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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






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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
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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
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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.
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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!
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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
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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
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Posts: 61
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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
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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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For what it is worth my Stanford doc had me doing baking soda/salt rinsed 6x/day from the start. Also before and after every meal.

I am on a pretty high dose of Gabapentin and it seems to help.


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: Oct 2012
Posts: 1,275
Likes: 7
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The saline solution will definitely help with healing. I used to do saline soaks for my husband when the skin on his neck started to break down. The more diligent one kept at it, the more quickly the skin healed.

Gabapentin will help but do remember you will have to step down when you decide that you don't need it anymore. Don't just go cold turkey.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Great point on the gabapentin,Gmcraft. The doctors have mentioned they will need to step me down.


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: Apr 2017
Posts: 61
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Great point everyone. Im doing my best. Overnight I lost my sense of taste. It had been touchy for a few days, but i still tasted some things. So eating this morning was unusual and unpleasant. It was both a wonder and disappointment trying different things to see if it tasted any different. I went through a whole refrigerator full of condiments and foods, to no avail. Everything is now texture, but no flavor. I dont know why, but this actually made me cry. My brain knows its temporary, but for some weird reason this is what broke the camel's back, so to speak. I just couldnt bring myself to eat, what essentially tastes like cardboard...so I drank my protein drink instead.

At my treatment this morning, talking with a group of fellow cancer patients...we all shared similar trials and tribulations. At least, i know im not the only one experiencing early problems. We all kind of laughed (perhaps a bit sarcastically) at the ...you dont feel the effects til about the third week,so you shouldnt be feeling this way...statement we had heard from the nurses and doctors. The dry mouth, thick saliva, and gum pain from the flouride treatments have also begun, with ongoing fatigue and nausea, and did I mention skin problems? But! Hey! Its manageable. I can still function and move about, so all is still good in the world.

Anyway....just giving a checkin. Im doing fine.


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
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Im so very sorry to read your sense of taste has disappeared already. Keep trying different things at different times over the next few days. You never know, something may still have a slight flavor. Most of us had our taste gradually change and it didnt happen so soon into our treatments. The old "everybodys different" really rings true with what you are going thru. Just remember, the better you do with your intake and hitting those numbers of at least 2500 calories and 48-64 oz of water every day, the easier all this will be. And yes I do know its easier said than done. I have faith in you and will be with you every step of the way. you can lean on me when you need to.


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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Posts: 81
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Wendy, I have lost my sense of taste too. It happened around day 12/13 for me. Just texture as you said. Still have some appetite but eating is weird.

The worst for me is that water tastes salty. I have a sodastream at home and can still drink unflavored carbonated water - it doesn't taste salty for some reason. At some point may not be able to drink carbonated water but hoping that is not soon.

I have started trying different things as Christine said - potatoes are great (as they are mostly texture) as well as avocado. Easy to swallow!

So sorry you are experiencing this early.
Stef


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: Apr 2017
Posts: 61
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At least I still have my sense if humor!

Update: July 3rd. 11th treatment completed. I was feeling good for the better part of that day. I didnt eat much, but i did eat normal. Certainly didnt make it to the 2500 calorie mark. I was looking forward to the 4th, eating barbeque and sitting in the pool "under the shade of course" . However, that night..all went downhill. I developed some pretty severe welts on the inside of my mouth, as well as the "microwaved chicken tongue". I felt firmness earlier, but i didnt look to see what was causing it, but as the night progressed, my mouth went into defense. I couldnt complete my flouride treatment, I couldnt sleep or eat without pain, and since the good ole doc didnt prescribe anthing but oral lidocaine, i was suffering. So the 4th of July this year was miserable. Eating apple sauce and boost shakes , and ice cream when it doesn't burn my mouth for being too cold.

Today , July 5th. 12 th treatment. I told the nurse and doc about my crazy train. They did not look too surprised nor worried, as this will be the new norm for me during the rest of the treatment. I was prescribed Norco 10mg Hydrocodone -325mg tylenol. A fruity flavored flouride (that i can now tell you taste and smells like a child's vomit after too much sugar candy.) ,Its brutal, but honest! Avoid at all costs! My lips may just have to burn. Oh and a new and wonderful , yet not wonderful addition to my list of ailments. Bleeding gums! What fun am I having! Im trying to hold on people...but the trying to eat, drink, be careful of the sun, excerise your mouth or you will get locked up, normal daily life has been taking its toll. Im doing what i can to eat and drink. And im down 2.4 pounds in 2 days. And im pretty sure tomorrow will be a little more lost. Im having more trouble keeping what i have now, than i ever thought possible. Im going to sleep now, and i pray good things happen in the night.

