Previous Thread
Next Thread
Print Thread
#192391 05-19-2016 08:39 AM
Joined: Apr 2016
Posts: 13
punkin Offline OP
Member
OP Offline
Member

Joined: Apr 2016
Posts: 13
I have had 5 days of radiation and 1 chemo treatment in my first week. I have oropharyngeal cancer. My mouth is beginning to get dry and I am trying some Biotene which helps a great deal. The 2 days after the chemo I have had diarrhea and episodes of hiccups. I knew the diarrhea could happen but the hiccups were a surprise. I still have an appetite but noticed my desire for coffee is gone. I know it will get much worse and am trying to get many things done before it sets in. the fatigue is a big factor after treatments. I am just trying to take it one day at a time. Suzanne

Last edited by punkin; 05-19-2016 08:44 AM.

Suzanne B 62 non-smoker
04/07/2015 Excision of left tonsil with surrounding tissue
04/11/2015 Biopsy results SCC of Tonsil HPV16
04/23/2016 New diagnosis oropharyngeal cancer
05/12/2016 Radiation begins each weekday X 7 weeks
05/17/2016 Chemotherapy start
07/01/2016 treatments complete
Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
Suzanne, thanks for posting this. You sound like a courageous person and I'm sure you'll get through this demanding course of treatment. I didn't have chemo but found that the radiation treatments just about knocked me out. So the fatigue is normal.

I'm sure Christine will weigh in shortly with tons of good advice - she's the expert around here. I recall various medications for dry mouth in addition to Biotene, some of which were prescription only. So do ask your nurses for recommendations.

As Christine will detail, try your best to get as much nutrition and especially fluids in. That's key not just to the treatment but to feeling better. Glad you still have an appetite... keep it up!

We're here to help in any way we can, so never hesitate to ask.

My thoughts are with you.


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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: Mar 2015
Posts: 55
PJE Offline
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Mar 2015
Posts: 55
Hi Suzanne. For the dry mouth symptoms, I found chewing xylitol-sweetened gum really helped - all the way through treatments. Trident was my brand of choice. It is habit-forming though, because I still chew it. Of course I still have a dry mouth, so.... grin

Careful if you have a dog, though, because xylitol is poisonous to them.

At night you might try Xylimelts tabs. One of these between your cheek and gum lasts for a couple of hours of blessed relief and sleep. I get them on Amazon - haven't found another source.


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: Oct 2013
Posts: 559
Likes: 1
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2013
Posts: 559
Likes: 1
One day at a time is the only way to take this. When things get really bad, just reduce your time frame -- ie all I have to do is get through today. If that's too long, get through the next hour. One hour victory soon becomes two, then three, eventually you get through the day and start over tomorrow.

I hope you are eating like there is no tomorrow while food still tastes edible. Christine has a 4000 calorie cancer shake she recommends. So try to gain weight right now by eating ice cream, desserts, everything fattening you can find.

If you don't there will be days where you lose a whole pound of weight in one day. None of us can afford too many of those days. Over my six weeks of treatment I lost 42 pounds.

Sorry about the coffee; that's one thing I never lost my desire for; though I did lose my desire for just about everything else. I did survive on Ensure for weeks; it was one of the only things that didn't taste terrible.


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Apr 2016
Posts: 13
punkin Offline OP
Member
OP Offline
Member

Joined: Apr 2016
Posts: 13
I've had my second chemo treatment and at the end of the second week of radiation. Mouth is very sore and throat is very painful. I am still eating although have lost my taste especially for salt. The chemo increases the pain and digestive problems. I know it is gonna get worse. Finding it hard to work so I am winding things up for now and hopefully will get extended leave. It's very tough. marking the days off my little calendar.


Suzanne B 62 non-smoker
04/07/2015 Excision of left tonsil with surrounding tissue
04/11/2015 Biopsy results SCC of Tonsil HPV16
04/23/2016 New diagnosis oropharyngeal cancer
05/12/2016 Radiation begins each weekday X 7 weeks
05/17/2016 Chemotherapy start
07/01/2016 treatments complete
Joined: Jun 2007
Posts: 10,507
Likes: 6
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: 6
Hang in there, punkin! You have us to lean on for support. We will help you get thru the rough parts of treatments and thru your recovery.

