL SURVEY PART 1... Online Dental Survey DENTAL SURVEY PART 2.... Part 2 Product Testing and 2 part online survey *** part 2 is only available to patients in the US, Canada or Mexico If you have any questions please send me a PM or there is direct contact info included with the survey.
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: Nov 2013 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2013 Posts: 104 | How does everyone feel about the products so far?
I have mixed feelings about this. On one hand I haven't started them for fear that they will actually give me massive relief and I am getting used to the small amount of xerostomia...
My level of discomfort is only apparent when I eat anything dry or white meat, and of course at night, it gets bad enough to wake me up 1 or 2 times an evening.
I can go all day long without a water bottle and to some extent work outside for an hour or so before going dry.
So my fear is this stuff actually works and since its not prescription based, and a specialty product its likely going to be an expensive luxury(ala Biotene) and extra $110 a month for oral care tacked on to my prescription toothpaste ($25) is a bit onerous for the vast majority of folks who need it medically.
I have two infants and a wife who had to shift to stay at home due to daycare costs in NYS, so the disposable income isnt what it was.
I mean if they made a 30day package that was prescription a $5 co-pay and recoup the rest from my insurance I would be a fanatical participant.
Am I thankful for the trial products? definitely.
Not sure how to feel...
Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
| | | | | 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 | I believe this journey is full of highs and lows; ups and downs, etc. You can either find something that helps with comfort right now and that may be different in a month, a week or even every day. Comfort will cost in ways it hasn't before. If money is more important, don't spend the money, accepting it may work or may not. There will be many trials and errors.
I would say if you can go all day without water, your answer is in front of you.
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
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Got my pack yesterday. It isn't quite what I'd expected, i.e. a trial that requires following a particular regimen. But I'm glad to do it and will follow through assiduously and take the survey when the 10 days have gone by. I don't have the major dryness issues that many of our family endure so I'm not sure if this will prove very helpful to me. We shall see!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | The dental surveys are still available for anyone who has a few minutes to complete them. Thank you in advance for helping!!! Online Dental Survey The second link is another "hands on" study for OC patients/survivors who reside in North America only. Its a two part online survey and a 10 day test of dental products specifically made for OC patients/survivors to help with dry mouth. Part 2 Product Testing and 2 part online survey
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 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Well, I finished the 10 days without incident. The flavor of the mouthwash was pleasant, orange, and I must say the lozenges, although an odd flavor that takes some getting used to, really do promote saliva flow while you're sucking on them and for some minutes thereafter. I'll put the surplus in my backpack for hikes in hot weather.
Don't really think the 10 days of the rinse, lozenges, gel and spray did anything for me. I also can't comment on whether or not continued use of these products would be beneficial in the long term. Maybe they would for someone with an extremely dry mouth.
I found the ending survey interesting in that it didn't address the trial. In fact I even wondered whether or not I was doing the right one. But I'd typed in the address they listed on the accompanying form, including entering my personal survey number.
I hope this helped the company and, more importantly, that it helps people down the line.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Thank you very much for your participation, David! I agree, hoping that this study will benefit future OC patients.
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | This survey is still accepting participants. Please help us to help others by taking a little time to do this study.
Thank you!!!
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: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Just finished the survey, Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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