#21565 11-18-2006 11:09 AM | Joined: Nov 2006 Posts: 166 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Nov 2006 Posts: 166 | Hello OCF patient forum members. I was diagnosed with SCC in the left tonsil and stillar area on 10-16-06 and I am to begin chemo treatments 11-27-06. They decided to give me a shot at a turkey dinner. I am being treated at Emory University Winship Cancer Institute. I am going to be in a trial study consisting of only chemo for now. They think the chemo will shrink the 2 nodes and tumor area to where I should not need to have radiation. Worst case scenerio is I start a radiation regimin if they don't shrink. It consist of 3 chemo treatments, 21 days apart with Docetaxel, Cisplatin, and 5fluorouracil. Has anyone been or going through this study? My doctors are very optimistic about this and from what little I can find out online there seems to be some sucess coming out of this. If nobody has gone through this study, does anyone have any input? I am going to beat this either way cause I have plans for the summer and this won't stop me.
Bill B. Dx 10-16-06 Stage 4 T2N2bM0 SCC Left Tonsil,3 nodes. 1st tx 11-28-06, last tx 1-8-07. 3x Cisplatlin, 5fu pump, and Doxetaxel. Modified neck dissection,20 Nodes removed, all clear 02-21-07. HPV+,33 IMRT start 3-22-07 70GY,Completed 05-04-07 | | |
#21566 11-18-2006 02:41 PM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2006 Posts: 493 | Bill B,
Welcome to OCF. Sorry that you are here, but glad you've come to the right place. I hadn't heard of just chemo for the first treatment. I really hope it works for you. You are being treated at a really good treatment center.
Keep us posted. And welcome again.
Tim Stoj 60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#21567 11-18-2006 02:48 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Bill, eat a bunch from Thurs. thru Sunday and remember, summer isn't very far away. Best luck. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#21568 11-18-2006 03:50 PM | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2006 Posts: 388 | Hi Bill - You will be able to follow thru on your summer plans, I can tell. But let us know how the chemo-only treatment works for you. Please keep in touch with this OCF forum. Best of everything to you. JaneP
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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#21569 11-18-2006 05:09 PM | Joined: Nov 2006 Posts: 6 Member | Member Joined: Nov 2006 Posts: 6 | Hi Bill,
My best to you and eat away over Turkey Day. I'm new here also and have SCC at tongue base. I will begin chemo & radiation on 11/28. Will be getting a feeding on Monday 11/20 -- it's all so overwhelming and I starting to wonder will I be able to go through the treatments. Glad to have found this board, thanks everyone for the info. | | |
#21570 11-18-2006 05:26 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | To emagster, Welcome and I hope you eat alot over Turkey weekend also[we always plan for lots of leftovers at our house] I am in the "Yes to the feeding tube" camp, so I am glad to hear you will have that to rely on. Diagnosis and tx. is overwhelming, but as long as you have the energy to learn about what is happening, and research the wealth of information on this site, and keep posting your questions and concerns, you WILL get through the tx.It won't be a "walk in the park", but it is doable [keep reading] and sometimes scary. Do you have a support system? Please tell us more about you. Best luck to you. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#21571 11-18-2006 05:39 PM | Joined: Nov 2006 Posts: 6 Member | Member Joined: Nov 2006 Posts: 6 | Hi Amy, Thanks for your post. I have been reading these posts and definitely gaining more information than I have gotten from my doctors. I got my news on Nov. 2, and just been catch up in the medical maze since then. T2N0M0 = 7 weeks of radiation, 4 treatments of chemo (Cisplatin (Platinol); plus some thing called Amofostine. I am single and work full-time, Amy do you think I can still work or does one go on Disability? I have friends who have been great getting me to apptmts. but it's really hard to ask (or expect them to do so much). I'm in California and my sister from Florida said she would come out but my goodness, she has a family and job. Amy, thanks again and have a pleasant Thanksgiving. | | |
#21572 11-18-2006 05:59 PM | Joined: Nov 2006 Posts: 166 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Nov 2006 Posts: 166 | Folks, I did not try to imply I was on a Sunday stroll and if that is how it came across I apologise. When my dr. approched my wife and I about this and he explained the study, he gave no promises of easy cure. I am still if I remember correctly a t2n2bmo and there are some risk. I was just wondering if any body else had been approached about this study. To Stoj and JAM I have read several of your postings and it seems you two are very active in this forum. I hope I can come here with questions or thoughts that we don't ask the drs. and I would love to find the support for my family as well as my wife here. From everything I have seen this is a pretty cool gig and I (we) would really like to be a part of it.To Emagster, I was set up for a PEG on 11-20 but this study prohibits the use of one. From everthing I have learned about it it seems like a GREAT back-up because of what the rad treatments will do to your throat. Weather or not you will be able to make the treatments email me and we can compare notes and talk about what is going on. You can make it through this because GOD won't put anymore on us than we can handle. From what I have seen here there is a boat load of support for just about any situation.
