| Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Dec 2012 Posts: 26 | Paul, it's good to hear that all is scheduled. Know we'll all be pulling for you.
SCC Started in the right tonsil they think, T1N2bM1 HPV+ Lots of nodes involved including some near the carotid - didn't come out during neck dissection Distant Met's - one in the mediastinum, some suspicious stuff in the lungs Radiation 70 Gy in 35 fraction Cisplatin - 3 Stereotactic rad to the mediastinum Clean PET Apr 13 Clean PET Aug 13 Clean PET Dec 13 Clean CT with contrast Mar 14 Clean CT with contrast Sept 14 Clean CT with contrast Feb 15
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | About 200 million. You enjoy the holidays the same.
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Well, January 6th didn't go over well with my two radiation oncologist's overseeing my care at the hospital, who don't want to wait any longer being I had a neck dissection on October 24th, with positive margins, so now I'm starting radiation this Sunday, December 22nd at 7PM. This was the schedule coordinator idea at the private radiation center that came up with the January date, which I happily agreed, but should have checked first with the doctors before I started calling everyone, and this morning, I had to call everyone back to re-schedule transportation, and chemo, which will be on December 26th at 9am, which is going to be more of a inconvienance to go there, which is not easy for me not driving, getting back home, and then going to radiation later in the day. Now they say only night positions are available for radiation, and there was no mention of this previously, and hours of operation were Monday through Friday 8am-4:30pm, but they are closed on the 24th and 25th, so those days will have to be made up, and is going to be a problem for my driver driving at night, including myself. Plus, the concierge who handles booking restaurants, hotels, told me three weeks ago, it looked like in the computer I was starting on December 19th, which proved correct, but when I spoke to the schedule coordinator that same day, she said she has no idea yet, is the one who schedules, and treatment plan wasn't completed.
My cardiologist, who I visited on Tuesday has to send a clearance letter that I can start chemo, which he verbally gave me the ok, so had to call his office too, and the oncologists doctor's office manager said she was going to call yesterday, and today I have to do so.
As I already learned, you have to do the work and coordination most others in the medical profession should be doing, and are either too lazy, not competent enough or playing stupid to do themselves. Getting tired of this nonsense, and I didn't even start treatment yet lol. I just feel sorry for the next person that steps out of line with me cause their going to get a mouthful from me. I already don't like the schedule coordinator, and haven't even met yet, based on their doings, availability, demeanor, and tone of voice on the phone.
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Oh Paul. This is so frustrating. However I admire your self control. I would have lost it long ago. I hope your driver is organised and you get some assistance with all these costs. I also want to wish you a happy Christmas. I don't suppose it will be too merry. I will think of you on the day and say a silent toast , praying too that this treatment does what it is supposed to do. Happy Christmas and here's to a Healthy 2014. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Thank you for the thoughts, Tammy. I think I'll be ok for Christmas eve, day, at least, with only two radiation treatments under my belt by then. Still concerned going into something that has a 20% risk of death for me, basically from carotid bleed, aka blowout, but another RO, with lesser experience, says it's a little over 5%. Both are stil high to me lol, but really have no other choices, except do nothing, which is hard for me to do, and I like to strike back first!
Happy holidays!
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: Jan 2013 Posts: 57 "OCF Canuck" Supporting Member (50+ posts) | "OCF Canuck" Supporting Member (50+ posts) Joined: Jan 2013 Posts: 57 | Good luck Paul happy holidays looks like we will have a white Xmas up here
46 yr old non smoker moderate drinker Lump on neck Dx branchial cyst by fna mar 2012 Op to remove dec2012 biopsy back hpv 16 scc Starting rads jan 31 no chemo docs say? Finished mar13 Pet scan june 30 NED :))) Back to work and enjoying life Checkup aug 12 all good
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Paul,
Keep up the good fight and enjoy the holidays as best you can. Don
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Thanks Don, I will! Lining up my menu already lol, all seafood on Christmas Eve, linguine with octopus puttanesca, Caesar salad, bacala salad, fried calamari, and shrimp. For breakfast Christmas Day, Panettone eggnog French toast, bacon, bagels with smoked salmon, cream cheese, onion, avocado, juices. Maybe ham or duck for Christmas Day, lasagna, if I feel up to it, mashed potatoes maybe with carrot or turnip or just roasted, shrimp cocktail for appetizer. I'll probably wing it, and like the soup Nazi sometimes, "No Food for You!" If anyone acts up lol.
Enjoy yours as well, Don, and Doolittle.
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 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Dude I like your rads dr. I was about to say the same thing he did... The minute they offered it tomorrow - I woulda been there with bells on even if I had to kidnap one of santas reindeer to do it. this is NOT something you wait to do - because it's inconvenient. No one wants to go through treatment during Christmas I totally get it but I'd be willing to forfeit this one to live to see another one. Kudos to him. And as always hugs to you.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Thanks, it was much more than the holidays, if at all. My oncologist has to approve my getting chemo, and with a days notice, I didn't know what was possible, when I could start, and asked to call back, but person was impatient, plus I'm having an echocardiogram on Monday, as part of my chemo check-up requirement, and still need a stress test, and cardiologist had to give approval to my oncologist. Also, I have no way of getting there, and have to pay someone, have to come up with $375 a week on a fixed income, and give them notice also, and didn't know their availability at the moment, and already told my driver it didn't look like I was starting next week, and been doing this week to week. All was needed was a little cooperation, and coordination from the radiation center, and funny how the concierge knew when my start date was 4 weeks ago.
After 8 different cancer treatments, 8 recurrences, 4 years continuously having something done, hundreds of doctor visits, tests, it is and has been an inconvienance for everything, hurry up and waited plenty.
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
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