Last edited by WendyinGa; 07-05-2017 06:34 PM.

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: Feb 2017
Posts: 67
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We eventually got liquid forms of every med and put them in the PEG tube. He finally got to where he could not swallow his pain or any other meds.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
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Wendy,
Can you take gabapentin? I take 900mg 3x a day and rarely need to take hydrocodone (maybe once or twice a week.) You may want to ask about it.

Are you rinsing with salt/baking soda solution? That is supposed to help reduce the incidence of mouth sores.

I just finished treatment 16 today and have 17 & 18 tomorrow (to catch up for the day lost on 7/4.)

The doctor told me to switch to soft foods today and that it will be 6 months to a year before I can have spicy foods. A little sad about that as I wanted to have Indian food for my soft food - despite not being able to taste anything!

I am so sorry you have all these side effects. Hang in there! Vent here anytime. I occasionally have a cry as well; I think it's good to let the stress out.

Stef


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: Sep 2006
Posts: 1,357
Likes: 5
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There is no Gold Star for not taking painkillers. Take all you can whenever you can. End of that story!


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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I'll ask about the gabapentin in the morning. Hydrocodone is working but the constipation is a problem with it.

Another thing is the hair loss, which I did not think was going to happen, but ive been losing quite a bit the last 3 days. I have asian long hair, so i can see the bundles of strands just pulling out brushing..its become my new obsession and depression. Anyone else have hair loss? Please tell me that it was minor and not overall hair loss. Just venting. It will grow back, is my mantra.

Also, update on food. Now I'm on liquid/slimy/pudding like texture foods. No spicy foods at all. Which is weird. I can't taste them anyway, but they can burn like a volcano. I'm Korean, so I found out that I can eat seaweed soup, and strangely enough, cereal with milk is ok. Anything in the pudding and ice cream family is tolerated. But cannot eat mashed potatoes or Mac n cheese? Strange to say the least. Have lost approximately 9 lbs this week. Full tally in the morning..to which the doctor will get mad with me for not eating enough, but even though I eat, too much and I vomit. I've got a lot of weight to play with as I was 267 lbs when I began, now as of last Friday I'm 248. So they are not too concerted with loss, so much as getting enough nutrients and liquid.

Still here and now just sort of kicking!!


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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What type of chemo are you getting? If you have a couple minutes it would be a huge help if you updated your signature. As far as hair loss... cisplatin and carboplatin arent supposed to cause hair loss. The only hair loss you should notice is a small round spot on the back of your head where the radiation beam exits. Mine was about the size of a nickle but to me it seemed more like a half dollar sized. It takes a while but that hair will eventually grow back in. If you are getting Erbitux then yes you could have some hair loss. Hair loss could also be from malnutrition, so can kidney problems and many other negative side effects.

Eating dairy products usually are soothing to a sore mouth. The consistency and texture plays a huge role in weather you will be able to eat something or not, pudding is much easier to swallow than mashed potatoes. Almost every OC patient is not able to tolerate anything spicy, difficult to chew or dry. Try applesauce, canned peaches, yogurt, cottage cheese, scrambled eggs, cream soups for things that have a smoother texture and are easier to swallow. Right now its all about the calories. Seaweed soup may be ok for you to eat but if its not high in calories it could be contributing to your weight loss. You need to make every swallow count with the highest amount of calories per swallow. I'll post the link for easy to eat foods.

As far as weight loss goes... this is VITALLY IMPORTANT!!!! Your treatment staff should be more concerned about this! You are not just "losing weight", you are losing muscle too which is nearly impossible to ever get back. Read about cachexia, its muscle wasting that cancer patients who dont have adequate nutrition go thru. Im also enclosing another link showing the importance of your intake. Your body is burning up calories at an incredible rate right now. Its trying to fight the cancer and rebuild itself at the same time which takes a huge amount of calories every single day. Too often (myself included) we fall into the "make up" routine. Thinking its ok to not hit the minimum calories or short yourself on taking in enough water thinking you will "make it up" the next day. Well tomorrow's "make up" day will NEVER hapen as you are already many days behind and by now its impossible to every "make up" what you are short.