Bill B. Dx 10-16-06 Stage 4 T2N2bM0 SCC Left Tonsil,3 nodes. 1st tx 11-28-06, last tx 1-8-07. 3x Cisplatlin, 5fu pump, and Doxetaxel. Modified neck dissection,20 Nodes removed, all clear 02-21-07. HPV+,33 IMRT start 3-22-07 70GY,Completed 05-04-07 | | |
#21573 11-19-2006 02:32 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | emagster,
It's best to start your own post so that full attention can be given to you personally and not mixed up with someone elses post. You will have a lot of questions to be answered as you continue on your journey but there are many people here that will help you greatly.
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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#21574 11-19-2006 05:55 AM | Joined: Nov 2006 Posts: 6 Member | Member Joined: Nov 2006 Posts: 6 | Thanks Bill and David,
David how do I start my own post - I'm sure it's somewhere here on the site? I do have a lot of questions; such as the doctors say don't use soap on the area being treated == does everyone just use warm water?
Thanks again. | | |
#21575 11-19-2006 06:01 AM | Joined: Nov 2006 Posts: 166 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Nov 2006 Posts: 166 | emagster, go to the top of the page and click on the new topic box in the top center. I believe that is how I started. Good Luck and stay in touch.
Bill B. Dx 10-16-06 Stage 4 T2N2bM0 SCC Left Tonsil,3 nodes. 1st tx 11-28-06, last tx 1-8-07. 3x Cisplatlin, 5fu pump, and Doxetaxel. Modified neck dissection,20 Nodes removed, all clear 02-21-07. HPV+,33 IMRT start 3-22-07 70GY,Completed 05-04-07 | | |
#21576 11-19-2006 06:08 AM | Joined: Nov 2006 Posts: 6 Member | Member Joined: Nov 2006 Posts: 6 | Thanks Bill I will try it... | | |
#21577 11-19-2006 06:32 AM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2006 Posts: 493 | Bill,
You can ask anything you like...I for one didn't think you implied a stroll in the park. I just think it's funny (not Ha Ha) how the Tx differs from place to place. When I was 1st Dx I was advised to do both chemo and radiation. From everything I read I knew that once you get radiated you can't do it again. I'm a bit of a cautious man so I expressed to Drs that I wanted to hold something back just in case of recurr. That's when they gave me the kitchen sink speech, throw everything at it the 1st time.
Stay strong and keep on keeping on. Ask away.
Tim Stoj 60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#21578 11-19-2006 09:26 AM | Joined: Nov 2006 Posts: 39 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Nov 2006 Posts: 39 | Hi my name is Laura and Im new here as well. I am 38 years old and have 4 children. I have 3 boys ages 21,18,15 and a daughter who is 7 and has cystic fibrosis. I was recently diagnosed with small salivary gland cancer. I had surgery on Halloween to remove the tumor. They said the tumor was a little over 2cm and had clear margins all around. I had a few different biopsies prior to my surgery since I had seen an out of network oral surgeon to begin with. They had called it a T1 or T2 adenocarcinoma of the salivary gland. However, after surgery within my network provider they called it a T1- T2 mucoidepidermal carcinoma. With no lymph or metastisis. But they did find some perineural invasion within the tumor , so I was advised to see radiologist, etc for the tumor board.
The oral surgeon told me he would have to remove all of my molars because of the radiation treatments. I sat there crying because I took such good care of my teeth. Im also a non-smoker, and non_drinker. I looked next to me and seen a boy my son's age that lost his leg in the war and kicked myself in the butt for feeling bad over some teeth. I then seen the radiologist who felt in his opinion that I was probably already cured but would treat if the surgeon was nervous. I was also supposed to see an oncologist but that appointment ended up being cancelled while my daughter was in the hospital for her *tune_up* iv therapy.
After the tumor board met this past Thursday and we had just returned from the hospital with our daughter they called me to tell me they were recommending the radiation. Although the ENT surgeon said he was kinda on the fence with me as to treat or to watch me. He said if it were him that had the cancer he would treat.
This has all been overwhelming since Ive already got a chronic-progressive disease in my life with my daughter. But I need to be around to care for her so Im trying to make the best choices for my health. Ive read a little bit in your forums about the different types of radiation I guess Im a little confused as to how it works, what type I should recieve...as in radiate the entire mouth or just that area since I have clear margins and no lymph or metastisis. Is there anyone else on here with a similar diagnosis?
I hope all is going better for everyone in this club.
Take care, LauraT
Laura T T2NOMO Small Salivary Gland Cancer
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#21579 11-19-2006 12:28 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | LauraT, Welcome to the forum. Please start a new thread with all the above info in the Introduce Yourself section or answers to your specific questions will get lost amonst someone else's post. Go to the top os this section and click on 'New Topic' and try again.
You didn't say where you are being treated. Is it a CCC center? I tend to doubt it if they are recommending pulling perfectly healthy teeth because of radiation. They don't usualyy dothat anymore. I'd recommend going to get a second opinion or better yet treatment at a CCC center, but defintely get a second opinion on pulling those teeth.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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