| | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Charm - respectfully disagree as novel/targeted therapies are used in the case of platinum resistent disease. Jett - This emphasizes the importance of the radiotherapy portion of the therapy: Link to Danish Study on Radiotherapy Alone My husband is a scientist, and made his decision base on the evidence at hand, and the risk vs. reward components. It was a decision our doctor friends supported. What we really need is a time machine to pop forward five to ten years to see how things pan out. And you have a day to decide. Yikes. I will check this website later - let me know if you have any questions. Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Maria You are always so tactful. Jett You probably already saw this but it's a nice summary of the clinical trial you are posting about NCI -RTOG 1016 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: Dec 2011 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2011 Posts: 126 | Hi Jett, I did not have the option of the Erbitux, but I wanted to mention that I had 6 weekly Cisplatin treatments, and hardly noticed any side effects aside from the radiation side effects. I can't speak for the long-term side effects, but I just wanted to mention that if you do decide to go the Cisplatin route, I would ask your doctor about the option of having the weekly treatments. From everything I have heard, the side effects tend to be less harsh. I felt nauseous one day after treatment, but that was about it. Good luck! Emily
Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
| | | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2011 Posts: 267 | I participated in the trial of radiation with cetuximab vs radiation alone. The trial isn't over so I can't speak to the results/effectiveness. The cetuximab was free for study participants. There was extra bloodwork and I have a study-related MRI every three months. My insurance company has paid for all of that so far.
Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
| | | | | 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 | So does this trial compare Cis with the 3 bag or 6 bag method?
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.
| | | | | Joined: Jul 2012 Posts: 4 Member | | OP Member
Joined: Jul 2012 Posts: 4 | Hi all - thanks so much for all the quick responses. I have decided to participate in the clinical trial NCI -RTOG 1016, comparing Radiation & Cetuximab with Radiation & Cisplatin (2 bags). info at http://www.cancer.gov/ncicancerbulletin/020712/page8I have spent a lot of time in last few days researching this, and am confident my medical team will be watching closely and making adjustments as necessary, even if removing me from study is required or changing protocol. A sincere thank you for all your contributions & experiences to this - greatly appreciated! | | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, Jett
best wishes for a smooth and successful treatment with a lack of drama.
You brought up an important point - that people do drop out of clinical trials if they do not seem to be going well and a protocol change is indidated.
Keep us updated on how you are doing!
Jean
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Apr 2012 Posts: 47 "OCF across the pond" Contributing Member (25+ posts) | | "OCF across the pond" Contributing Member (25+ posts)
Joined: Apr 2012 Posts: 47 | Jett
A good question and as a wise person said at the start there are no right answers. As usual I feel armed and fully informed for my next meeting with Doctors. For the record I had to bags of Cisplatin over 6 weeks did not feel too bad some tinitus a little nausea, very little weight loss. 5cm lymph node reduced by 50% all good.When I got the 3rd Cisplatin and radiation was introduced I felt worse than bad, it felt like I was beaten up by baseball bats. and unlike previous treatments the nausea refuses to leave me I last 5kg in one week.
I love my PEG it is keeping me alive.The introduction of a Nebulizer has made breathing talking and swallowing all manageable.
I will be having a real long discussion about an alternative to Cisplatin so they leave enough of me to fight through a recovery.
wise people what does QOl stand for.
Ps Any one got reciepies for the PEG that dont include UHT milk, as it repeats on me.
What a great site from Cubankeith part of team GB smashing it at the Olympics.
21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | Cuban Keith - QOL means quality of life. Commonly used by doctors when discussing the morbidity associated with treatments. "How much will it impact his QOL if we add chemo to the plan"?
Last edited by Brian Hill; 08-12-2012 06:46 AM.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | 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 | Keith,
You should have been told to tell your MO if you had hearing issues with the Cis. That ringing in you ears is the "sound" of damage. I had 3 Cis and I have permanent high frequency hearng loss now. My first Cis was really not an issue; the 2nd was bad but the 3rd knocked me for a loop. Of course that was after 35 rads so I'm sure that played a large role in my reaction. I too had uncontrollable nausea. Time heals all.....
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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