| 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 asked several oncologists about the K-ras gene testing for HNSCC, like it's done for colon cancer, and was told it's not done, and doesn't apply. I only read about the 5 percent factor here before I started Erbitux, which was interesting, and was sort of happy when the oncologist wanted do small dose Taxotere in addition. I can't get most other chemos due my kidney disease, underlying medical conditions, and bad chemo reaction to Taxotere, Cisplatin, 5-FU in '09, so I settled to do Erbitux for recurrent metatastic cancer with prior cisplatin failure.
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: 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's Minoclycline 50mg that's given for the Erbititux Rash. Two Tylenol, and Benydryl infusion are given before the Erbitux. I used Cetaphol liquid moisturizer cleansor to shower, and Cetaphol moisturizing cream.
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
| | | | Lady1 Unregistered | Lady1 Unregistered | Whoever said it before on this forum- there sure seems to be a bunch of people on here who think they are medical experts. I don't find non medical people giving expert medical opinions on the latest "evidence" and cancer protocols very helpful. Yes you all have experience with the disease- but I don't see anyone with medical degrees or oncology fellowships advising on here so I think I will look for support elsewhere... I would recommend whoever is overseeing this forum to provide more oversight on people providing medical opinions. | | | | 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 | Lady1 I'm sorry you feel that way. No one here will tell you they know best. We're sharing information that was shared with us usually by a dr. Or through independant research. People here are basically sharing their experiences and what they have read in terms of information. Some of the members here have had good experiences with Erbitux. Others have had recurrences. As a former medical professional I can say even the drs. don't know. After 11 years in school, training to be a specialist, most drs can give you a well educated guess at best, and base their expected outcomes on experience, but no dr can tell a person for sure what can and will happen when choosing one drug over another. We are all individuals with different biologies, medical histories, environments, and challenges. This is why a perfectly healthy stage one cancer patient may go on to face several recurrences and ultimately pass, when a stage IV will get through it and live another 40 years despite having the same dr., and treatment. People here just want to educate, and share information so that when you are facing a decision you don't step blindly into it. For me Erbitux wasn't an option. Initially, they had considered me for the clinical trial, however my RO and MO decided against it because I'd had extracapular extension in the one node I had involved. To them sticking with the tried and true (in this case cisplatin) was my best shot at beating this. To me that says - they didn't want to risk my life on an unknown. Clinical trials are important to the advancement of medicine absolutely but in this case with all the mixed reviews I would err on the side of caution and ask for a combo of cisplatin, and Erbitux if Erbitux were offered. (let's hope I never find myself in that position again, to make that choice) 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: 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 | Lady,
Wow it's amazing how in such a short period of time on this site that you have dissected our sinister plan to uneducate the poor souls that come here seeking support, comfort and knowledge!
Nobody ever posts that they are experts or cancer docs, we merely try and use our experience to help those that have not been through what we already have. Some of us spend hours each day trying to help oral cancer patients so IMO your comments are WAY out of line.
Should you decide to stay then I would hope that you would refrain from posting further comments until you get to know us better. If you choose not to stay then I wish you and especially your husband luck on finding another site that is even 10% as good as this site in doing what we do.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | lady1 OCF forum is a package deal. You get all the emotional support from the caregiver community but you also get opinions. It's no problem if you chose not to listen to them. Most all of us rely upon our doctors' opinions, it's just that with 8.000 plus members, the difference between "expert" doctors on oral cancer protocols becomes crystal clear in a way that an individual does not get to see otherwise. Your apparent faith in a medical degree or oncology fellowship as a badge of correct information is rather quaint IMO. I will bet you have never been a juror in a medical malpractice case. You don't know how much I wish the doctors would all agree on how to treat oral cancer and what to do. Sadly they don't. We have spirited discussions here on those difference of medical opinions about the PEG, Erbitux, re-irridation, TSH tests and many many posters find these opinions very helpful in framing questions to their doctors. I'm sorry you don't Still, I hope your husband pulls through fine. Best wishes 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: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Lady one has been removed at her request form the OCF forum data base
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: Oct 2012 Posts: 118 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Oct 2012 Posts: 118 |
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: 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 | I really feel for her husband.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | I do hope her husband makes it OK. In all the time (6+ years) I've been around here, I've never seen anyone react the way this lady did. She must be really stressed over what's happening with her husband.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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