I havent discussed how important it is to take in at least 48-64 oz of water daily yet. If you arent meeting these numbers that will have further negative complications as well. Talk to your doc and ask for a prescription to get extra fluids a few times a week in the chemo lab. This will help to stave off dehydration and help to make you feel better. I always felt so much better when walking out after a couple bags of fluids.

I am a big nag to most patients about their daily minimum intake and for a very good reason. I suffered far greater than I had to because of losing 65 pounds in a short period of time. So far, you are right on target to follow in my footsteps and end up with some big problems. This needs to be turned around right away. I cant stress how important this is enough!!! I ended up hospitalized several times for malnutrition and dehydration which could have been avoided if I had done better with my intake. You can drink your calories far easier than eating them. I cant remember if you have a feeding tube or not but if you dont Im pretty sure you will end up with one in the near future. But by that time you will feel so much worse because of the malnutrition. You CAN turn this around!!!! Its not an option, it MUST happen or you will soon feel so bad you wont be able to walk even one block easily. One of my lowest days of my life was when I was so sick I could barley walk and my teenaged son dragged/carried me and put me into the car got a wheelchair at the hospital and pushed me into my oncologist doctors office (without an appointment). I looked so bad, I couldnt get myself dressed, comb my hair or even hold my head up, I was practically incoherent I was so sick. The front desk looked at me and immediately took me into a room so I didnt scare any of their patients in the waiting room. Anyway, one look at me (didnt even touch me to take my temp or blood pressure or even look into my mouth) and the doctor admitted me into the hospital for a week. That was the first time, others followed. PLEASE starting as soon as you read this.... go drink a boost or ensure and continue to drink at least 4 more every day this week. You can even get the store generic brand, just get whatever kind has the highest amount of calories and get them in you. Since your weight is spiraling down so quickly you should be taking in not just 2500 calories daily, you should be doing 3500-4000 or even more. No, its not too much!!!! I was taking in some days 7000+ during my recovery and I didnt gain an ounce. During rads and the first 6 months of so of recovery its rare for any patient with OC to gain weight. I know you can turn this around!!!! Its all about how badly you want to do it and if you can force yourself to follow along what Ive explained. Im not typing all this for nothing... Im trying to help you so you do not suffer like I did. I went thru hell and back and its due to not having a caregiver to help me with my feedings. You need to ask for help and if your medical staff isnt overly concerned about your weight loss then they are doing you a huge disservice. I can count the times Ive ever criticitized anyones medical team on one hand in the past 10 years. Its not something I do but hearing they "arent too concerned" about your weight loss sends up the red flag and makes me upset and afraid about the quality of care they are giving you. It doesnt matter if you weigh 600 pounds! Bottom lines is... you should NOT be losing weight so quickly while going thru rads for OC.

I know you feel horrible enough and I so wish you didnt have to go thru this. But how much you have to struggle is all in your hands as far as making your daily minimum numbers for calories and hydration. Its all about the calories so you want to get as many as possible, the highest number per swallow you can get. So I'll give you a break and stop my ranting. I think you got the point by now. Please review the links and I promise you that once you turn this around you will feel much better!!!!

Cachexia ---- muscle - weight loss during rads

List of Easy to Eat Foods


PS....
Here is a recipe for something I used to make and drink when I went thru treatments and recovery. The shake has anywhere from 1200-2000+ calories depending on how you make it. The list of foods above will help too, they mostly have a smoother texture and arent spicy which should be easier to tolerate.


(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder
(check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.


Livestrong - losing weight with chemo

Livestrong - Calorie Intake Importance

Diet and Nutrition during treatments





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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If you can tolerate dairy, try boosting your the calories with fortified milk. Here is the recipe


How to Make High-Calorie, High-Protein Shakes
Many of the following recipes call for protein-fortified milk. This is an important ingredient as it can add up to four grams of protein per serving and be used in milk-based recipes to increase caloric and protein content. They can usually be found in your grocer's dairy case alongside soy milk, almond milk, and other specialty milk products.

If you cannot find protein fortified milk at the grocery store, here is an easy way to make it at home:

Protein Fortified Milk Recipe
Ingredients:

1 quart whole milk or 2% milk
1 cup powdered non-fat dry milk
Blend milk and powdered milk together. Chill in refrigerator for 4-6 hours before consuming.​ Each one-cup serving of protein fortified milk contains 211 calories and 14 grams of protein.

