| 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 | Or ever!!! Eeeeuw!!! At least go for a gourmet burger if you must masticate a critter! Sorry - I'll stop hijacking...
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: Apr 2012 Posts: 13 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Apr 2012 Posts: 13 | Thanks alot everyone I'm glad he's feeling better too. Not sleeping great but so much better than b4. We finally have a date for surgery, Mar 20th. I'll be glad once he's safe back home and this is behind us. I've shared your comments with Mike, he feels better knowing its not worse than rads! I'll keep you posted! Joseee
CG to Mike, diagnosed SSC base of tongue March 6/12, T2N2, Stage 4, 35 rads, 3 cisplatin, hospitalized end of treatment TPN nutrition lost 50lbs. lymph nodes in neck necrotic tissue Jan /13, radical neck dissection March 20 positive SCC could not remove all
| | | | Joined: Apr 2012 Posts: 13 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Apr 2012 Posts: 13 | Well, we haven't had the few weeks we thought. Mike's surgery lasted 5.5 hours. The doctor came to me and explained that the upper surgical margins near the base of Mike's skull were not clear and there was nothing more he could do due to the proximity of important structures. It all came back cancerous from the biopsy, even the extra sample from the margin that was not clear. They told us last week he can't have any more radiation in that area because it had max dose last year. They have said there is a zero percent chance of a cure now. We meet with chemo for info on whether they can do anything to slow it down. This is very hard. Any ideas for extending Mike's time? Dietary etc? Josee
CG to Mike, diagnosed SSC base of tongue March 6/12, T2N2, Stage 4, 35 rads, 3 cisplatin, hospitalized end of treatment TPN nutrition lost 50lbs. lymph nodes in neck necrotic tissue Jan /13, radical neck dissection March 20 positive SCC could not remove all
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Im very sorry to hear this update. Is it possible to have a second opinion at another top facility?
As far as your dietary concerns, a healthy diet is always better. I dont know of any scientifically proven studies which support it extending anyones time. Unless it has been scientifically proven thru years of studies it wouldnt be something that anyone here would know about. They may be able to suggest some healthy ideas but at this time there isnt anything non-medical that can reverse this. Im very sorry!!!
Best wishes with everything you are dealing with. Im sure its very difficult for you right now, my heart goes out to you. Is hospice something available as a resource for you in Canada? Ive heard they can help tremendously. They are specialists and know how to handle a situation like this. ChristineSCC 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 | | | | Joined: Apr 2012 Posts: 13 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Apr 2012 Posts: 13 | We are considering another opinion but we know we are at one of the best facilities in the area. There is a hospice near us. Thanks I will let u know what his chemo doctor says. he is also head of palliative care for the cancer centre.
Josee
CG to Mike, diagnosed SSC base of tongue March 6/12, T2N2, Stage 4, 35 rads, 3 cisplatin, hospitalized end of treatment TPN nutrition lost 50lbs. lymph nodes in neck necrotic tissue Jan /13, radical neck dissection March 20 positive SCC could not remove all
| | | | 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 | As suggested, I would see about a 2nd or 3rd opinion. You may want to look into High Dose Intraopertive Radiadion Therapy (HD-IORT), Brachtherapy, Radiosurgery aka Cyberknife. These are high dose radiation treatments in less time, to specified areas, while certain vital organs or structures are protected. Not all CCC will tell you all the options available or send you elsewhere. I had 5 recurrences. I had positive margins, LVI, PNI, after my 2nd neck dissection, and cancer did return as expected, but in a month. The next treatment I had, for a cure, was a neck dissection, my 3rd, along with HD-IORT during surgery, with a pec flap, so radiation could be done a 3rd time, along with chemoradiation for 5 weeks. In total, I had 130Gy of radiation, and some here about the same or even more. Reirridation is limited to the toxicity level of vital structures, but can be done in ways described above, and this is where the doctors experience, and training comes into play.
Good luck, and hope this helps.
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: Apr 2012 Posts: 13 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Apr 2012 Posts: 13 | We are considering whether or not to have a second opinion. We will decide once we see his chemo doc on Thursday. We asked the radiation doc last week about brachytherapy, He said no because it is in the same location and max dose has been reached already.
Will keep you posted Josee
CG to Mike, diagnosed SSC base of tongue March 6/12, T2N2, Stage 4, 35 rads, 3 cisplatin, hospitalized end of treatment TPN nutrition lost 50lbs. lymph nodes in neck necrotic tissue Jan /13, radical neck dissection March 20 positive SCC could not remove all
| | | | 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 | Radiation treatment dosage is usually around 70Gy, but there is usually more they can do the 2nd time, in my case a 3rd time using different types of treatments, and radiation techniques with dosage and volume, and by protecting the vital structures like brachial plexus nerve, and others that have lower toxicity levels, and use flaps for protection, and sometimes to do more radiation. As you probably know, chemo is not a cure, only radiation and surgery is. If the doc said, no, which happened to me twice, I looked elsewhere, and found an excellent doctor that did a type procedure I was looking for, for a cure. 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: Jan 2013 Posts: 1,292 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,292 Likes: 1 | Josee,
So sorry to hear the current status. I know you are down and have every right to feel somewhat defeated but do not give up. It is too early in the war. Just because this one dude throws his hands up and says "done - no cure" is NO reason to quite. This is one person's opinion.
Listen to Paul and the others who have had recurrences and all sorts of therapies that exceed "standard of care" guidelines, and that is what they are, not rulings from the Supreme Court.
Seek out other opinions until you find one that offers some alternative hope and options. Of course, QOL issues weigh the other side of the scale but at least you can then make a more informed decision as you have a wider range of paths forward.
Hang in there, this is only round one! You go girl!
oh - and NO just means to say thank you and make the call next on the list!
Last edited by donfoo; 04-09-2013 10:37 AM.
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) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Well said, Don. We have similar thoughts.
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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