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Joined: May 2008
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KyleS Offline OP
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Hello,
My husband and I were told today his cancer is now back for the 3rd time in 1 1/2 years. Our Dr. at UCLA has said there is nothing more surgery, chemo or radiation wise they can do. They have thrown the book at this and it's still returning. They want to put a traeche in next Thursday to help with his breathing. The Dr. is willing to help us in anyway he can in regards to clinic trials, referring for a 2nd opinion, etc...
My husband and I are realizing the cancer is winning but we have to get another opinion to help with our acceptance of this. I know there are a few good hospitals in Texas and NY but I'm just curious what some of your opinions are. Many of you have actually been treated at these facilities. Please, where would any of you suggest we go for a fairly quick, knowledgeable 2nd opinion. We will fly anywhere in the U.S.
Thank you by the way for all your support.
Sincerely, Tamara

Kyle - 44 years old - non smoker/very casual drinker. Father of two little one's. Live in Ventura County, CA.
03/07 - squamous cell in left side of tongue removed. Chemo/Rad followed.
06/08 - tumor removed from part of tongue, base of mouth, left jaw, part of neck area. Chemo/rad followed.
10/08 - Now Petscan shows tumor in front/left part of chin under the flap (base of mouth). Has had fluid draining from this area into his mouth and under his chin.


Kyle - 43 years old. Non smoker, casual drinker.
03/07-Tumor removed in tongue, chemo/rad
06/08-Tumor removed in base of mouth, left jaw removed, part of skin on neck - followed w/chemo/rad.
10/08-New tumor already growing.
Joined: Jul 2008
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I would suggest checking MD Anderson in Houston
Best of luck


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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MD Anderson and Johns Hopkins would be my choices. Sorry this is happening and I wish you all the luck in the world.


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.
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Before you go flying cross country, consider doing it virtually first. Take up your doctor's offer to do whatever he can by asking him/her to make digital copies on CD of all the tests, scans, and even the doctors' reports themselves plus full medical history. Then call Anderson, John Hopkins (and I would add Lombardi CCC in Washington DC based on their candid assessments with me) and get proper email addresses and mail addresses. Most CCCs will do a preliminary workup from the data even if you were to go in person. This way, if one of them does offer hope- you can fly out in person to follow up. Just a suggestion as I found air travel to be daunting with delays, security confiscating my water despite dry mouth and doctor's note, sick travellers pummelling my immune system with coughs and sneezes and this was after treatement and recovering. Good Luck.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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When I was first diagnosed, my ENT offered to send all my files to MD Anderson for a second opinion if I wanted (I declined because they had already been in contact with MD Anderson discussing treatment options and I really liked my ENT). Maybe your doctors could do the same that way you could save on travel and most doctors have a good network of contacts so they would know who to contact.


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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KyleS Offline OP
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Thank you for your posts. We are looking at sending his records to MD Anderson. I spoke with them and it sounds like they review your records and if they feel they can offer anything they then invite you for a consultation. It sounds like they will not bother meeting with us if they feel they have nothing more to offer.
My husband is already feeling poorly and is leaning towards another Southern, CA location for a 2nd opinion. There is Cedars, City of Hope, UC Irvine and Saint Josephs. Anyone have an opinion one way or the other on any of them? Our Dr. suggested a Dr. at UC Irvine so we may go with him.
It's frustrating that getting records, images, etc.. takes so long. It would be nice to get a 2nd opinion immediately but we are looking at a few weeks I'm sure.
They want to put a traech in his throat on Thursday at UCLA. I hope that does not upset him in regards of getting another opinion.
Thank you for your help.
Tamara


Kyle - 43 years old. Non smoker, casual drinker.
03/07-Tumor removed in tongue, chemo/rad
06/08-Tumor removed in base of mouth, left jaw removed, part of skin on neck - followed w/chemo/rad.
10/08-New tumor already growing.
Joined: May 2007
Posts: 104
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Tamara, this is so frightening! My daughter had a consult at MD Anderson, after sending all info there. I would feel comfortable with their opinion, after our experience and several others. They could not help her. We did come back to U of Chicago and she had radical surgery, etc but the caner had already become voraciuos.
My heart goes out to you and your husband. He has already battled so strongly. I hope for you.....
I think there are people here who have been treated at City of Hope and been comfortable w/ their care/opinions.
Linda


Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
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I got my second opinion at MDAnderson and was seen within two weeks of my self-referral online. I was thoroughly worked up by an outstanding team and I do believe my outcome was radically changed for the better by having treatment there. They will give you an honest assessment of whether or not there is anything they can do for you. I wish you and your husband the best.

Susan


Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
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I went to Sloan- Kettering in NYC for a second opinion, it took a month to work it out. They were very intelligent and up to date. M.D. Anderson is more than worth the effort. Get on a trial. You get great care and hope for remission or at least non-progression. I'm on one right now. Find one in the area where you live. Also try an alternative medicine you can belive in. Main thing is Keep Trying, Don't give up! Many many people have survived much much longer than expected! Tom


SCC Tonsil Rt T3 N2b M0 side DX Jan 04 Tx 36 Rad 3 cisplatin Tx ending May 04. partial neck dissection july 04..... July 15,08 mets to liver Age 57...Did Methotrexate Sept 08. Now on a trial drug Panitumumab, Feb4,09 treatments stopped. going to Tibetan Medicine.

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