This was suggested to us by our hospital. The trick, of course, is to boost the calorific value of every mouthful you take in.

As for the hair loss, Cisplatin causes some hair loss but it is insignificant. Our MO did say we might notice a bit of hair on the pillow in the morning, but it should cause all the hair to fall out. However, with Asian hair, it may be more noticeable because you can see it so much more clearly.

Christine is RIGHT about the dehydration. It really makes one feel so very sick. S


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Hi Christine. Actually no chemo. It's the radiation that is causing the hair loss. Strange...my cancer was on the left side of my tongue, but my hair loss is from the right side of my neckline. They said it shouldn't be much, but maybe I'm seeing things, but it's more than a little. It's ok, though....it will grow back. As far as eating goes. I'm desperately trying to eat some food. But I can only stomach about a cup of cereal with milk and protein shakes. Depressing, I lost another 5 lbs since Friday. Doctor is concerned and they will be paying closer attention to my eating and weight loss., bus as far as days go,,,, this day was not so bad. Thanks all.


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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Radiation does cause some hair to fall out in the area it exits the head. Most of us had a round patch near the base of our necks. If your diet isnt balanced that can cause hair loss too. It could be related to any number of things.

If you are still losing weight then its obvious the daily calories that are being taking in are not enough. I completely understand your limits with not being able to eat large amounts but you must change what is currently not working for you or you wont see any improvement. This is why every single swallow must count with the highest number of calories you can get. Drink your calories, try the calorie laden choc peanut butter shake I posted. I know this will change things if you make this every day, it has turned many members around who were having a hard time. I posted a very long detailed reply yesterday morning that took me almost 2 hours to write and post all the links. To turn this around you must follow what I detailed in that post, read everything including all the links. If you dont immediately change your current intake, this whole thing will be much harder on you than it has to be. Its not easy but you must push yourself to take in a little more at every sitting. Start by taking 2 more bites every time you think you are finished. Then the next day take 3 more bites and so on. You CAN do this and boost those calories but it takes work and real effort. Please take a few minutes to read and absorb everything I wrote. If you can follow what Ive outlined I know you will begin to feel a little better. Dont forget about the hydration part too. Also conserve your energy as much as you can, sit when you can stand, lay down when you can sit. This will help you to avoid burning any extra calories.

If you are starting to feel depressed (very common with OC patients) speak up and talk to your doc. Ask about any therapists there who counsel cancer patients. Its not easy being diagnosed with a potentially life threatening disease and treating it. You are going thru some huge changes in a very short amount of time. Many OC patients take anxiety meds to get thru the rough days. Plus if you are taking pain meds, that can further make you feel low. I know how hard this is for you, I had a very difficult time too.

Hang in there!!!


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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Posts: 61
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Im taking what you have given me to heart. I sat down and reorganized mySelf. Created a schedule to get myself on track with nutrition. Since im not able to digest solids. Ive gone to liquids and pudding mix. Im meeting with the nutritionist tomorrow, as i lost weight again. But ive gotten a lot of support and encouragement from everyone, thank you. Now i realize , i was not taking my nutrition needs as seriously as i should have. I have been warned by my nurses , docs, here on the forum, friends and family. Thank you again. I iust needed a kick in the pants, so to speak...to get myself motivated again.


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 also wanted to say...i guess more to myself. That its not about enjoying food anymore. I cant taste it anyway. Just get it inside myself, and let my body do the rest. ***I feel like my body hates food, right now.


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: Oct 2008
Posts: 246
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I can't believe that I forgot about making protein fortified milk. In addition, the powdered form can be sprinkled on other foods, yogurt, canned fruit, etc. Very helpful, easy, and inexpensive.


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
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Thanks Travelottie, I have incorporated the powder into my food. I have to say, that I'm getting the protein I need, just not enough calories, before I get too sick to take in more. I keep losing weight, even though I have increased my calories up to at least 2500, if not more. The shakes and yogurt are about the only thing Ive got now, as well as boost. **I read an article...What happens if you lose your sense of taste? the writer, basically covers what we go through when our taste is gone. A point, she made, is that she didn't lose all sense of taste, as there are taste buds elsewhere in the throat and esophagus. She found that some things she could sense. Certain essences that normal taste buds don't register. I have been experimenting, and yes there are some things. Peanuts, grapefruit, Seaweed (lol...its a korean thing)...but this "knowing" that there are "tastes" out there that I haven't paid attention to in the past are, perhaps what I can find pleasure in today.

