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Joined: Aug 2014
Posts: 61
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Joined: Aug 2014
Posts: 61
Hi everyone, I am new here but I have been reading for sometime now. I am about 4 1/2 weeks out of 30 days of radiation. I had surgery in april, 1/2 my tongue removed. Replaced with flap. I also had 2 chemo treatments, cisplatin. It has and is a rough treatment. I held my weight through most of this, but last week was bad. I was on a 50 fentynal patch, 5mg oxycoden liquid, and ativan .5.. Well last monday I threw it all in the garbage. I was just sick of being in a fog, a daze. Plus I felt I was becoming addicted to it. Well, I never knew about the withdrawal. Monday night was bad. Vomitting, dizzy, insomnia, cold, hot,no enery etc..... I thought I was dying. I called doctor, said ride it out. This was Tuesday. Thursday, I called him again, into hospital I went. They gave me fluids, checked all vitals. Did blood and urine test. All was fine, dr said I was suffering some withdrawal.. My issue now is the weight I lost. I bet I lost 15 lbs in a week. Today, sunday is 6 days without the drugs. I have been able to eat and put the boost in my peg tube. I just hope the weight comes back... My last appointment with my RO, he said I looked great, do not use peg tube, everything in mouth, he wants peg out in 2 weeks.. I was sooo happy. I see him sept. 2nd, and now I am affraid he will say nope... Has this happened to anyone here? Today, I am 90 percent using mouth for food and the advil I take now. I use peg for a few cans of boost. Does the weight come back? Just last weekend I was driving, took kids school shopping, etc.. Did I mess it up by going b cold turkey? Thank you

ps..this web site is great. I know we are all in a fight, but this web site feels like a big family.


Tongue Cancer
1/2 tongue removed, replaced by flap from forearm. April 15, 2014
neck disection, 1 lympnode involved, doctors removed all to make sure cancer is gone.
30 rad treatments and 2 cisplatin chemo, doctor said I did not need the third
one. Finished up July 30,2014
Chemo treatment was my choice. The board felt surgery and radiation was plenty to take care of my cancer.
Joined: Aug 2014
Posts: 61
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Aug 2014
Posts: 61
Hi , any help? Also, I noticed since I am eating, my tongue gets white. I brush some off, but it all will not comr off...whats is this from?


Tongue Cancer
1/2 tongue removed, replaced by flap from forearm. April 15, 2014
neck disection, 1 lympnode involved, doctors removed all to make sure cancer is gone.
30 rad treatments and 2 cisplatin chemo, doctor said I did not need the third
one. Finished up July 30,2014
Chemo treatment was my choice. The board felt surgery and radiation was plenty to take care of my cancer.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Welcome to OCF! The white on your tongue could be thrush. See your physician, it needs prescription medication to cure.

You are just starting your recovery phase. Weight gain will take a long time to happen. Every single day until at the very least you hit the one year post rads anniversary you will need to focus on your daily intake. Every single day you should be taking in at least 2500 calories and 48-64 oz of water. Even taking in 3000- 4000 calories daily is not too much. Your body has been thru the war and has burned up an incredible amount of fuel. This will continue for many months. AS complete recovery can take every bit of 2 full years after finishing rads.

By the time I finished rads, I had lost 65 pounds. During my recovery I began drinking gigantic chocolate peanut butter milkshakes. Some days I would drink 2 or 3 shakes plus attempting to eat and using the feeding tube. One day I sat down and calculated the calories per shake. I was shocked to see they had anywhere from 1200-2500 calories each. That meant some days I was taking in over 7000 calories and still I did not gain an ounce. This continued for several years. I finally began to put a few pounds back on about 5 years post rads. But to this day (Im almost 7 years post rads now) I struggle with my daily intake and maintaining my weight.

As far as pain goes, keep it under control. Its nothing to be ashamed of if you need to take pain meds. I understand not wanting to use them but its not one bit helpful to the patient if they are in pain. That just causes undue stress. Yes, the patch should have been stepped down. Your doc should have overseen this! Fentanyl is the strongest pain medicine available, it needs to be handled with care following directions exactly. There is 12.5, 25, 50 and 100mg patches. It takes about 24 hours to adjust from the patch being put on or taken off.

