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#194984 - 08/13/17 09:59 PM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Oct 2012
Posts: 871
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 871
Toronto, Canada
Hi Wendy,

It's good that you have been able to figure out that Percocet might be the culprit. When you are ready to stop the pain mess, make sure you do so under the direction of a doctor, you will need to step down slowly otherwise you will suffer withdrawal symptoms. Perhaps for now, you really need to focus on your intake and letting yourself recover from the harsh treatment.


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.
#194985 - 08/14/17 01:19 AM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Jun 2007
Posts: 9,745
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,745
PA
Im relieved to hear you kept something down and are doing better today!

My doc explained to me that when using pain meds for severe pain a patient will not become addicted. Its when someone uses pain meds when they do not have pain that creates the start of a dependence on them and next comes addiction. Gloria is correct... the fentanyl patch must be stepped up and down. Fentanyl is the most powerful pain medication available, its stronger than morphine, percocet, oxycodone, etc. When the time comes, your doc will ween you off the patch by slowly taking you down to 25mcg's then 12.5. For now keep doing what you have today and push to drink the boost and hopefully you will find some answers tomorrow.

Keep us posted on how you make out with your calling in to see your doc tomorrow. Good luck!!!


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
#194988 - 08/14/17 05:32 AM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Apr 2017
Posts: 25
Tink222 Offline
Contributing Member (25+ posts)
Tink222  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 25
Roanoke, VA
I finished chemo and RADS last week and im going through the same symptoms. I have no desire for food orally or via feeding tube. The smell of ANY cooking makes me want to wretch! I'm not taking any pain meds although I have mild mouth sores. My blood work is presenting I have taken a hit to my kidneys so they are pushing fluids again I want to wretch. My port is possibly blocked so I'm having to dump fluids down the tube which gives me a full bloated feeling. Again, I want to wretch! Sigh.....

I think we are pretty close in our treatment/surgery timeline.
On a funny note my husband cooked Chicken Curry tonight once my favorite dish- now it makes me want to...😉


SCC 4a Biopsy- under tongue 4/7/17 results Squamous Cell Carcinoma. Surgery scheduled 5/9/17. Tumor Boarf reviewing case next Wednesday 5/3/17 Appt surgery/reconstruction/involvement TBD a affected area-base of tongue on the entire right side floor of mouth from base of tongue to wall of mandible, lymph nodes in neck involved. Proceeding w/PET, surgery/ reconstruction TBD, trach, port, radiation, chemo, feeding tube. Learning from you everyday. DeboraLee
#194994 - 08/14/17 10:54 PM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Feb 2017
Posts: 66
sooner Offline
Supporting Member (50+ posts)
sooner  Offline
Supporting Member (50+ posts)

Joined: Feb 2017
Posts: 66
Tink, hang in there. Your story was my husband at the end of treatment. It does get better. My husband had a PEG tube and it kept him alive. He had times when he struggled to meet the intake benchmarks even with a PEG. People could not understand why he could not just pour the calories into the PEG and call it good. What you are describing made it a way more complex problem than people could grasp. I am just going to say that recovery was a slow process for him but he did get his PEG tube out. Most of the symptoms you described have faded to be replaced with some other challenges in the eating department, related mostly to lack of saliva production and no return of his appetite. However, he can eat and we hold out lots of hope that over time it will get better. He keeps trying and fights off getting down about what he can't enjoy eating that he used to enjoy. You too, will get through it. Stay in touch with your treatment team as needed. He works full-time and is taking two separate trips in September. Try not to get discouraged. He could not go in a store for months because the smells made him throw up. Now we grocery shop together and look for things he might be able to try. Recovery is a long, slow process but better days are ahead in the future.


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
#194996 - 08/14/17 11:29 PM Re: Finished RADS, Now what?! [Re: sooner]  
Joined: Apr 2017
Posts: 25
Tink222 Offline
Contributing Member (25+ posts)
Tink222  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 25
Roanoke, VA
Oh Sooner thank you for the advice and support! It's hard to imagine that food will be a friend someday so I AM looking forward to better days!!!


SCC 4a Biopsy- under tongue 4/7/17 results Squamous Cell Carcinoma. Surgery scheduled 5/9/17. Tumor Boarf reviewing case next Wednesday 5/3/17 Appt surgery/reconstruction/involvement TBD a affected area-base of tongue on the entire right side floor of mouth from base of tongue to wall of mandible, lymph nodes in neck involved. Proceeding w/PET, surgery/ reconstruction TBD, trach, port, radiation, chemo, feeding tube. Learning from you everyday. DeboraLee
#195002 - 08/16/17 04:39 PM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Apr 2017
Posts: 51
WendyinGa Offline
Supporting Member (50+ posts)
WendyinGa  Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 51
Valdosta,Ga.,USA
Just a quick update. Going into hospital for dehydration and tests. Will keep you updated.