The mouth sores that StefH has mentioned is pretty bad as well. I got a waterpik to help with hygiene, but found that it was way too strong in pressure. My fault, as I was trying to go cheap and got the cordless one on sale, it does not have pressure settings. Will be returning it tomorrow wink and getting the slightly more expensive one, but hopefully it wont bore a whole in my gums, like this one did. I cried.

I have lost a lot of hair in the back on my head, near the neckline. It comes out more everyday. Depressing, as my hair was very long. It's too late to cut it short, since I started treatments with a long braid. They were surprised that so much is coming out, but they explained that it is where the radiation is exiting.

I'm going to ask the Doctor tomorrow about getting some hydration. I'm just not getting enough. Water tastes like saltwater. Which they say may be a sign of dehydration, but its also part of losing taste and salivary glands, so I'm just guessing. I've dieted in the past, and drinking fluids has always been important, but until you have to drink a certain amount daily, you never know how difficult it can be.

***The waiting room in which the patients all sit in, waiting for treatment, has become pretty depressing. As, now, everyone is in some form or other of distress. I'm the only one with oral cancer, but there is a gentleman with throat cancer, as well. He is not doing well at all. His family is super supportive, and he is so nice. He is just so drained. I have mentioned to his family that this forum has been such a Godsend. I hope they took my advise.

I really don't want to go to treatments now, but I will. I am so grateful that this forum is here. I hope this doesn't come out wrong...but i'm so very thankful that I have the knowledge from so many that have gone through this before. Bless Everyone.


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: Feb 2017
Posts: 67
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Wendy, my husband is 12 weeks post treatment. I am guessing you do not have a PEG? We had a standing order for fluids and my husband had to use it multiple times. I cannot support what Christine says about fluids and nutrition enough. I will tell you that numerous rough days during treatment we had to return to a discussion about those two items. If you have 3 days of consistently meeting your intake goals, you will see some things improve I promise. Also, we have just discovered the joy of blending foods in the Vitamix. My husband survived treatment on VHC Boost we could only get from Amazon in our area. Just to give you some hope, today my husband ate three meals! So hang in there.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
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Thank you Sooner. I'm trying to get my nutrition in order. I was a bit lax in trying to keep up the calories and water intake, so i'm paying for it now. I haven't got the blended foods quite right...lol I must be not be doing something right. I don't have a vitamix, but i bought the ninja high end blender. It can get things silky smooth, but I still feel the grainy texture. I do mostly shakes, as it is hard to make a mistake.


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
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Update:. Need some help. Im getting so sick injesting anything today. Water or food doesnt matter. Should i ask for an iv? How long before i should consider the peg?


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: Feb 2017
Posts: 67
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I would really encourage you to get in contact with your treatment team ASAP. Dehydration and lack of adequate nutrition are extremely problematic. There are a lot of factors that need to be addressed in your situation. Make sure they understand the depth of the issue. My husband ended up in the ER even with a PEG because he could not meet his intake goals and developed very severe dehydration. I left him with my daughter sleeping peacefully and 20 minutes after I got to work, she called me and we were discussing if she needed to call an ambulance or if he could wait until I could get back home to take him to the hospital. I am not trying to scare you but just to be sure you realize you have to be serious about ensuring your intake is adequate. I am not blaming you. My husband was trying. There are just a lot of parts of your system out of whack. We learned to take advantage of fluids every time they were offered. We had standing orders for them as needed. I don't know if you are on chemo but my husband was and that was another complicating factor for him. I am not a doctor and can't comment on the timing of the PEG tube or if it is needed. My husband elected to have it placed before treatment started to avoid any possibility of an interruption to the treatment schedule. You are entering a difficult phase of the treatment cycle. You need to work with your treatment team to get a plan in place that will allow you to meet your intake goals for the rest of treatment. What Christine says about intake is all true. I am sorry you are having these struggles. Thanks for reaching out. Don't minimize things when you contact the team. You need help. His medication protocol had to be adjusted several times as his reaction to the treatments changed over time.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
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Wendy,

