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Thinking of STOPPING RT after 25 sessions only 7 more left but #197635
11-23-2018 10:50 AM
11-23-2018 10:50 AM
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bebefrida Offline OP
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bebefrida  Offline OP
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Hi,

I finished my 25 RT treatment and 5 Chemo treatment last week Friday ( Nov 16th,2018) on Sunday I was hospitalized due to high fever and a severe burn on my neck.
After 4 days in the hospital and all treatments being stopped, I am now wondering what is next? I have technically one more week left but I don't know if i can take it.

PS. My tumour( floor of the mouth was already removed Sept 5th. and radiation and chemo started 6 weeks after. I was stage 4 with 3 positive lymph nodes and one lymph node with external nerve spread.
Anyone here has any experience with this kind of situation? any advice is appreciated


The floor of the mouth tumor
Surgery 9/5/18 Selective Neck dissection with Flap replacement
SCC, moderately differentiated
T2 N3B based on biopsy and pathology
21 nodes removed 4 were cancerous 1 of the 4 had expanded outside of the Lymph sack into nerves
Chemo and rads started 10/16/2018 carboplatin/Taxotere once a week and radiation 5x a week. all for 6 weeks.


Re: Thinking of STOPPING RT after 25 sessions only 7 more left but [Re: bebefrida] #197636
11-23-2018 01:05 PM
11-23-2018 01:05 PM
Joined: Jun 2013
Posts: 261
alabama
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KristenS Offline
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KristenS  Offline
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alabama
What I did at the time ... curl up on the floor and cry a lot (gently). And consider quitting. But then I kept on going. However, my situation wasn't as serious as yours. I probably could have stopped, since we got the whole thing surgically anyway. You had lymph node spread ... that's a lot scarier.

Are you on painkillers? That may seem obvious but ... my doctors didn't actually give me any painkillers till I broke down completely in their office towards the latter end of treatment. And no one told me I could ask. I didn't TAKE anything at home, because I had the stupid feeding tube and wasn't sure what could go in it. So ... it got pretty bad. So if you aren't already on strong painkillers and on a treatment regimen for your neck (I'm guessing that's where your burn is?) ... please insist on one. It does make a lot of difference.

And ... very gentle ((hugs)), whatever you choose to do.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Thinking of STOPPING RT after 25 sessions only 7 more left but [Re: KristenS] #197637
11-23-2018 01:27 PM
11-23-2018 01:27 PM
Joined: Oct 2018
Posts: 4
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bebefrida Offline OP
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bebefrida  Offline OP
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Dear Kristen,
Thank you for your response. My tumour was surgically removed but I had some lymph nodes affected. I am on 50 Fentanyl patch plus morphine and it's still extremely painful in my mouth especially. :-(


The floor of the mouth tumor
Surgery 9/5/18 Selective Neck dissection with Flap replacement
SCC, moderately differentiated
T2 N3B based on biopsy and pathology
21 nodes removed 4 were cancerous 1 of the 4 had expanded outside of the Lymph sack into nerves
Chemo and rads started 10/16/2018 carboplatin/Taxotere once a week and radiation 5x a week. all for 6 weeks.


Re: Thinking of STOPPING RT after 25 sessions only 7 more left but [Re: bebefrida] #197638
11-23-2018 06:52 PM
11-23-2018 06:52 PM
Joined: Jun 2013
Posts: 261
alabama
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KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
Gold Member (200+ posts)
K

Joined: Jun 2013
Posts: 261
alabama
Do you have the special mouthwash (Magic Mouthwash or whatever it goes by in your area)? Lidocaine plus various ingredients, depending on the formulation in each place. That can help with the mouth. Even if you're not eating by mouth, it does numb for a bit. (Again, you may already have this, but worth mentioning in case you don't.)

(ETA: if you're just rinsing and not swallowing with it, you can use it fairly frequently... don't be afraid to use what you need!)

And I am REALLY glad you are already on the Fentanyl and other stuff ... I wish it would do more for you, but it does help!

