Previous Thread
Next Thread
Print Thread
Page 11 of 11 1 2 9 10 11
Re: The worst part for me so far [Re: OES] #194686
06-20-2017 05:02 AM
06-20-2017 05:02 AM
Joined: May 2017
Posts: 5
B
baileyif Offline
Member
baileyif  Offline
Member
B

Joined: May 2017
Posts: 5
PaulB,
Can you explain a little more what you describe in the 3rd response of this thread. Is this something that you would recommend my mom ask for from the get go of radiation.? What is the difference between having them spray your mouth out daily and you rinsing after radiation? In another reply I read they sprayed out your mouth with saline. Did they spray your mouth after radiation? Did they use just a regular spray bottle? Just more of what you you wrote would be appreciated. Which of these items would you suggest someone request in their first meeting with their Radiologist? It would be the radiologist not the oncologist? Which one prescribes the meds and the monstor mouthwash? I expect my mom will see a radiologist next. Thank you for further clarification., Lynn



I don't see mentioning working with a registered dietician, a Speech and Swallow Therapist, SLP, which I recommend. When I did radiation I had my mouth sprayed out daily in radiology, which helped mucocitus,and thrush, which are sometimes difficult to differentiate and occur concurrently, along with other conditions, including bacterial or viral infections, which need to be treated appropriately, and had extra hydration in radiology, in addition to being prescribed NeutraSal for Mucocitus & Dry Mouth, Nyststin for thrush, Magic mouthwash for pain in order to swallow, opioids.



Adult Daughter of Mother with OC
Re: The worst part for me so far [Re: OES] #194689
06-20-2017 08:38 AM
06-20-2017 08:38 AM
Joined: Jul 2012
Posts: 3,178
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,178
NYC
Lynn,

I'm not sure of the name of the machine to debride the mouth out with, but it was a small air compressor with a long nozzle sprayer that they attached a small brown glass vial or put in, saline solution, in its absence several times, which was done in the radiation center exam room by the nurse. I assume not all centers do this as my first IMRT didn't, but they weren't geared toward head and neck cancer patients. My second round, at a different facility highly experienced with head and neck cancer, did it every day, either before or after the radiation session. So did the Proton Cenrer at another location.

I also was prescribed nystatin then, and used the NeutraSal rinse instead of the salt water baking soda. NeutrSal is not available anymore, but heard of SalivaMax, that has pretty much the same igediants.

I previously used magic mouth wash, which there are about 25 different concoctions and various names, but all have about 3-5 ingredients to numb the mouth. Besides that, I've used oxycodone, fetynal....and plenty of other medications to deal with whatever arised.

I hope this helps


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






Re: The worst part for me so far [Re: PaulB] #194690
06-20-2017 12:51 PM
06-20-2017 12:51 PM
Joined: May 2017
Posts: 5
B
baileyif Offline
Member
baileyif  Offline
Member
B

Joined: May 2017
Posts: 5
Thank you so much Paul I hope it helps her tooo, lynn


Adult Daughter of Mother with OC
Re: The worst part for me so far [Re: OES] #194692
06-21-2017 07:49 AM
06-21-2017 07:49 AM
Joined: May 2017
Posts: 5
B
baileyif Offline
Member
baileyif  Offline
Member
B

Joined: May 2017
Posts: 5
wow, i looked up the term medical debriefment and that one is not going on my list!.That one is definitely a doctor's
evaluation of the specific circumstances...not for a list maker. Outside of reading about how people dealt with symptoms at home,
which was helpful as I'm oblivious at times. I don't have natural empathy, I have to work hard at it.

there isn't much for a list maker here. I'm disappointed, I thought the daily mouth spray in Radiology
was an Ace in the hole, like Lorenzo Oil or something. I'm sorry the conditions did exist for you that daily oral debriefments
were indicated. And thank you for sharing your experiences. I'm prepared for multiple ways to deal with symptoms at home.

btw I have a chronic condition that requires I see a neurologist every 6 month and pay way too much for prescription drugs.
I find if I respect a doc's time, they actually like it when I say this is what I'm reading on the internet how are you addressing these issue?
They don't like it when I say I want you to do THIS. And I don't, I just want to know their plan for the issues i read on the internet.