All that Sooner said is true. i would suggest to ask your doctor directly about a PEG. In my husband's case, he got his PEG in the third week of treatment. We were very thankful to have that to keep his intake at the right level. Even then, he became dehydrated and needed fluids.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Im so sorry you are going thru such a hard time!!!! I detest seeing anyone struggle. When a patient is unable to sustain themselves with enough calories and hydration they should have a feeding tube. I was concerned you would reach this point when you had so many issues so early in your treatments. With continued weight loss every time you were weighed it was only a matter of time before it caught up with you. Im very concerned about what you said about you cant take anything in. If you arent able to keep anything in your stomach, a feeding tube wont change that. Plus, it could be a week or 2 before you can get in to get a feeding tube surgically placed. You could end up with a faster option, the nasal tube. Thats quickly inserted and removed without surgery. Its more for patients who will only need it for a few weeks. Your doctor needs to assess you and determine if you need to have a regular feeding tube (peg) surgically placed or if you would be ok with the temporary nasal tube. You probably will need a consult with a gastro doc too.

If you are not able to take anything by mouth you need to speak up and talk to your treatment team. Tell them exactly whats happening and what you are going thru. Its very important to talk openly with your medical team so they can help you thru this. You may end up being hospitalized for malnutrition and/or dehydration. Both can cause some pretty serious issues and make you feel absolutely horrible. If you havent gotten a prescription for extra hydration yet that needs to happen immediately. Your treatment team needs to be on the ball and watch their patients closely, especially those who have continual weight loss. It doesnt matter if the patient is 150, 250 or even 650 pounds, they still should NOT be losing massive amounts of weight as it causes big problems in many ways including muscle loss, making the patient very weak. I posted many links that were loaded with important info about all of this in the post dated July 10th. Im very sorry to hear you are having all these problems. Your treatment team should always have doctors on call 24/7. Dont forget they work for you, its ok to call them even if its not regular business hours. If your condition is serious then you should be taken to the ER immediately. Your caregiver will need to determine something like that. Your caregiver can make the phone calls to your treatment team as long as you have given permission for them to speak with that person.

Wishing you all the very best and hoping you soon feel a little better. Please keep us posted on how you make out.


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
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Im thinking its pretty serious at this point. My body quivers just drinking water and swallowing food. A few minutes and im nauseous and have to throw up. Im taking Zolfram for the nausea, it helps somewhat, but the mucus also makes me gag as well, causing me to throw up from the reflex. I keep trying new things, but have to rely on boost, but even that is making me sick. I was never very tolerant of milk or dairy, and now its become an issue. Ive talked to my family...and seeing me today so sick and weak, they too think this might be for the best. I feel so bad for them, having to watch me be sick, refuse to eat and drink, out of fear of throwing up. The strain from it all has left my mouth raw and bloody. Im at my wits end. I have an older protective brother, who after seeing me get sick today, literally was telling me to stop treatments, saying its killing me. I told him im so close to finishing, but his point is that, it will do no good to finish , if im left sicker than when i started. So we all agreed to discuss the tube tomorrow. Im concerned as this doc, in the beginning, said he was strongly against the tube, but im down 30 lbs since this all began and losing a pound a day. Im getting weaker each day. Something needs to change. I was told by a family member that im not trying hard enough, and that if i wanted to eat and drink that i could. How can i argue with logic!? I keep telling them...im hungry and thirsty, but if it passes into my mouth and down my throat , it will make me sick. They say better to throw it up then, at least im eating. They are so scared of me not getting the nutrition i need that they are ignoring the fact that it also hurts me to get sick. Ughhhh. Pity party, over. ****I know im nearing the end, 10 more to go. I never thought i would feel this way. I actually thought i was stronger than this. But im mentally and physically exhausted now.


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
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Wendy, its imperative that you understand stopping treatments is NOT an option if you want to eliminate the cancer. You are very lucky to have a supportive family there to help you. But at the same time, Im concerned about the choices they are telling you to make. Unless you have family members who have had years of medical training and/or they have knowledge of oral cancer, its treatments and side effects then they probably arent the best ones to be making your medical decisions. From what you described, they do not have a good understanding of how invasive OC and its treatments can be. SCC OC has claimed the lives of far too many good people. It is a deadly disease that you MUST treat completely to eliminate it or it will continue to grow. Your caregivers can read and learn about OC on the main OCF site. I posted the links in one of the first replies I made to your posts.

