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9 Radiation Treatments down, 21 To Go #197674
12-06-2018 07:01 PM
12-06-2018 07:01 PM
Joined: Sep 2018
Posts: 18
VirgoMomof3Boys Offline OP
VirgoMomof3Boys  Offline OP

Joined: Sep 2018
Posts: 18
Ok so I'm almost through week two of radiation and I have a constant salty taste in my mouth. My sense of taste is going downhill fast I'd say! I can still taste liquids a lot easier than actual food so that's bizarre but I'll take it while it lasts. My question is, how long after my rad treatments does the sense of taste come back for you? I realize everyone is different. Also, will I absolutely be in the all out agony and pain that I've been prepared to expect? I realize doctors try to prepare you for the worst, I just wonder if the worst is the 'norm' or the exception.

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
Starting radiation in November 2018

Re: 9 Radiation Treatments down, 21 To Go [Re: VirgoMomof3Boys] #197677
12-07-2018 05:45 AM
12-07-2018 05:45 AM
Joined: Jun 2007
Posts: 10,189
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

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

Joined: Jun 2007
Posts: 10,189
Most patients begin to get their sense of taste back 6-8 weeks (often longer) after finishing rads. I also had the salty taste and it was horrible. Even water tasted overly salty to me.

After being part of this community and reading every single post for the last 11 1/2 years, Ive picked up a few things. The better patients do with their intake, the better they fare overall and less side effects bother them. I was one who struggled almost right from the start with not being able to eat very well and losing weight. Since I could stand to drop a few pounds I was not concerned about losing weight and had no idea of the major complications it was a sign of. When losing weight patients are also losing muscle which is next to impossible to rebuild. Do yourself a huge favor and no matter if you are average sized or 100 pounds overweight.... pay close attention to your weight and intake during rads and recovery. Every single day you need a minimum of 2500 calories and 48-64 oz of water.... every single day!!! This needs to be your goal until at the very least you have hit you one year post rads mark. It takes 2 full years for a complete recovery so many patients need the increased calories and water longer. Just please be much more informed than I had been and watch every single thing that goes into your mouth an d count each calorie. It really is that important!!! If you notice you are losing weight taking in 2500 calories every day, up it to 3000 or even 3500 daily calories. For most OC patients, even 4000 daily calories arent too much as their bodies are working overtime burning up calories at an incredible rate trying to fight the cancer and rebuild the damage its caused and the effects from rads. If you find swallowing becomes a challenge, ask your doc about getting extra hydration to help you avoid becoming dehydrated. You need a prescription to get a couple bags of extra fluid but boy does it help to make you feel so much better!!! Drinking water is especially important if getting chemo and you need to flush that poison out of your system. Nurses will usually give extra fluids when getting your chemo dose but still push yourself to drink even more.

Most patients we see start to really struggle towards the last 2 weeks of rads. If you have gotten to 2 weeks left and havent been hit with debilitating side effects you might be one of the lucky few who sail right thru it. Ive noticed those lucky patients are the ones who have done the very best with their daily intake. Just remember rads is cumulative! Patients undergoing rads will feel progressively worse the longer they're doing rads. In fact, rads continues to work even weeks after finishing rad treatments. Dont be surprised if the first 2-3 weeks of recovery you are still feeling bad as it takes a few weeks before most will begin to feel slightly better.

As a mom of 3, you already have your hands full. Pay attention to what you do every day that uses up your energy. Things as simple as sit when you can stand and taking breaks to rest during the day can help make a difference in how well you do.

Take it one day at a time and have small daily goals to help get you thru to the finish line. Hang in there!!!

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

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