Previous Thread
Next Thread
Print Thread
Page 10 of 11 1 2 8 9 10 11
Joined: Jun 2007
Posts: 10,507
Likes: 2
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 2
Leonard, it sounds like you are doing incredibly well only being 13 weeks post rads. CONGRATS!!!!!

Im sure it will help others who are just finishing to know in a few weeks everything will be much better. It takes the body a full 2 years for a complete recovery so expect to see changes in your sense of taste thru that point. You will need to still focus on your intake to help with your recovery. Until at the very least you hit the first year mark, every day shoot for a minimum of 2500 calories daily and 48-64 oz of water. Dont be surprised to see some setbacks and ups and downs with your recovery phase. Many of us faced significant fatigue which made recovery seem to go so slowly.

Talk with your doc about using Allegra and Mucinex to help with the thick gunk. Those meds can make dry mouth worse so you may need to take something different.

Best wishes with your continued recovery!!!


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
Joined: Jan 2016
Posts: 55
OES Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jan 2016
Posts: 55
Thank You Christine, you have been very helpful with the process, I very much appreciate the support you and several others on this site have provided.

Once the allergy season slows down I should be able to be done with the Alegra. My wife has been on me about the intake, I am really tired of the scanda shakes at this point. I think more of my fatigue comes from waking up every two hours to deal with dry mouth and use the bathroom from all the water I drink. I get up early and can not stay up too late although I try .

I just spent two weeks in Poland, Germany and Switzerland, next week will be California and Vancouver. Early July will be back to Italy and Germany and August will be the UK with several domestic trips. Just happy to be getting back to work.

Leonard


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Joined: Jun 2007
Posts: 10,507
Likes: 2
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 2
You're welcome, Leonard! I try to help as much as I can. Im glad I was able to help you with useful info and support.

Some patients have found success with the nighttime dry mouth with a type of lozenge that sticks to the inside of your mouth and slowly releases its medicine overnight making dry mouth less of an issue. Ive tried it and didnt care for it but many other have said it works great so maybe its worth looking into? Sorry, I cant remember the name of it but here in the US, its over the counter. Maybe ask a pharmacist, they would probably know the name of it.

Getting back to work is a huge accomplishment. Congrats on reaching the point in your recovery where you can assume some of your life's normalcy. You must do something very interesting for it to involve so much traveling. On the countries you named, Ive been to only California, Vancouver and Italy and enjoyed every one of them. Hope you do as well. Dont be too hard on yourself, you still have a long way to go until you are completely recovered. You will still see many more improvements.

Best wishes and safe travels smile


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
Joined: Mar 2015
Posts: 55
PJE Offline
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Mar 2015
Posts: 55
The tablet Christine mentions is XyliMelts. I've only been able to find them at Amazon. They're not a panacea, but help me a bit. I use them on the main treatment side where the salivary glands were most damaged, at time when dry mouth is not letting me sleep well. During the day I get the same results with Trident gum with xylitol.


Peter, age 62 at Dx
3/27/15 Dx T2N2aM0 Tonsilar P16+ G3 SCC
4/6/15 Full PET clear except for above
4/24/15 TOLM tonsillectomy/clear margins. Neck dissection 20 nodes (1 w/cancer & extracapsular extension)
5/28/15 PEG in
5/27 - 7/10/15 Daily Radiation to 66 units cumulative; Cisplatin weekly X 7
8/24/15 PEG out
9/24/15 Full body PET - N.E.D.
12/22/15 CT and physical exam. Continued clear.
3/11/16 Physical exam. Continued clear.
7/12/16 One year post-treatment! CT clear.
7/7/17 2 years post - still clear
Joined: Jun 2007
Posts: 10,507
Likes: 2
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 2
Sleeping with a humidifier helps too.


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
Joined: Jan 2016
Posts: 55
OES Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jan 2016
Posts: 55
I'm Still here.
It has been fourteen months since my last treatment. One year from now that I was just getting past the worst of the impact from the treatments. The gunk in my mouth was just subsiding. How am I now ? I have dry mouth and I hate it, it is all the way in the back of my throat.