((hugs))

It will get better. It will get better. It will get better. (Keep telling yourself this. It's true.)

Last edited by KristenS; 11-23-2018 06:52 PM. Reason: clarity and update

Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Thinking of STOPPING RT after 25 sessions only 7 more left but [Re: bebefrida] #197639
11-23-2018 08:50 PM
11-23-2018 08:50 PM
Joined: Jun 2007
Posts: 10,189
PA
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ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

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Joined: Jun 2007
Posts: 10,189
PA
Towards the end of rads almost all patients being to struggle. Their sense of taste is shot, most can barely swallow, painful mouth sores, open oozing radiation burns on the neck, losing significant weight along with muscle, stamina and strength are just some of the problems OC patients have towards the end of rads. I tried to quit too but my son and nurse refused to even discuss it. I was told I MUST continue rads right thru the end no matter what. My son saids he would carry me into rads and my nurse went right along with him. I had lost my voice and was dehydrated even with getting extra hydration a few times a week which landed me being admitted into the hospital for a few days. I completely understand every single aspect of what you are going thru and how difficult rads and all the horrible side effects can be. The best person to discuss your concerns with is your doctor. They should be able to explain in detail what impact skipping some of your radiation treatments would have on the overall odds of eliminating the cancer. One important thing Ive picked up from interacting with so many OC patients over the years is the better patients can do with their intake, the easier treatments will be for them. If you can take in at least 2500 calories and 48-64 oz of water every single day from now until you hit your first year post rads, it should help to make everything easier. If you know you arent taking in enough fluids ask your doc to give you a prescription for extra hydration. After getting a couple bags of fluids I know it will help perk you right up where you should notice a huge difference in how you feel. Of course this decision is ultimately yours to make but please think it over long and hard before making any change to your treatment plan. Even though rads for OC is probably one of the hardest things a cancer patient can go thru, it really is a matter of life or death.

Stop back frequently, read posts and learn from the hundreds of topics on the main OCF site. Know you are not alone with this! Many others here have been in your shoes, myself included. We know how hard rads can be. We're here to lean on when you need to. Best wishes with everything!!!


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
Re: Thinking of STOPPING RT after 25 sessions only 7 more left but [Re: ChristineB] #197640
11-24-2018 10:53 AM
11-24-2018 10:53 AM
Joined: Oct 2018
Posts: 4
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bebefrida Offline OP
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bebefrida  Offline OP
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Joined: Oct 2018
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Thank you so much for your supportive words. My Dr. does not really go into detail other than I have to finish. and it's up to me so it's very frustrating. My daughter who can be very aggressive with these Dr. is going with me on Monday to find out exactly how they are going to deal with the missed week of Rad's and how exactly will they decided how much Gr I will be getting for the remaining. She can be a real bitch when she wants and she is like a dog and a bone she will not give up until she gets the answers she needs so I hope she will be able to get me some detail information. Any suggestions on what questions to ask will be greatly appreciated.


The floor of the mouth tumor
Surgery 9/5/18 Selective Neck dissection with Flap replacement
SCC, moderately differentiated
T2 N3B based on biopsy and pathology
21 nodes removed 4 were cancerous 1 of the 4 had expanded outside of the Lymph sack into nerves
Chemo and rads started 10/16/2018 carboplatin/Taxotere once a week and radiation 5x a week. all for 6 weeks.


Re: Thinking of STOPPING RT after 25 sessions only 7 more left but [Re: bebefrida] #197643
11-25-2018 08:19 AM
11-25-2018 08:19 AM
Joined: Jun 2007
Posts: 10,189
PA
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ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,189
PA
If your daughter is going with you to advocate for you she may want to spend some time reading both here and on the main OCF site so she has a better idea of what she should expect. Theres hundreds of pages of info she can read with links to go into great detail for those who are determined to find out every single detail.

