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Re: Doctor error? [Re: Syzygy48] #196245
04-23-2018 10:06 PM
04-23-2018 10:06 PM
Joined: Jul 2012
Posts: 3,135
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
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Joined: Jul 2012
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Jay,

It’s a small study, plus it’s from 2014, and may or may not be ongoing. My cancer was in the oropharynx, and 50% of the patient’s in this study were from there and the rest it doesn’t say, but they all received 33.04Gy, nd to my knowkedge, metastases usually do not occur in lymph level l for oropharyngeal cancer, but certain tongue cancers do. I thought in other studies in the oropharynx they were avoiding level 1, and there may be 100’s of studies, which you wouid have to qualify for at the start. At this point, you are probably getting 2Gy a day or around that, plus once you start radiation to a tumor it’s not good to stop until fully completed for a killing effect as it can make matters worse. I did my best not to miss any treatments, as advised by the doctors and staff too. Even if the scans show no cancer or the cancer was removed, there still can be microscopic metasteses that can recurr later on if not treated, and that’s what the radiation is for too. Cancer is best treated the first time, although some may have the misfortune to go through it a second time, but lucky enough to come through that. It gets more difficult as time goes on!

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






Re: Doctor error? [Re: Syzygy48] #196251
04-24-2018 11:36 AM
04-24-2018 11:36 AM
Joined: Mar 2018
Posts: 18
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Syzygy48 Offline OP
Member
Syzygy48  Offline OP
Member
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Joined: Mar 2018
Posts: 18
Paul,

Thank you as always for your insights. Do you have the dry mouth?


Jay


--2003 SCC Left lateral tongue
T-I
Partial Glossectomy
--2015 SCC Left lateral tongue
T-II N-0 M-0
Partial Glossectomy SND
--1/30/18 SCC T-IV N-0 M-0
Segmental Mandibulectomy, Partial Glossectomy,
Fibular Free Flap (failed)
Emergency flap surgery (partial success)
Leech therapy (partial success)
M.I. in hospital 2 90% blockages
2 stents inserted
--3/2/18 Pec Flap
RAD IMRT 35 (in progress)
Chemo 7 doses Cisplatin (in progress)
Re: Doctor error? [Re: Syzygy48] #196254
04-24-2018 12:02 PM
04-24-2018 12:02 PM
Joined: Jul 2012
Posts: 3,135
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,135
NYC
Hi Jay,

Yes, I have dry mouth, but it’s not as bad as it was after treatment or years after that, but I always carry a water bottle with me, so that helps. The dry mouth, and pretty much continious treatments, did a number on my teeth, so I needed all 30 to be surgically extracted about 4 years into my journey, and now I have to wait to get implants or dentures after healing, and then MI. I doubt implants due to all the radiation I had, and already had ORN, Osteoradionecrosis, from radiation and tooth extraction.

impeccable oral care is a must, and use of prescription fluoride treatments, no alcohol mouth rinse, brushing after each meal, and before bed, and regular visits to your dentist after you finish. You may have needed dental clearance before you started rads, and told when to return?

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






Re: Doctor error? [Re: Syzygy48] #196256
04-24-2018 07:45 PM
04-24-2018 07:45 PM
Joined: Jun 2007
Posts: 10,227
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: 10,227
PA
Jay, since this threads conversation has turned to what was being discussed on another thread Ive merged the 2 together. I hope this isnt confusing for anyone reading as the flow isnt as easy to follow.

BTW... I looked up the study you mentioned. Lessening the rads to help patients manage dramatically less collateral damage to other nearby areas sure would have sounded good to me when I was suffering thru it. I definitely would have jumped at the chance too. But, having only 71 patients take part is a very small study. Then looking at the tumor locations, that significantly lowers it to far less who have similar located tumors. I cant remember if when I read thru the study earlier it had anyone who was being treated for multiple cases of SCC over the span of many years. That alone I would think would make you ineligible to lessen the course of rads.



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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