| | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | I think what Waldeau is confronted with is the fact that they are currently in treatment. How can they stop the IMRT treatments to run off for a second opinion? I assume she wants to get through the IMRT before seeking out the other options.
Thats a tough call. I would definitly start looking for folks with some sort of exertise in this particular mets to the lungs problem. I would get as many referals as I could and start thinking about who I would go and see. Some might be able to give some guidence just from the information you can send them, so I would ask my current medical folks to put together a disc that you can send out with all your reports and film on it. I would start with that ASAP.
At some point you will have to get to another facility to have them make a more definative call. I would not let your current folks make that call as they do not seem to know what to do.
I would sart getting discs out to as many folks as I could as soon as I could. At least you will start to get an idea of who can help and who can't
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 26 | Kelley, Thanks!!! I will follow up with this!
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: Dec 2012 Posts: 26 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 26 |
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: Dec 2012 Posts: 26 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 26 | To all of you - thanks for your wise words. You folks have helped me turn a corner here. I am indeed going to get proactive and get supplemental opinions I also no longer am feeling like it's be the right thing for me to do to simply look for the closest, cheapest exit. You've been a big part in changing my outlook. Please accept my most sincere thanks.
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) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | You can down to NYC for a consultation if you like, being you are upstate NY. There are are some of the best ccc hospitals, doctors for Head & Neck Oncology, Surgery here....Memorial Sloan Kettering, Mount Sinai, Columbian Presybeterian, Beth Israel, New York University.... For treatment, you can stay at American Cancer Society's Hope Lodge on West 32nd street, and it's free, or do thier tretmrnt protocol locally, except surgery.
Take care
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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