| | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) |  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Get the Boost VHC which is the same size can but packs appx 560 calories. You can order it online through Amazon.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2013 Posts: 7 "OCF Canuck" Member | | OP "OCF Canuck" Member
Joined: Dec 2013 Posts: 7 | So an update with my dad:
Ct scan confirmed that the tumour has metastasized from his tongue into his carotid artery. It has wrapped itself around the carotid artery and so the doctor said that if they do the surgery, he will die during surgery because of the location of the tumour. He told my dad that there is nothing he can do and he is terminal. Words can't describe how heartbroken we all were when we heard this news. My dad will pass away in the next 6 months.
Caregiver to dad, 63, non-smoker, non-drinker, health conscius and active with no health problems of any kind before OC
Diagnosed with stage 3/4SCC in May 2013 after biting tongue and not healing on right side of tongue with lymph node involvement HPV-
Treatment was 7 weeks of radiation and 3 rounds of Cisplatin
In remission for a few months
Cancer has returned and can't do radiation and chemo because too weak at 106 pounds
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | I had my left carotid artery removed on 10/24/13 due to the tumor being wrapped around it. They can do a cervical angiogram, and a temporary balloon occlusion test to see if he is a candidate of a carotid resection. I passed, and the arterty was removed during the neck dissection, then IORT during surgery, and now going for Chemoradiation with protons. There is risks with all the procedures, but can be done, but may not be done everywhere, and mine was were in NYC. I have one working carotid artery. Sometimes the scanning is not that accurate, and may not involve the carotid artery from my understanding.
Good luck
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: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | I was going to say that Paul here has had the same diagnosis and he's doing great... I would talk to your dr if he/she is still unwilling to remove the tumor pus for a second opinion elsewhere. Hugs.
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: Dec 2013 Posts: 7 "OCF Canuck" Member | | OP "OCF Canuck" Member
Joined: Dec 2013 Posts: 7 | Paul where in New York was it that they did it ? And cheryl yes you are right , gonna go for a second opinion but not with the same doctor, he was pretty clear about not wanting to do it.
Caregiver to dad, 63, non-smoker, non-drinker, health conscius and active with no health problems of any kind before OC
Diagnosed with stage 3/4SCC in May 2013 after biting tongue and not healing on right side of tongue with lymph node involvement HPV-
Treatment was 7 weeks of radiation and 3 rounds of Cisplatin
In remission for a few months
Cancer has returned and can't do radiation and chemo because too weak at 106 pounds
| | | | | Joined: Dec 2013 Posts: 7 "OCF Canuck" Member | | OP "OCF Canuck" Member
Joined: Dec 2013 Posts: 7 | Paul where in New York was it that they did it ? And cheryl yes you are right , gonna go for a second opinion but not with the same doctor, he was pretty clear about not wanting to do it.
Caregiver to dad, 63, non-smoker, non-drinker, health conscius and active with no health problems of any kind before OC
Diagnosed with stage 3/4SCC in May 2013 after biting tongue and not healing on right side of tongue with lymph node involvement HPV-
Treatment was 7 weeks of radiation and 3 rounds of Cisplatin
In remission for a few months
Cancer has returned and can't do radiation and chemo because too weak at 106 pounds
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Beth Israel Medical Center in Manhattan, part of Continium Health Care, did my surgery. They did the angiogram, balloon occlusion test at Roosevelt Hospital's Center for Endovascular Surgery, which is one of their hospitals. My RO, and ENT worked all that out. They do amazing work at Beth Israel, especially my RO who is a HNC expert, and no stop in this doctor, surgeons too. This was part of the IORT, Intraoperative radiation treatment, and now doing Proton Radiation, chemo. All of the doctors there are from MSKCC or Mt. Sinai.
Good luck.
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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