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joseel #162584 03-09-2013 08:17 AM
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Or ever!!! Eeeeuw!!! At least go for a gourmet burger if you must masticate a critter! smile

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
joseel #162739 03-12-2013 01:21 PM
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Thanks alot everyone smile 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
joseel #163826 04-09-2013 05:44 AM
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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
joseel #163827 04-09-2013 05:50 AM
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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.


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
joseel #163828 04-09-2013 06:29 AM
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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
joseel #163829 04-09-2013 07:00 AM
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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






joseel #163831 04-09-2013 07:16 AM
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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
joseel #163833 04-09-2013 08:15 AM
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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






joseel #163837 04-09-2013 10:37 AM
Joined: Jan 2013
Posts: 1,291
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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
donfoo #163842 04-09-2013 11:43 AM
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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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