| | Joined: Aug 2016 Posts: 8 Member | OP  Member
Joined: Aug 2016 Posts: 8 | Dentist didnt give me trays nor did he mention them either.
I will try the gum, thank you
Someone mentioned Neutrosol and my Dr Prescribed it, sent it to my Target/CVS, but they dont have it nor can they order it.
4/1/16 Sore throat wont go away with meds and testing negative for HPV, dont drink or smoke, no family history
4/19/16 CAT/CT
4/28/16 Left Lymph Node biopsy, positive for SCC
5/24/16 SCC stage III Lymph node, left tonsil, base of tongue
6/6/16 TORS surgery
6/10/16 RND
7/1/16 RO
8/2/16 RT
| | | | | 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 | Is this something a medical supply company would fill? Since you mentioned it was prescription formula, to me it sounds like it could be something primarily used by feeding tube patients? Our site has members from all over the world. Maybe its used in another country? I suggest trying over the counter boost very high calorie. It can be easily ordered by clicking on the Amazon box shown near the top right of the page. OCF gets a small kickback (zero extra cost to you) when you click on that box before going to Amazon. Its better than their Operation Smile donation. The link I sent last night explains why OC patients need to have dental trays and fluoride. Im not aware of any recent changes where patients dont use them anymore. Being over half way thru I dont know if you are able to get them now? Its not possible to go back in time and make changes but you maybe its possible to do something after you finish rads. Heres more in depth info.... NIH -- -- Oral complications of radiation
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 | I understand NeutraSal has distribution problems, and instead of this there is a similar product called, SalivaMax, same ingredients from what I see, which is supposed to work the same for dry mouth, mucocitus as NeutraSal, which I used with my last treatment, and found it helpful, convenient, and not off tasting as the salt water/baking soda rinse is, plus some studies said it worked better. http://www.salivamax.com/
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
| | | | | 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 | Mike can you please clarify if you were talking about Neutrosol or NeutraSal? Is it a nutritional drink or for dry mouth? These 2 items are so closely spelled but they are 2 completely different things. I thought u meant Neutrosol and replied as such while Paul did the same for NeutraSal.
PS... I have used the Salivamax Paul suggested in the above post. It gave me some relief but it didnt do as much as I had hoped.
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 | Mike, sounds as if you and I have similar experiences, albeit my cancer was most likely caused by HPV. But in terms of treatment I can readily identify with your distress. All I can tell you is that it will get better eventually. The posts here are from some of our most knowledgeable family members (you're in the family too now, btw) and I hope you've learned much from them. If you don't have it already you might ask for some viscous lidocaine. It's a thick fluid that you swish around in your mouth, maybe gargle a bit if you can, and it numbs the area. This helps in getting food and liquid down. You didn't say whether or not you were (still) eating by mouth. But it's a good item to have on hand even if you're not, for water drinking. Hang in there! You're halfway, and you've worked hard and endured a lot to get here. You deserve to see it all the way to the end and out the other side. We're all here to help.
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: Aug 2016 Posts: 11 Member | | Member
Joined: Aug 2016 Posts: 11 | Hang in there, Mike. I have 8 treatments left, and though I know from reading here that the side effects won't magically start to clear up right afterwards and may even worsen for a while, I am so looking forward to being done so I can start to heal.
Everyone here has been so helpful and supportive, and the information is invaluable. Don't give up. This is the only chance we have to get "right" the first time, which gives us the best chance of it not coming back. There's no guarantee it won't come back, but if it does, you don't want to be wondering if it wouldn't have if only you'd finished your rads.
People here have all sorts of information and help, and if you just need to vent or to know you're not alone, please do it and whatever else you need to keep going! And do talk to your team. As time has gone on and symptoms worsen, they keep coming up with ideas and products to make things just a little easier. Crushing pills is a Godsend, as I started gagging every time I tried to take one. Be sure to ask which ones you can crush, there are some you cannot. But being able to get a pain pill or Mucinex down when needed sure helps! | | | | | Joined: Aug 2016 Posts: 8 Member | | OP Member
Joined: Aug 2016 Posts: 8 |
4/1/16 Sore throat wont go away with meds and testing negative for HPV, dont drink or smoke, no family history
4/19/16 CAT/CT
4/28/16 Left Lymph Node biopsy, positive for SCC
5/24/16 SCC stage III Lymph node, left tonsil, base of tongue
6/6/16 TORS surgery
6/10/16 RND
7/1/16 RO
8/2/16 RT
| | | | | Joined: Feb 2016 Posts: 5 Member | | Member
Joined: Feb 2016 Posts: 5 | hang in there bud, im one year out and never imagined I would feel better but I do its a marathon not a sprint you will feel better much better trust deeper | | |
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