I hate thinking of things after the fact.


Adult Daughter of Mother with OC
Re: The worst part for me so far [Re: OES] #194694
06-21-2017 11:24 AM
06-21-2017 11:24 AM
Joined: Jun 2007
Posts: 10,296
PA
C
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,296
PA
Bailey, those of us who have been thru things like the medical debriefment tend to take these things in stride as just another thing we must go thru. Ive had it done more times than I can count and Im sure many others here have as well. Its not to say we dont mind it (Im sure we all hate it) its just we have learned to adapt and do what we must do to eliminate the cancer and recover as much as is possible. Ive had so many biopsies that Im ok to have it done without numbing my mouth or being put to sleep. Its amazing on what you can get used to when you dont have a choice.


Christine
SCC 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 smile
Re: The worst part for me so far [Re: OES] #194697
06-21-2017 12:32 PM
06-21-2017 12:32 PM
Joined: Jul 2012
Posts: 3,178
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,178
NYC
If it's related to my post, it's daily debride, not debriefment, meaning to clean the mouth out?

There are many other OTC, natural products, and prescription drugs to help with mucocitis, dry mouth, mucus, and infections that may occur, and tailored to the patient.


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






Re: The worst part for me so far [Re: PaulB] #197684
12-11-2018 07:16 AM
12-11-2018 07:16 AM
Joined: Jan 2016
Posts: 55
Pennsylvania
O
OES Offline OP
Supporting Member (50+ posts)
OES  Offline OP
Supporting Member (50+ posts)
O

Joined: Jan 2016
Posts: 55
Pennsylvania
I am approaching three year mark of when I began my treatments, it has been a year and 7 months since my last post. Not much has changed for me, dry mouth is still uncomfortable, wish they would have better solutions and sometimes when you take medication for a cold it gets much worse. I wish someone would invent a fix for dry mouth, I miss the flavor of Colgate toothpaste but I am eating JalapeƱos and other hot spicy items again. They dry mouth also does a number on your teeth, brush, floss and well make sure you keep up with your personal dental hygiene. Travel in the plane also takes its toll as I write this while in Switzerland. The one topic I am proud of is sharing my information with others to help them through this as others have helped me. Someone come to me year ago they wanted to start him off with a feeding tube and other drastic measures, I shared my experience and introduce my team, he got through the treatments lost some weight and is a survivor. I will update again after the three year all clear mark.

Happy Holidays to all !!!

Leonard


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Re: The worst part for me so far [Re: OES] #197708
12-18-2018 08:25 PM
12-18-2018 08:25 PM
Joined: Sep 2018
Posts: 63
V
VirgoMomof3Boys Offline
Supporting Member (50+ posts)
VirgoMomof3Boys  Offline
Supporting Member (50+ posts)
V

Joined: Sep 2018
Posts: 63
Glad to hear that all has been well in these past years for you, with the exception of dry mouth. Cancer, I'm learning, is quite unfair to us head and neck cancer patients. I am currently in radiation and I'm still adjusting to the fact that my new normal in life will include a LOT more work on my part in the dental arena and that dry mouth will also be a part of my life forever. And a speech impediment, even if it's slight. Here's to hoping for more clear scans from here to eternity for you! smile


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
Page 11 of 11 1 2 9 10 11

Support OCF


Help OCF

Shop Amazon and Help OCF

Top Posters(All Time)
ChristineB 10,296
davidcpa 8,311
Cheryld 5,260
Brian Hill 4,744
Gary 3,552
Newest Members
Richard G., firewife, Hazel, Worrier, Dover
12043 Registered Users
Forum Statistics
Forums23
Topics17,480
Posts193,501
Members12,043
Most Online306
Aug 21st, 2016
Brag Box
Powered by UBB.threads™ PHP Forum Software 7.7.1