| | Joined: Jan 2011 Posts: 49 Likes: 1 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jan 2011 Posts: 49 Likes: 1 | I signed on as a result of my recent diagnosis of squamous cell carcinoma of the back of the tongue and found the world became a much smaller place. People I don't even know are offering support and care!
I have appointments this week to learn what treatment is best for my cancer. Any advice is welcome.  | | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Welcome.
This is a great place and you will find lots of support and terrific information from all of us who have walked the path before you.
When you get a chance, go to the top of the page, "My Stuff"..."Profile"..."Signature" and put your information there so we can see your history and help you even more. See my signature below...you can use any format you wish. Don't worry that you don't have all the facts and abbreviations down yet..you can fill that in as you get it.
Best to you during this initial stage..it's not easy.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Welcome Chris,
I'm glad that we got the chance to speak on the phone earlier. You will be in good hands with Fox Chase and you new found family here on the forum.
As I said on the phone, you can call me anytime.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Welcome to OCF!
you are in good hands both medically and having Jerry available for support! That's awesome, very glad you've found this site and these forums!
Good luck and keep the great attitude!
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Nona
Welcome to OCF. Be sure to insist that your doctors order a blood test for TSH (thryoid hormone levels) now, before any radiation. That way after radiation, you will have an accurate baseline to compare and get your energy back. Without a pre radiation TSH blood test, it's very hard to tell whether you need to take a thyroid pill
While my CCC doctors were top notch on Cancer, for related issues like Thyroid - "not so much". I was not only extremely tired but also froze for two years, even in summer, and kept a winter coat on in air conditioned places yet I was constantly told: "Your TSH levels are normal" and I did not ask for the actual numbers or test results. Turns out however there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 even though endocrinologists who went to Medical school the 21st Century consider 3.0 as the highest acceptable level. Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3. Now that I am "on the pill", I am finally warm again. Plus my energy is back My TSH level went down to 1.48 since I switched to taking it at night
Welcome to OCF
charm
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
| | | | | 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 | Thats great that you got to speak with Jerry. He is a great guy!!! Im proud to say Jerry is my friend.
As I mentioned in my other post to you, try to eat everything you can now. No matter what treatment plan you get, your eating will be affected for a while.
Best of luck with your upcoming appointments.
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: May 2010 Posts: 224 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2010 Posts: 224 | is it the base of your tongue, or still kind of on the side but near the back? Either way, I will be thinking of you and sorry you had to find this forum, but glad you did, they helped me through my treatment and I know they will for you!
25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
| | | | | Joined: Jan 2011 Posts: 49 Likes: 1 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jan 2011 Posts: 49 Likes: 1 | Thanks so much to all for your warm welcomes. God does put one in the right place, I just didn't really understand until this happened.
I will ask about the TSH. I am freezing a lot but I never thought of the thyroid issues.
My SCC is BOT to above the epiglottis. I believe that is right and there are a couple of lymph nodes involved. I hope to know more after meeting with the oncologists.
Jerry is perfect! He let me call him at a ridiculous hour on a Saturday morning. Be in touch.
63 years old
Nona to Alora, Emery, Ilyana, Harper, Nolan, & Rory. Yogini since 2012. Namaste.
Diagnosed 10/5/20 Oral Cancer/ RT side of tongue SCC Stage I Partial Glossectomy 10/23/20 Right Neck Dissection 12/4/20 Clear Nodes
BOT SCC 1/18/11 Stage IV N3 M0 HPV+ Port2/18/11
Treatment start 2/22
CISplatin 2rnds, Rads:35 treatments
July 12 doctors' deemed me cancer free-port out July 18.
Non-smoker, was a light-drinker No drinking since diagnosis
| | | | | Joined: Jan 2011 Posts: 49 Likes: 1 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jan 2011 Posts: 49 Likes: 1 | I heard you are especially amazing!
Glad I share my first name with you.
63 years old
Nona to Alora, Emery, Ilyana, Harper, Nolan, & Rory. Yogini since 2012. Namaste.
Diagnosed 10/5/20 Oral Cancer/ RT side of tongue SCC Stage I Partial Glossectomy 10/23/20 Right Neck Dissection 12/4/20 Clear Nodes
BOT SCC 1/18/11 Stage IV N3 M0 HPV+ Port2/18/11
Treatment start 2/22
CISplatin 2rnds, Rads:35 treatments
July 12 doctors' deemed me cancer free-port out July 18.
Non-smoker, was a light-drinker No drinking since diagnosis
| | | | | Joined: Sep 2009 Posts: 177 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 177 | Welcome to the forum. This is an amazing place. I am so glad you found it before your treatment begins. I wish I had. You will be able to understand your diagnosis and treatment so much better. Take Care and God Bless!
Wendy
Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
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