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#194700 06-21-2017 04:30 PM
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Just finished the second treatment, and I don't know if this is perhaps a psychological thing or physical, but has anyone else experienced tingling and some mild discomfort after just 2 sessions? Frankly, it could be psychological...as I am prone to excessive worry and anxiety. smirk I know that there will be side effects and every one is different, but am I over reacting? When do the effects of radiation begin to surface? Ive read that most people start feeling "pretty" bad after the 3rd week, but that's a loose description. Could anyone elaborate? Thanks gang.


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor
05/08/17 Cancer still present
05/10/17 2nd surgery-
06/05/17 PET on 6th, RADS start on 06/20/17
07/11/17 Halfway point!
08/01/17 Last treatment
11/1/17 Cancer is back
11/15/17 Emory University surgery. neck dissection, left lymph nodes removed, tongue free flap from left arm with skin graft.
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I have heard it can happen in some people, probably a minority, who can have an immediate effect with radiation even after the first dosage. Everyone is different, and like you, I too felt a light tingling in the back of my throat, after the first or second treatment, and thought it was odd, and different from what I read and was told, but overall, it took about two weeks or 10 sessions for some of the notable side effects, skin redness, swallow difficulty..., to start kicking in, and increase in severity until a few weeks after treatment ended.


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
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Wendy, some patient will notice some side effects right from the start of their radiation treatments. Its not very common for patients to experience issues from the very beginning of rads. Most patients will begin to notice the change in their sense of taste and some minor discomfort around weeks 2 or 3. By the time patients hit their 5th week most patients will definitely feel the effects of rads. Since radiation is cumulative, patients will feel worse the further into their treatments they go. The very worst of this whole thing is when treatments have finished. The first 2-3 weeks post rads are the most difficult, its when the body is trying to adjust and radiation is continuing to work even though treatments have stopped. But then you have the lucky 10% or so of patients who barely feel any side effects and they sail right thru everything. Ive watched hundreds go thru this over the years and figured out what the patients with the least amount of side effects do differently than most.. Ive noticed the patients who are the most focused on their intake are the ones who have the easiest time of it. By focusing on what is within your control you will do better at hitting your daily minimums of 2500 calories and 48-64 oz. Those are the bare minimum numbers, if you can push and do more every day then that will only help you by getting thru it easier.

Hang in there!!! Rads is not easy, not easy at all!!! Were here to lean on if you need us. Best wishes!!!



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: Apr 2017
Posts: 61
Supporting Member (50+ posts)
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Joined: Apr 2017
Posts: 61
Thanks Christine. Trying to stay awake long enough to get my liquids in today. Getting the calories is harder than it seems that.


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor
05/08/17 Cancer still present
05/10/17 2nd surgery-
06/05/17 PET on 6th, RADS start on 06/20/17
07/11/17 Halfway point!
08/01/17 Last treatment
11/1/17 Cancer is back
11/15/17 Emory University surgery. neck dissection, left lymph nodes removed, tongue free flap from left arm with skin graft.
Joined: Apr 2017
Posts: 61
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 61
Thanks Paul and Christine. Trying to stay awake long enough to get my liquids in today. Getting the calories is harder than it seems that. Im most likely making more of it than it really is.


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor
05/08/17 Cancer still present
05/10/17 2nd surgery-
06/05/17 PET on 6th, RADS start on 06/20/17
07/11/17 Halfway point!
08/01/17 Last treatment
11/1/17 Cancer is back
11/15/17 Emory University surgery. neck dissection, left lymph nodes removed, tongue free flap from left arm with skin graft.
Joined: Nov 2016
Posts: 59
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Nov 2016
Posts: 59
Hi Wendy--
hang in there.. rest, drink, rest, drink, rest, drink....
this is the time for you to dedicate to this process( not easy at all!!) and do whatever you must do to keep up your calories, rest up, and find some joy in each day.


My husband did not feel the more dramatic effects of RADS until about the 2 week mark and at the point he did notice it. He used a clay heat/ice pack ALOT everyday from that day forward; moderating the heat vs ice depending on what felt better for him for the remainder of the many weeks to come.

you may find that helpful with the tingling you are experiencing

to be cautious though, the skin that is being irradiated will become tender and fragile. So, if you use ice packs of any kind, it must be covered with protective soft non adhesive material.. the clay packs worked well for him as it is freezer friendly or microwaveable with a soft cloth coating and a Velcro strip. he literally would wrap it around his neck and secure it with the Velcro sort of like a neck brace.

sending you strength and good energy as you go through your treatment.


MrsW
Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
Joined: Apr 2017
Posts: 61
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Posts: 61
Thanks MrsW, I may try that.

I talked to my nurse Friday after my 4th treatment, she advised me to stop taking my anxiety medicine, Lexapro, as it was drugging me out too much. I was sleeping 12-15 hrs a day...and was nauseous the whole time. She also thinks that I may be really sensitive to the rads, as im already starting to get the side effects.

Its been 5 days since I started, the tingling\mild burning sensation on my tongue is present, as well as decreased saliva and loss of taste, which is causing me to not want to eat. (My family is forcing me to..lol). Right now all i can taste is general salty or sweet flavors. Im dealing with thrush again. So...all in all ....Yay! Im reminded to be careful what you wish for.....I kept remarking that waiting for everything to happen was the worst...well, I dont have to wait any longer.