Best thing I can tell you is no matter what, keep eating and drinking. Even taking small sips of water thru out the day will help make your swallowing reflex active so it doesnt "forget" how to function.

Focus on what is within your control... your intake and pain management. Your daily intake must be the very most important thing to pay attention to. Every single day thru rads and for at least the first year post rads you need to take in a bare minimum of 2500 calories and 48-64 oz of water. If you are struggling with water intake, ask your doc to write you a prescription to get extra hydration a few times a week in the chemo lab. It will help you to magically feel a little better right after you get a couple bags of fluids. Plus when getting chemo you need those fluids to help flush all that poison out of your system so try extra hard on chemo day and the day after to push your water intake. As far as calories, if you can push to take in 3000 or even 3500 calories it will only help make everything easier. This must be something you do every single day without skimping as you only are hurting yourself and skimping here and there quickly becomes a bad habit turning it into the norm rather than the exception. Im speaking from experience as Ive done this myself and been admitted to the hospital several times for dehydration and malnutrition. Im hoping you avoid the pitfalls I encountered by listening to my advice. Ive nagged many members over the years and found the ones who "know better" end up just like I did... in the hospital feeling terrible.

As far as your pain goes, make sure you relay this to your doctor. Being in pain only makes treatments more difficult. The fentanyl patch works great for pain, many of us have used it. Fentanyl is the strongest pain medication there is. Its very simple to use since you only have to put a new patch on a different spot every 3 days. Just be sure to always follow the directions by never bending, folding, cutting, tearing, ripping or otherwise damaging the patch. Avoid long hot baths or showers while wearing the patch too. But that should also be done if your neck has the open weeping sores from rads.

Many OC patients going thru rads use some type of cream or lotion on their "sunburned" skin. If you havent started patting the cream on yet then you may want to start using it now. I used a prescription called beta-val cream. Others have found aquaphor works or many other over the counter creams or ointments. Just never put it on prior to going to rads as it could interfere with your treatments. Make sure whatever you put on your sensitive skin that you pat it on and never rub it in. Allow it to soak in on its own, reapplying several times per day. If your skin begins to have weeping sores thats completely normal, I had them too. At that point continue gently patting on the ointment and place a nonstick piece of gauze on the wound. Dont tape it on as it will only make things worse when it has to be removed.

Try rinsing your mouth a few times a day with 1 cup warm water, 1 tsp baking soda and 1 tsp salt. Swish this mixture in your mouth for at least 30 seconds, 4 times a day. This should help your mouth sores. You can also add an ounce or two of non-alcohol mouthwash with warm water in a waterpik on its lowest setting. That will help to keep between your teeth clean and later help with the thick gunky mucous.

Sorry to overload you with info!!! Im just trying to help you get thru this easier. Hang in there and stop back often to give us updates.


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: Oct 2006
Posts: 383
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Oct 2006
Posts: 383
Hey, if you're a coffee freak like me you will take comfort in knowing that your taste for coffee should come back to you! I was about five weeks into chemo and one morning all of a sudden my coffee tasted like MUD!!!!! One of my doctors admins told me she had an Uncle that went through the same thing (A different type of cancer) and after he got treatments finished up he got the urge back and the taste of coffee went right back to appealing. Coffee can work against you as far as hydration right now anyway so it may be a silver lining.

Christine offers up some great comments and advice. We're all here for on another! Prayers and all my best!


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

Joined: Nov 2014
Posts: 66
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Nov 2014
Posts: 66
Now is a good time to catch up on your TV shows and books on tape. There are many good series out there to take you mind off of things for a time.

Keep up with the soda and salt gargles. Try and take a little walk every day.


HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
Joined: Aug 2016
Posts: 11
Member
Offline
Member

Joined: Aug 2016
Posts: 11
I read your posts and wondering how you're doing. How is it going for you?


Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,924
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5