| | Joined: Oct 2012 Posts: 118 Senior Member (100+ posts) |  Senior Member (100+ posts)
Joined: Oct 2012 Posts: 118 | Katie,
You should talk to speech pathologist at yur cancer center. They all sorts of things you can do for the voice.
Bette/CG to husband Reggie 66
dx 1: SCC Soft Palate (12/06)
tx: chemo and rad
dx 2: SCC 6 cm tum rt. vocal chord (12/09)
tx: total laryngectomy with stoma, 2 nodes
dx 3: SCC 4 cm tum BOT (10/16/12)
Tx: partial gloss w/ mod deck dis 4 nodes incl. part. pharyngectomy
| | | | | Joined: Oct 2012 Posts: 33 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Oct 2012 Posts: 33 | I have been doing my forum research on this topic. I am a bit relieved to hear that not everyone had the same results. As long as I live to meet my grandchildren, right?
10/2/12 Surgery Dx Stage II SCC RLT
11/12/12 Further tongue resec and SND. 3 of 22 lymph + SCC Stage IVa
11/22/12 Hospitalized for infection incision at neck
12/5/13 PET scan tumor at BOT
12/26/12-2/27/13 RT and Cisplatin
4/1/13-5/17/13 3 rounds of Cisplatin, Taxotere and 5-FU
7/19/13 Pet Scan possible recurrence
8/23/13 2nd op at MSKCC, CT Scan
8/31/13 MRI. Both show sizeable mass
9/11/13 CT-guided needle BX + SCC
10/1/13 Erbitux, Cisplatin and Taxotere
2/14/14 Passed away
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | That's the attitude Katie, however there are proactive things you can do before, during and after treatment with the help of a Speech and Language Pathologist that will help in recovering and QoL issues. The earlier you start the better your chances are. JenSLP on the forums is a OC survivor and notable Speech pathologist who works with patients going through treatments. Her and I speak together on the subject and I trust she will be of help.
I would enjoy all of the foods you love between now and treatment, I didn't do enough of that myself and over 90% of my nutrition is via a liquid diet. It's not all about "bulking up" though as the weight typically lost during treatment and due to stress is lean muscle mass and not adipose tissue (fat). Consider this when going through treatment as 20% of "all" cancer patients die of malnutrition, not cancer or the treatment of.
Keep your chin up and do get that second opinion, it's just prudence. The best advice anyone can ever give you is to seek the absolute finest medical opinion available to you, and MSK is one of the finest in the country.
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | 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 | Good luck Katieb - attitude is everything. 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: 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 don't know if you had you meeting with MSK yet. The other two hospitals mentioned, Columbian Presbyterian, and Mount Sinai are the top hospitals in NYC, and country, for cancer and ENT, so that's why your local doctor mentioned to go there. I went to Mt. Sinai. If you go to any of theses, and you should, they would want to do all your treatments with their multidisciplinary team of doctors..MO, RO, ENT, and others. If the commute is too long, over an hour, there is Hope Lodge NYC where you can stay. I did for 6 weeks, and it's a luxury 12 story residence for cancer patients and a caregiver with all sorts of actives and convienances, and it's free. MSK has a shuttle bus every 1/2 hour to pick you up from the Lodge on 32nd street to MSK.
Good luck with the PET, and as mentioned, get all your records since another institution will need them for consultation and or treatment.
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: Oct 2012 Posts: 33 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Oct 2012 Posts: 33 | I am in the process of getting in to see the head of head and neck cancers at MSK in NYC. I have my pet scan this Wednesday, and this afternoon I had my dental appointment. I got impressions made for a fluoride tray. I need to have a root canal redone on an upper molar but the rest of my teeth are fine.
I don't have dental insurance and was wondering if any of you in similar situations were able to send the bills to your medical insurance? I mean, my teeth are going to be damaged due to a medical condition. Am I dreaming that there's a way around having to pay for all of this?
10/2/12 Surgery Dx Stage II SCC RLT
11/12/12 Further tongue resec and SND. 3 of 22 lymph + SCC Stage IVa
11/22/12 Hospitalized for infection incision at neck
12/5/13 PET scan tumor at BOT
12/26/12-2/27/13 RT and Cisplatin
4/1/13-5/17/13 3 rounds of Cisplatin, Taxotere and 5-FU
7/19/13 Pet Scan possible recurrence
8/23/13 2nd op at MSKCC, CT Scan
8/31/13 MRI. Both show sizeable mass
9/11/13 CT-guided needle BX + SCC
10/1/13 Erbitux, Cisplatin and Taxotere
2/14/14 Passed away
| | | | | Joined: Jul 2012 Posts: 47 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2012 Posts: 47 | If you end up going to MSKCC, they will assign a team of doctors to you and ask you to see the dental oncologist prior to treatment. I just had a check-up but I know that was applied to my medical insurance, not dental. Sorry I do not have any more info. Let me know if you have any questions about MSKCC, I just finished rad treatments there last week.
Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.
Jessica, age 38
| | | | | Joined: Oct 2012 Posts: 33 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Oct 2012 Posts: 33 | I went to the dentist on Monday and had a root canal retreated on Tuesday. Today I have my pet scan. I stupidly forgot to be on the low carb diet and had some pasta for dinner. Will that throw things off tremendously? I'll let them know. I got my records forwarded to MSK and hope to hear today about an appt. time. Meanwhile the radiation oncologist at Morristown recommended I see the medical oncologist. I hope to start this radiation treatment the week of the 17th.
Jessica, I am either going to see Jatin Shah or one of his colleagues at the MSK in NJ. I will be relieved once I have that second opinion so I can feel better about the decision I make.
10/2/12 Surgery Dx Stage II SCC RLT
11/12/12 Further tongue resec and SND. 3 of 22 lymph + SCC Stage IVa
11/22/12 Hospitalized for infection incision at neck
12/5/13 PET scan tumor at BOT
12/26/12-2/27/13 RT and Cisplatin
4/1/13-5/17/13 3 rounds of Cisplatin, Taxotere and 5-FU
7/19/13 Pet Scan possible recurrence
8/23/13 2nd op at MSKCC, CT Scan
8/31/13 MRI. Both show sizeable mass
9/11/13 CT-guided needle BX + SCC
10/1/13 Erbitux, Cisplatin and Taxotere
2/14/14 Passed away
| | | | | 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 | It could effect the test. The nuclear tracer, 18FDG, has glucose, which highlights metabolic activity like tumors, which are glucose sensitive. Exercising, talking, even swallowing during test can even highlight the the glucose activity in the muscles. You are not supposed to exercise 48 hours before the test, eat a low carb 24 hrs, not eat 6 hours before test, no heavy lifting day of test, drink 16 ounces water an hour before injection, and relax before test. Call the place of testing, to let them know. 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: Jul 2012 Posts: 47 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2012 Posts: 47 | I went to MSKCC in NYC so I am not familiar with Dr. Shah but best of luck!
Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.
Jessica, age 38
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