Rads missed will be tacked onto the end of treatments. At least thats what happened when I missed one and from what others here have said. There are very specific formulas and flow charts doctors in the US use to determine what course of action works best for what patients. If a patient does not complete their treatments its unlikely the cancer will be eliminated. Recurrences can and do happen when treatments are not finished and unfortunately recurrences seem to move faster than the original tumors do (just my opinion).

Please think every single thing over and take your time to decide if you want to continue. Ive been here for 11.5 years and been thru recurrences myself, I cant think of a single case where the patient quit rads and survived for any great length of time. Cancer is an absolutely horrible disease that comes with horrendous treatments and side effects for those with OC. We have been there ourselves and understand how you feel and how much treatments do a number on patients. The better the patients intake and hydration, the easier it will be on them.

Main OCF Site... Understanding Oral Cancer





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
Re: Thinking of STOPPING RT after 25 sessions only 7 more left but [Re: bebefrida] #197644
11-25-2018 09:54 AM
11-25-2018 09:54 AM
Joined: Oct 2012
Posts: 1,029
Toronto, Canada
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gmcraft Offline

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gmcraft  Offline

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Patient Advocate (1000+ posts)
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Joined: Oct 2012
Posts: 1,029
Toronto, Canada
Do you know what’s the cause of your infection? Was it from the sores in your neck? When my husband was in treatment, we were taught to use saline soaks a few ties a day to dry up the sores and then to put cream afterwards. I’m not sure if it’s a good idea for you to try that now if you have an infection. But going forward, if you are going to continue treatment, it may be something to keep in mind.

I’ve read on this forum (from a post by PaulB) that the cancer re-populates after a certain number of days if the treatment isn’t complete. PaulB is extremely knowledgeable about oral cancer, maybe you could try searching for his posts. It was from maybe 3 or 4 years ago.

Last edited by gmcraft; 11-25-2018 09:55 AM. Reason: Typo

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.
Re: Thinking of STOPPING RT after 25 sessions only 7 more left but [Re: gmcraft] #197654
11-28-2018 11:03 AM
11-28-2018 11:03 AM
Joined: Jun 2017
Posts: 29
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Magnum Offline
Contributing Member (25+ posts)
Magnum  Offline
Contributing Member (25+ posts)
M

Joined: Jun 2017
Posts: 29
I have read many of PaulB's posts and they are very informative!


Susan
04.12.16 1st surgery; rt partial glossectomy; neck dissection; 2/38 lymph nodes positive
05.12.16 Resected T2, N2b, M0
05.24.16 Rad, Cisplatin
10.03.16 Clear PET
04.11.17 Clear PET
06.09.17 1st recur
06.21.17 2nd Surg: rt partial glossectomy; forearm free flap; rt thigh skin graft
11.09.17 2nd recur
11.30.17 Nivolumab
02.06-16.18 Brachytherapy
06.12.18 3rd recur
06.12.18 Lt axillary lymph node SCC
07.05.18 Pain pump placd
08.23.18 Pump removd
10.29.18 PET-CT responds to treatmnt


Re: Thinking of STOPPING RT after 25 sessions only 7 more left but [Re: bebefrida] #197655
11-28-2018 03:04 PM
11-28-2018 03:04 PM
Joined: Jul 2012
Posts: 3,122
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
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Joined: Jul 2012
Posts: 3,122
NYC
Hi!

It’s been a few years, thankfully, that I had rads, and have forgotten much! You might want to check with your doctors before stopping! The tumor has to go through certain phases before it’s possibly eliminated such as the S phase, G1, G2, etc, not necessarily in that order, but don’t quote me lol. Radiation in fact works less after the 4th week or so, but takes the 7 weeks for it to fully work or 5-6 weeks with excelerated radiation. Longer is not better, after 7 weeks, but for some reason, even if there is a delay in treatment, they have you complete the full amount, 7 weeks. Another factor is not the total weeks, but keeping the treatment package under 100 days for optimal results.

Twice I didn’t complete my radiation treatment as outlined. Once was due to being in the hospital for several days, and then missing several days due to the power outage, which they tacked on a 6th day, and had you finish a week later too.

I hope this helps


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
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 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent







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