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Joined: Mar 2006
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Thank you Marie-Lyne.


Father diagnosed 3/06, Poorly Differentiated Carcinosarcoma BOT Primary. T3N2bM0
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My father was diagnosed in January, 2006 and had a modified left side neck dissection Feb. 10, 2006. He handled the surgery well and we are about to begin radiation on Monday. He had his first chemo treatment last week. Scott, I was unable to convince my father to go to a CCC so the local doc's are handling his case. Although we are just beginning things seem to be going ok and this website has been a tremendous help in comparing treatment options. Because my father would not go to a CCC, I needed somewhere to go to compare the treatment his was receiving to what was considered the best available. I don't know your father's situation, but my father, age 66, was in better health than me and has never smoked so this diagnoses was a shock. Although any cancer diagnoses no matter what your situation is always a shock. My father is trying the new drug recently approved for head and neck cancer, Erbitux. He refused a PEG, so the oncologist wanted to get some chemo into him and felt this would be a good choice. Keep your chin up Scott and I like others on this board would recommend being very active in your Dad's treatment. You can never have enough ears. I have a notebook I take to all the doctor visits and even though I don't remember writing alot of the items during the visits they have become an invaluable reference tool as questions come up.
Our thoughts are with you and your family.


Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT.
25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
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Sue --

We spoke last week to a new patient starting treatment at Johns Hopkins (one of the top CCCs) and he is getting 33x radiation and Eribitux, only -- he has a base of tongue tumor so they don't do surgery on that if it can at all be avoided, but he may have a neck dissection after the radiation if warrented (he has spread to two nodes). So it sounds as if your dad is getting very similar treatment.

We are seeing my husband's RO tomorrow for a check-up and we plan to ask about whether they are starting to use Eribitux alone instead of more conventional chemo, or whether this is case-by-case and if so, what the decision is based on. The RO was involved in several Eribitux trials...

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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Gloveman,
My husband had BOT cancer also. He was T1N2bM0 and considered Stage 4. The tumor was small that is why it was T1 but because of lymph node involvement N2b it was a Stage 4. I think his was well differentiated. His ENT at the Cleveland Clinic (who is now at Duke) would also not do surgery on the base of tongue. Treatment was radiation 7 weeks with two types of chemo 96 hours the first and fourth week, followed by a neck dissection two months after treatment ended. The tumor on the BOT was gone but they did find mircoscopic cancer cells in the perionodal tissue in his neck, removed it along with a number of lymph nodes. The ENT had left the decision of a neck dissection up to him but strongly recommended it. It was a good decision. He's 17 months from the start of treatment and everything looks okay. He was misdiagnosed by his first ENT but luckily his ENT at the downtown campus of the Cleveland Clinic was persistent.

If the opinion of MD Anderson is the same or different than your local ENT I personally would still be treated at MD Anderson if at all possible.

Hope everything goes well.

Teresa

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Thank you Gail so much, let me know if you have any additional information. Thank you again to Brian for this website of wonderful people.


Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT.
25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
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