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.---awaiting pathology
05/08/17 Cancer still present
05/10/17 2nd surgery- removing more
06/05/17 Simulation done, PET on 6th, RADS start on 06/20/17
07/11/17 15th treatment completed. Halfway point!
08/01/17 Last treatment! Woohoo!
08/16/17 Hospitalized due to malnutrition and dehydration
08/24/17 Home again
#195004 - 08/17/17 01:25 AM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Feb 2017
Posts: 66
sooner Offline
Supporting Member (50+ posts)
sooner  Offline
Supporting Member (50+ posts)

Joined: Feb 2017
Posts: 66
Wendy, I am so sorry for your struggle. Thank you for the update. Stay strong. Hopefully they can help you sort all of this out. You have had a very hard road. Hang on! Help is on the way with fluids.


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
#195006 - 08/17/17 02:40 AM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Jun 2007
Posts: 9,745
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,745
PA
Im thinking of you and wishing you all the very best. You're in the best place to get the medical attention you need. Dont be afraid to speak up and be your own advocate. You know your body and what isnt normal for you. Update us when you are up to it.

(((HUGS)))


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
#195068 - 08/30/17 02:14 AM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Apr 2017
Posts: 51
WendyinGa Offline
Supporting Member (50+ posts)
WendyinGa  Offline
Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 51
Valdosta,Ga.,USA

Hi, Everyone. Latest update: Went to my regular doctor on 8-16-17, I was pretty weak and stupidly stubborn. I had not eaten since near the beginning of July (maybe only 1 little boost or ensure a day) and barely consumed liquid since about 7-20-17. Though to be honest, not entirely my fault. I had a myriad of problems that led to being hospitalized. The radiation at top of the list. From the start, I was having a hard time with it. As you all know, loss of taste, no saliva, inability to swallow properly, weakness, and fatigue leads your head down the wrong path and your body follows. Next was the medication for pain management. First Norco, then Percocet, then Fentanyl, all of which caused me to not want to eat or drink. My body simply could not and would not take in food. I was vomiting everything that went into my body, water included. These meds caused severe constipation and blockage, which in turn also made my body "think" it didnt need food, as it felt "full". So, by the time, I was questioning whether I was inadvertently starving myself, my doctors appointment rolled around. He took a look at me, and sent me to the hospital. Where I stayed 9 days. Taking in IV's and nutrients called TPN (big bags of milky stuff that looks like ensure through the IV), coupled with nausea and vomiting meds, and laxatives, and ughhh enemas. With days full blood work, blown veins and infected IV's, I now look like I was either beaten severely or am doing drugs, I have needle marks for weeks. But, on the bright side, I no longer look emaciated, I look squishy from all the TPN bags consumed. The moral of this story kids, Laxatives are our friends. We love them and they love us. Lay off the heavy meds as soon as possible...I am now on my last dose of Fentanyl, which was down from 50 mg. to 12 mg, no Norco or percocet. I am now spending what seems like a fortune to me trying to eat regular food. Which by the way I can neither taste and barely swallow without chasing it down with gulps of water. I am feeling FANTASTIC in comparison to what the month of July gave me and looking forward to healing even more. I am just an impatient person. I want this over so bad, as do we all. Loves to you 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.---awaiting pathology
05/08/17 Cancer still present
05/10/17 2nd surgery- removing more
06/05/17 Simulation done, PET on 6th, RADS start on 06/20/17
07/11/17 15th treatment completed. Halfway point!
08/01/17 Last treatment! Woohoo!
08/16/17 Hospitalized due to malnutrition and dehydration
08/24/17 Home again
#195069 - 08/30/17 10:38 AM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Jun 2007
Posts: 9,745
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,745
PA
Thanks for updating, Wendy! Im so relieved you are finally doing much better. I was starting to get very concerned and wondered why your doc hadnt admitted you. At only a few weeks post rads, Id be very surprised if you said you could taste food correctly again already. Thankfully the worst of this is behind you. Now that you are doing better with your intake, you will start to recover, slooowwlllllyyyyyy! Your sense of taste will come back, but it takes many weeks/months before its even close to what it was pre-rads. Dont be surprised if all of a sudden you take a bite and it actually has a taste. That flavor might disappear after the first couple bites so dont get discouraged if you have many ups and downs with your sense of taste. Its all part of the healing process. Recovery is definitely a huge testing of ones patience!!!

Thanks again for updating us smile . 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
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