Do NOT rush to get rid of the feeding tube. Recovery is full of ups and downs with a few major setbacks here and there. So much better to have it and avoid malnutrition and dehydration! Those are not fun, it makes you feel so bad you think you may be dying. If you can go for 2 months without using the tube then its time to be rid of it. Until then, its a tool to help get you thru this phase.

Hang in there! Recovery is a long road. In a few weeks you will be doing so much better 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: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Joined: Dec 2003
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Beermanx, don't do something like that again! LOL

Yes, you could have had a much worse outcome than you did. Luckily you were on a low dose of narcotics. In the beat down state you were, you risked things like a heart attack. The body can only take so much of a shock at once.

In the last year I consumed 4,000-5,000 calories a day and gained 25 lbs. After treatment I did the same for almost 18 months until I gained 25. Then it came pouring on. I had lost about 80 lbs both times. I hope this helps. Of course, it depends on your metabolism, diet and exercise.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Aug 2014
Posts: 61
Supporting Member (50+ posts)
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Joined: Aug 2014
Posts: 61
Thanks guys. For a ome reason my doctor said lets eat evetything by mouth, lets get that tube out. I was shocked. I have been doing my swallowing exercises and eating by mouth and my neck hurts. Is this from using muscles that have not been used much? I also had a radical neck disecton, plus its only been 4 weeks since radiation. Could this be why I have some tightness and pain? Thanks


Tongue Cancer
1/2 tongue removed, replaced by flap from forearm. April 15, 2014
neck disection, 1 lympnode involved, doctors removed all to make sure cancer is gone.
30 rad treatments and 2 cisplatin chemo, doctor said I did not need the third
one. Finished up July 30,2014
Chemo treatment was my choice. The board felt surgery and radiation was plenty to take care of my cancer.
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
4 weeks out of treatment, no pain meds and eating everything by mouth? You are a ROCK STAR!!

Your neck has muscles and nerves were damaged from the surgery and the radiation. It will be like that for a few more weeks.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Aug 2014
Posts: 61
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Aug 2014
Posts: 61
Yea, I ate eggs, potatoes, milkshakes, boost, yogurt, ice cream, etc in the past 4 days. All soft stuff. Now this week gonna try some other food. I use lots of water to get the food down, but that is better. Seems my taste is getting better... I was worried about my neck, but I guess im not done healing.. thanks


Tongue Cancer
1/2 tongue removed, replaced by flap from forearm. April 15, 2014
neck disection, 1 lympnode involved, doctors removed all to make sure cancer is gone.
30 rad treatments and 2 cisplatin chemo, doctor said I did not need the third
one. Finished up July 30,2014
Chemo treatment was my choice. The board felt surgery and radiation was plenty to take care of my cancer.
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
Likes: 1
[quote]Did I mess it up by going b cold turkey?[/quote]Uh. yea. Like Uptown says, don't do that again. You seem to be doing just fine. Just keep getting calories as you can, hopefully by throat as that ensures fewer problems long term with swallowing. Plus that PEG will be history as soon as you can count enough calories going down the gullet.

Things take time so one day at a time. Eat, drink, and do control the pain. The radiation is very hard on the tissues that are radiated. It usually kills sufficient tissue to give you lifetime scarring under the skin that feels like tight and tough spots. That is normal. Good luck


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Aug 2014
Posts: 61
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Aug 2014
Posts: 61
Thank you. I notice I get a build up under my chin and around the adams apple. Is this normal? Will this cause some pain and discomfort? Thanks


Tongue Cancer
1/2 tongue removed, replaced by flap from forearm. April 15, 2014
neck disection, 1 lympnode involved, doctors removed all to make sure cancer is gone.
30 rad treatments and 2 cisplatin chemo, doctor said I did not need the third
one. Finished up July 30,2014
Chemo treatment was my choice. The board felt surgery and radiation was plenty to take care of my cancer.
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
Likes: 1
Rads and surgery are major treatments so it is not unusual for there to be swelling. The rads also scar tissue under the surface and that creates long term lumps. The rad scarring generally does not cause pain but tightness is common so some stretching is needed to keep it stretched and loose.
As always, if anything seems odd for any period of time, ring the doctor to ensure it is nothing serious.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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