As Ive told you from the start you need to focus on what you have within your control... your intake. Every single day, you MUST take in at least 2500 calories and 48-64 oz of water or treatments will be much harder than they have to be. Since your weight has continued to drop you need to up your daily calories to 3000 +, optimal would be 3500 calories per day. The biggest issue here is your inability to keep food and water down. A feeding tube will not change having nausea. Have you discussed your nausea with your doctors? Usually only patients who are having chemo will suffer so much with severe nausea. The mouth sores can be helped with the baking soda/salt/warm water mouth rinse, prescription magic mouthwash, pain meds, and manuka honey. Whatever you take in that you throw up needs to be replaced. Losing weight so quickly has its own set of problems its causing. After going thru weeks of not getting enough calories and hydration, it will eventually catch up with any patient leaving them feeling absolutely terrible. This quickly can turn into a vicious cycle of playing catch up which is impossible to get ahead of. Ive been down that road and it landed me in the hospital several times for malnutrition and dehydration. I felt so bad I thought I was actually in the first stages of dying (I wasnt but I sure felt that bad). I know what you are going thru and how difficult it is. PLEASE help yourself and push yourself to eat and drink. You are coming to a critical point where you must turn your situation around. When I was going thru rads and really struggling, the malnutrition and dehydration were getting the best of me where I had trouble concentrating, remembering, multi-tasking, reading and carrying on a conversation. I do NOT want to see you get to this low point like I did.

I also advise you to ask at your treatment facility to speak to a therapist or other mental health professional who works with cancer patients. Many members have taken anxiety meds to get thru rads. This may be something that can help you. Without a strong support system at home, you need someone who understands what you are going thru and can help you to get thru it. Having someone to talk to face to face can help a patient to feel so much better.

At your treatment facility ask the nurses to use their suction machine to help with the thick mucous. Your doc can write you a prescription to get a portable suction machine at home too. Sleeping with your head slightly propped up on an incline and a humidifier at night helps too. Dairy products while soothing on the mouth sores also make more mucous. Have you talked with a nutritionist at your facility yet? If not, ask if they have someone available. Hopefully they have someone there who is familiar with the challenges an OC patient goes thru.

From what you wrote I know you must be feeling terrible. I completely understand, Ive been down that road myself. What it takes to turn this around is within your reach. You MUST talk openly to your medical team and let them know everything you have been telling us. Tell them all about your support you have at home and what they think you should do. Ask about a therapist, nutritionist, feeding tubes, prescriptions for a portable suction machine and extra fluids to keep you hydrated. We all are in your corner cheering you on, we believe in you. Probably more faith than you have in yourself. We are here to listen if you need to vent or offer suggestions to help make this as easy as possible. But, we can only do so much. Bottom line is... its up to you if you choose to take the advice given to enable you to turn your situation around. Im sorry if it seems like I nag you about your intake. Im not trying to give you a hard time at all. I hate OC and what it does to good people. I only want to see you succeed so you can bounce back and return to your regular lifestyle.

Keep trying and dont give up, no quitting is allowed. Today is a new day, a fresh start to get things right. You have a new chance to meet your daily minimums for calories and water (with your medical teams assistance). See your medical team and tell then everything!!! You need their help immediately today. Speak up and be your own advocate. Dont ever forget they work for you and you deserve their undivided attention right away, if they dont pay attention stick to your guns and tell them you are depending on their years of medical training and expertise. Keep us posted and best wishes with everything!!!!



PS... Im sending you a PM so click on the tiny flashing envelope.


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 2008
Posts: 246
Likes: 1
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Wendy, You need help from your medical team immediately! Stopping treatment is not an option. Someone has to take over your care for awhile. This is not a matter of you not being strong enough. It's a severe reaction to treatment with dehydration and weight loss.

Don't you get evaluated prior to radiation daily? Haven't the MD, Physician Assistants, and nurses on the cancer team established a relationship with you? All the things Christine and others have written need to be considered - hydration, medication evaluation, Peg or nasal gastric tube, etc., but FIRST you need a through medical evaluation

I do not think you can wait another day to get help. Your medical team needs to make a plan for you to be able to complete treatment.


