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#179838 05-04-2014 12:51 PM
Joined: Dec 2013
Posts: 78
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Joined: Dec 2013
Posts: 78
Hello to dear members and forum readers.

First of all, I actively visited OCF forum even I didn't post updates since post-surgery. Part of commitment, I am here with updates for respected members. I successfully completed radiation treatments on 4/28 with “expected and acceptable normal” seamlessly. Again, a BIG thank you to OCF’s extraordinary contribution for achieving such smoother treatment experience. In short, I completed treatments without any external feeding systems since swallow function remained intact throughout the journey.

No exception, side effects I witnessed are;

1. Mouth sores.
2. Weight loss due to inability to eat. Net weight loss is five lbs in six weeks.
3. Natural appetite was always remained intact, but due to sensitive mouth, was not able to eat properly.
4. Puffiness on neck surface due to treatment. It’s gone now.
5. Lot of throat secretions cough during weeks 4-6.
6. Doctor stopped using fluoride treatments until complete healing due to sensitive nerves in mouth which reacted horribly during week three.

7. Week 4 and 5 were worst among the all including current post treatment week in terms of two elements.

a. Inability to eat.
Even with the pureed food I had a hard time. Was able to feel salt presence in peanut butter (extreme burning sensation) and a very fine texture of two ingredients (peanut butter and protein powder) in a milk shake while swallowing. I just took those two off for three weeks and continued milkshake without those. I never had a swallow problem at all. Only thing was, due to sensitive skin surface, nerves reacted in an extreme burning sensation with these two ingredients which I managed by taking those two off for three weeks. However, I tried and ate variety of pureed and boiled food just to maintain body with variety of nutritional values among other things.
Most important, my taste remained intact throughout the treatment. Yes, there is a deviation in taste but was able to taste everything I ate and drink, more specifically, I was able to differentiate taste (I did blind taste experiment during week 5 and 6) of sugar, salt, tea, coffee (Dunkin Donuts vs Starbucks), mango juice, mashed potato with-without butter and few of the naked brand smoothies.
b. Throat secretions cough
I religiously maintained every hour (starting week four until today) exercise to have mouth and throat seasoned with salt and baking soda. This was an annoying part for two weeks (week 4 and 5). Learnt lessons within two days, when I woke up in the morning of fourth week full of cough jammed in throat. Took an hour to get normal feeling. I decided to have salt-baking soda gargle every 90 minutes through out the night after 11:00pm. I sat up alarm at regular intervals of 90 minutes at 12:30am, 2:00am, 3:30am, 5:00am. 5:00 am on wards, I started my day to get ready and drive to treatment center. This was an extreme easier way for me to control horrible accumulations of thick saliva and cough. Had never problem with sleep despite regular intervals of 90 minutes wake up calls. Was worth the judgment I made to achieve more normal feeling in throat.

8. Energy levels: I myself drove to treatment center for all 30 treatments every morning 7 AM without any one, just by myself. Drove 22 miles each way, with an average 20 minutes waiting before my call to treatment and 20 minutes waiting to get my car back after treatment. Meaning, I spent 2 hours 30 minutes on an average every day in total for the treatment round trip. I used to take salt-baking soda and a cup to treatment center to keep mouth clear off from thick saliva and cough.

Post treatments feeling;

1. I rang a bell on 4/28 9:00am.
2. Outlook has changed due to treatment, especially due to weight loss and skin scars from treatment, but it’s all temporary.
3. Healing is improving every day.
4. I am able to enjoy milkshake with everything now, peanut butter and protein powder for last three days now.
5. Today I experimented first semisolid food intake with rice-lentil soup and a half banana with sugar and butter. I ate everything I had in bowl.
6. Weight is now stable and I gained two lbs so far.
7. Throat secretions cough is now less than 20% than what it used to be about two weeks ago.
8. I cut down on meds I was prescribed to control pain, thrush, saliva and secretions. I just taking at nights now.

Please feel free to replay or PM if have any question. I always have and will keep checking posts. Will keep posted all on a regular intervals. Again, a BIG thank you to all.

Last edited by neversmoke; 05-04-2014 12:59 PM.

Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
Joined: Jan 2013
Posts: 1,291
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Wonderful post! Your tenacity and focus throughout shows in the great results you experienced. You did all the things right, maybe too right :-) gargling every 90 minutes? You got more grit than most. Hang around and offer support to others who come along after you. You have a great story to share and uplift the folks.


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: Jun 2007
Posts: 10,507
Likes: 2
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Congrats on completing your treatments!!! Looks like you did very well only losing 5 pounds during your 6 weeks of treatments. Continue taking in extra calories to help promote healing. A full recovery can take up to 2 years so hang in there. Slow and steady will win the race.

Best wishes with your continued recovery!!!


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
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What an incredible story! Glad it went so well for the most part. You were definitely on it, neversmoke. Great job on your part. Congratulations.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
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.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Jul 2012
Posts: 3,267
Patient Advocate (old timer, 2000 posts)
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Posts: 3,267
Congratulations! Thank you for the summary, which I'm sure will help others through this journey.


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: Dec 2013
Posts: 78
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Dec 2013
Posts: 78
A BIG thank you to all of you (Christine, Uptown, Donfoo and PaulB) for your motivational support and blesses. Definitely, I'll take care of myself and will maintain patience since it's a long way to go. One day at a time. Learning was immense during part two treatment compared to part one treatment. But ultimately, I am happy to hit the finish-line I drew back in November.



Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
Joined: Jun 2007
Posts: 10,507
Likes: 2
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
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You're welcome! Always here to help anytime you need it.


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: Jul 2009
Posts: 1,399
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,399
Ankur - you are amazing. Fantastic job through a grueling time, and the relatively small weight loss is especially impressive (I lost something like 30 pounds and know many people have lost more). Must admit I identified with the driving onesself to treatment part as I did the same thing, about the same amount of time each day as well. Good for you.

Continued healing and improvement. You're a hero.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 10 years all clear in 6/19 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: Apr 2014
Posts: 236
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Joined: Apr 2014
Posts: 236
Congrats on completing the Radiation treatments . I am a new member to the forum. My mother has stage 4 Oral Cancer. Surgery was a success in removing the Tumor in the lower right bottom jaw. My mother is now in her 3rd week of radiation treatments. She is noticing some swelling and redness in the neck and face area. Its starting to scare her a little. She has to complete 30 treatments and in the last 2 weeks of treatment she will have two treatments a day six hours apart.

I'm praying my mother will be able to get through it.



Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Oct 2012
Posts: 1,275
Likes: 6
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Posts: 1,275
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You mother will get through it. But do let her know that she has to keep up with her fluid intake and put cream on her face and neck are (NOT before radiation, but immediately after radiation). My husband had a few double sessions during his treatment because of the Christmas holidays. It was a bit of a drag because we had to go to the hospital twice in a day, but it did not seem to make a significant difference to how he was feeling.


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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