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor
05/08/17 Cancer still present
05/10/17 2nd surgery-
06/05/17 PET on 6th, RADS start on 06/20/17
07/11/17 Halfway point!
08/01/17 Last treatment
11/1/17 Cancer is back
11/15/17 Emory University surgery. neck dissection, left lymph nodes removed, tongue free flap from left arm with skin graft.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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If you havent already gotten a waterpik, Id recommend picking one up. Use it when brushing teeth (should be at least 2x a day). You will be very surprised at how much can get stuck between your teeth when eating! The waterpik (use it on its lowest setting) will get in between teeth better than even dental floss can and your mouth will feel nice a clean. Use warm water with a couple teaspoons of non-alcohol mouthwash mixed in. I had prescription mouthrinse, peridex that I would add to the warm water. Thrush is horrible!!! That could be why you are experiencing loss of taste and pain already.

Before stopping any medication you should first consult your physician. Nurses are really great usually with most things but they are NOT doctors Your doc might have something else that you could take or give you a smaller dose. With one week down you have many more treatments and recovery to get thru where you may want anxiety meds to help get you thru.

The better you do with your intake the less the side effects will bother you. Every single day you should take in at the very least 2500 calories and 48-64 oz of water. If you can get 3000 calories thats even better. As far as the nausea goes, it could be thrush related or could be a million other things. Are you having chemo? Im sorry I dont remember and didnt see it in your signature. The patients without chemo usually have a much easier time than the ones who get chemo (especially if they are hitting their daily numbers). Those are the patients I see who sail right thru with barely a scratchy throat.

Hang in there, one week down and close to being cancer free 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: Apr 2017
Posts: 61
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 61
Thanks Christine. I saw the doc today. He said everything seems to be what is expected with radiation, just getting it a little sooner than normal. He advised me to do the baking soda rinses at least 3x a day and if it doesnt get better he will prescribe something.

I havent got a water pik yet, but am planning to. Since stopping the Lexapro, I have been tryimg to eat more, although its hurting now.

Onward and upward!!!!


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor
05/08/17 Cancer still present
05/10/17 2nd surgery-
06/05/17 PET on 6th, RADS start on 06/20/17
07/11/17 Halfway point!
08/01/17 Last treatment
11/1/17 Cancer is back
11/15/17 Emory University surgery. neck dissection, left lymph nodes removed, tongue free flap from left arm with skin graft.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Ive been there and boy do I feel for you going thru this, especially not that long since your surgery. I know its not easy to eat at least 2500 calories every single day but it really will help make this as easy on you as it can be. Your first warning sign that what you are currently doing is not working is if you begin to lose weight. If you lose anything more than 2 pounds in a week I want you to immediately take steps to turn it around and for that day on take in at least 3000 calories, if you can push yourself to do 3500 calories then thats so much better. Skipping a day of counting calories or skimping and only doing say 1200 calories are both very bad habits to begin. It might seem at the time like its ok to mess up here and there but before you know it, that becomes the norm and its a rarity to get enough calories. Ive seen hundreds of patients over the years go thru this and the ones who listen the best to what I tell them about their intake are the ones who have the easiest time of it.

I want to tell you why I bug everyone about their intake so much. I was a bit chubby prior to starting rads but over a short 2 month stint of rads I dropped 65 pounds. Losing weight like that even if you are obese is NOT good!!! It means you are losing muscle right along with the fat and you will quickly lose your strength and endurance, besides being very unhealthy. I felt horrible!!! That sudden dramatic weight loss did other things too. I was malnourished and dehydrated which put me in the hospital a few times which I was very upset about. Nobody likes being there but I was especially miserable knowing it was my own fault for not eating enough. When the going gets tough, drink your calories. I used to drink yoo-hoo and huge chocolate peanut butter milkshakes that were loaded with calories. Do the best you can to eat a balanced diet but bottom line is calories are the focus more than a well rounded diet.

When it becomes difficult to overcome your pain even for a short time so you can eat then its time to talk to your doc about prescription meds. Theres magic mouthwash to swish around in your mouth and spit out. Theres several variations but they all will temporarily numb your mouth for about 15-20 minutes so you can eat more comfortably. You may also need something to help you sleep, something for diarrhea or constipation, and if you become nervous or depressed an anxiety medication wouldnt hurt. Im glad you saw your doc today. Did you get a chance to talk about if you should continue with a smaller dose of the lexapro? Dont be afraid to ask for pain meds if you feel over the counter things arent working. Most OC patients going thru rads will at some point need some strong pain meds. Many will use the fentanyl patch to help maintain a steady level of medicine so you avoid the ups and downs of pain by constantly taking pain meds.

I almost forgot to tell you about getting extra hydration if you are struggling to taking in enough water daily (48-64 oz). Your doc will have to write an open prescription so you can go on days you cant push yourself to drink enough. Some patients go 3x a week. When I would get a couple bags of fluids, I always came out of there feeling great. Maybe this would help to perk you up?

Never forget you have all of us in your corner cheering you on 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
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