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
Joined: Feb 2017
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You cannot stop treatment. You have to see your treatment team today. Do not let people make you think you could eat if you just tried harder. This infuriated me when my husband was in treatment. My husband was trying. He just could not do it. You need medical intervention today. One day, we just had to go to the treatment center and hang around until someone could talk to us. When they saw the condition my husband was in they kicked it into high gear and put on the full court press to turn things around for him. That is their job. Stopping treatment is not an option. This disease is a beast that wants to slay you. You have got to get a medical evaluation so you can stay the course and beat it back like a warrior. Keep us posted.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
Joined: Apr 2017
Posts: 61
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Im thinking its pretty serious at this point. My body quivers just drinking water and swallowing food. A few minutes and im nauseous and have to throw up. Im taking Zolfram for the nausea, it helps somewhat, but the mucus also makes me gag as well, causing me to throw up from the reflex. Im rinsing and cleaning my mouth every few hours. I keep trying new things, but have to rely on boost, but now even that is making me sick. I was never very tolerant of milk or dairy, and now its become an issue. Ive talked to my family...and seeing me today so sick and weak, they too think this might be for the best. I feel so bad for them, having to watch me be sick, refuse to eat and drink, out of fear of throwing up. The strain from it all has left my mouth raw and bloody. Im at my wits end. I have an older protective brother, who after seeing me get sick today, literally was telling me to stop treatments, saying its killing me. (I know he was just scared seeing me like this, and that is what is making him say it, but I told him im so close to finishing, but his point is that, it will do no good to finish , if im left sicker than when i started). So we all agreed to discuss the tube tomorrow. Im concerned as this doc, in the beginning, said he was strongly against the tube, but im down 30 lbs since this all began and losing a pound to a pound and a half a day. Im getting weaker each day. Something needs to change. I was told by a family member that im not trying hard enough, and that if i really wanted to eat and drink that i could. How can i argue with logic!? I keep telling them...im hungry and thirsty, but if it passes into my mouth and down my throat , it will make me sick. They say better to throw it up then, at least im eating. They are so scared of me not getting the nutrition i need that they are ignoring the fact that it also hurts me to get sick. Ughhhh. Pity party, over. ****I know im nearing the end, 10 more to go. I never thought i would feel this way. I actually thought i was stronger than this. But im mentally and physically exhausted now.


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
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Wendy, are you ok??? Your post is almost the exact one as yesterday like you did a copy/paste.

Check your PMs!!! Click on the tiny flashing envelope to get your messages.


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
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Joined: Apr 2017
Posts: 61
Quick update: or i hope it turns out quick. I am on my last radiation treatment on Tuesday. Then i will have made it, through one of the most difficult things ive ever experienced.

For informative purposes, i wont sugar coat this. The mouth,gum, and tongue. Sores/blisters have been plaguing my mouth for weeks. Now i can feel them and see them. They are painful and burn, to alleviate the pain i do a number of things. I use magic mouthwash, 50mg fentanyl patch, 2 benadryl, and a 10mg/325mg percoset. At this point in treatment, i sleep a lot. I eat somewhat. Right now it is just water and a couple of sips of boost. I know it HAS to be more, but frankly the burning tongue and my upper palate is so sore and tender that i cry like a 2 year old. I tried soft, jello, creamy soups, clear broth, any kind of soft food. Everything hurts. Thankfully, my team has at least given me 2 hydrations. Ive gotten refills on prescription, and made sure everything
was in order, before im finished with the radiation and oncology team. But i am hanging in there. This will not stop me. Ive went from 267lbs from the beginning of treatment to 228 lbs. Most everyone says that is great. You lost all that weight! I have to remind them that Cancer is the worst diet EVER!

So to all that have gone through this and those to come i wish you all peace and comfort. May the Lord walk with you through your troubled times.






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: Feb 2017
Posts: 67
Likes: 1
Supporting Member (50+ posts)
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Posts: 67
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Thank you for the update. Hopefully you will find you way through the recovery process with all the support you need. I am so grateful for the PEG tube that kept my husband alive but even more grateful that on Friday, he will have it OUT! You will get through this.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
Joined: Jun 2007
Posts: 10,507
Likes: 6
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YIPPEEE!!!!

Congrats on finishing your treatments today, Wendy!!!! Im so proud of you. smile I know you struggled and how difficult this was for you. Time to rest and focus on your intake. If you notice anything different that pops up dont hesitate to call your medical team and get checked out. Of course, you can continue to post here, ask questions or read and absorb info.

In only a few more days/weeks you will be feeling a little better. One day you will wake up and feel almost normal, you will be surprised at finally feeling ok for a change. Recovery can be a long and frustrating time. We can never recover as quickly as we think we should. Keep focusing on your intake and it will pull you thru til the time comes when you are feeling more like yourself again.

Let the healing begin!!!


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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