Today I had another three month follow up visit, I am cancer free. I am traveling for work again, since the treatments have been done I have been to the UK 3 times, Italy 4 times, Germany and Switzerland 5 times, Poland 2 times, Canada twice, Japan, China, Hong Kong, Philippines. California, Tennessee, South and North Carolina, Florida and Arizona. I know there are varying degrees of Cancer and not all will be as fortunate as I have been. What was my secrete, I had a great support system and I was not going to let this get the best of me. I focused on wanting to get back to normal which I now I understand is the new normal. During my treatments I had acupuncture 3 times a week, I only took Children's Tylenol and a liquid version of Mucinex. I also had the Scopolamine patch which helped with the mucous buildup. We are all different in the severity and treatments we go through, it wont be easy, get the calories in using milkshakes with protein, another trick I used, I wold mix it up and drink warm water to wash the taste of what I began to hate in those milkshakes, it was soothing to my throat. I used honey from new Zealand when my throat got raw. I never needed a feeding tube although it was threatened a couple of times. Again your process will most likely be different than mine, I was told yesterday I came through this better than anyone they had ever seen come through it so early. I hope my post and information as i went through all of it helps someone else, it gets rough but I am proof it gets better.

Thank you to all who have shared their stories and advice in these forums you helped me also I hope I can do the same for others.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Joined: Apr 2017
Posts: 81
Likes: 1
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 81
Likes: 1
Thank you for sharing what worked for you. Glad you are doing well!


Keep fighting friends!

Me -- currently 53 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
2nd MRI clear 10/17/2018!
Joined: Jun 2007
Posts: 10,507
Likes: 2
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 2
Hi Leonard!

Thanks for coming back to give us an update! Its great news to see you are so active at one year post rads and chemo. You must be doing very well to be able to travel so extensively for work. I always love to see patients who have been thru this come back and post updates. It gives those just starting out hope they too can get thru it. I know its not easy but it sounds to me like you were motivated and pushed your self with your intake. Thats what helped get you thru it easier than many others.

Hang in there with the dry mouth. It does improve slightly here and there right up until around the 2 year mark. A few patients mentioned their dry mouth got better even 2.5 years post rads so you still should see some improvement with it.

Best wishes for many, many more happy and healthy anniversaries ahead.


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
Joined: Jan 2016
Posts: 55
OES Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jan 2016
Posts: 55
Thank You Christine, good to know the dry mouth can still improve. You get so many conflicting reports, I was told recently at the one year mark you are at your new norm. I came back exactly for the reason you stated, I wanted others to know it can get better. I have also been sharing my story of early discovery and perseverance to a proper diagnoses. One ENT told me I had post nasal drip. It is so surreal to sit here and think just 14 months ago I was suffering and wondering when the gunk in my mouth was ever going to end.

Thank You again.

Leonard



Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Joined: Jul 2012
Posts: 3,267
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
I can say that dry mouth, at least in my case, can improve after 2 years, even 5 and longer! My parotid on the left side is atrophied as seen on scan, but there is another on the right, although I was radiated bilaterally, the right was a lesser amount. Plus there are pairs of the two other major salivary glands on each side of the throat, plus hundreds of minor salivary glands in the mouth and throat. Lately, they're trying to avoid or limit the dose so they can recover, usually 26-30Gy, and volume to around 49%, if I recall correctly, to the parotid gland, which has more thin saliva, and reason for the thick mucus after treatment until it recovers or the others start producing more to compensate for the loss. The two others have a mixture of thick and thin, although more is thin.

IMRT was developed to help with the salivary gland dysfunction, so IMRT can can be dose sparing, and dose paint areas to be radiated to limit toxicities.

Btw, my first induction chemo, which I had alone, had just as worse side effects as radiation did, so chemo effects dry mouth too, but in my case, it may be difficult to give more of an exact timeline being I had more that one treatment, and medications, temperature/weather, foods, sleep habit, and medical medical conditions can effect dry mouth, especually st night from sleeping with the mouth open, and when the salivary glands basically shut down from what I understand. As Christine often says, correct what's within your control.


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






Page 10 of 11 1 2 8 9 10 11

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,852
Newest Members
MLowery, Josie, marywendy, Teri, Jyn
12,942 Registered Users
Forum Statistics
Forums23
Topics18,079
Posts196,430
Members12,942
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2021 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5