| Joined: Oct 2010 Posts: 47 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2010 Posts: 47 | Please advice if any one knows what would be the best option.Today the doctor adviced they will give full blast radiation. Options with radiation are either 3 cisplatin or 3 Panitumumab study drug. What our concern is that chemo is tested but this new drug is also very promising. We have to make a decision by tomorrow morning as the Treatment is to start on Nov 1.
This is how it works; standard fractionation radiotherapy once daily, 5 days a week, for 7 weeks. Patients receive cisplatin IV over 1 hour on days 1, 22, and 43 of radiotherapy. accelerated fractionation radiotherapy once daily, 5 days a week, for 6 weeks. Patients receive panitumumab IV over 30-90 minutes 1 week prior to and on days 15 and 36 of radiotherapy.
Thanks !
Caregiver to husband 40 yrs. Was diagnosed SCC 09/2010. Soft palate, lft of tounge. Stage 4 HPV- Radiation 70 gy & chemo start Nov 1 End Dec 17/2010. 1MRI-7 Mar 2011. Neck dissection-14 apr 2011. Lymph nodes removed 36 just 1 had cancer. F/U CT Scan-19 may 2011. "Cancer Free" as per doctors!
| | | | 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 | Im familiar with cisplatin but not with Panitumumab. Ive never even heard of the other drug. That does not mean it isnt good or it wouldnt work. I was given cisplatin the way you mentioned above. My third round of it was cancelled due to being so ill. Dont know if it was from the chemo or just radiation getting the best of me. Without knowing anything about the other drug it would be impossible to give any type of opinion. Thats all anyone here could give anyway is their opinion. The difficult choice is completely up to you and your family to discuss and decide upon.
Im sorry I wasnt able to assist you. 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: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Hi Roma
This is so difficult for you to have to make this choice.
Alex and I also had the choice between drug A (not panitumubab but something else in that class) or cisplatin. It does frustrate me that the professionals who are supposed to know what they are doing aren't so good in helping you to weigh up the options. This is their idea of trying to allow the patient to give an informed consent or choice. How the !@*^# can we, the average, shell shocked, overstressed and fearful person possibly be expected to make an informed choice after a half hour discussion with the doctor (if we are lucky) about the pros and cons. Especially since we also didn't think to bring a dictionary to the meeting. Thank goodness for OCF!!!
the OCF members can't make the choice for you either as most of us are not medics nor are we fully aware of the issues of your particular situation that may make our own advice wrong. I will however, share Alex and my personal experience but please remember that Alex is Alex not your husband.
You will see from my signature that we eventually chose cisplatin but will need to wait and see if that was the right decision. Alex is young (51) and very brave when it came to toxicities. He also had cisplatin as part of his chemotherapy regimen prior to the chemo plus radiation (which is the bit you are about to undergo). So we knew that cisplatin had worked on his particular tumour. We basically chose a drug that had been more extensively tested but might have more side effects over something that is probably just as good (but yet to be proven beyond doubt) and might have less side effects. HOWEVER, there were caveats - Alex is young, Alex is brave and Alex had the attitude of "hit me with everything you've got" and the side effects be dammed!
You know what I would do in your situation? Go to the doctor, and say "if this were you (or father, or brother, or best friend - pick a possible person who may be close to your husband's age), what would you choose and why?" and see what comes out. Be persistant though, you may have to ask the question a few times, cos your doc may see this as your attempt to make them make the decision for you and try hard to avoid the question.
Good luck and let us know. And remember, at the end of the day, all the agonising you are doing now is over two choices that the doctors believe in already - otherwise they wouldn't offer them. Once your choice is made, don't look back - you will waste energy needed for other things if you do.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | 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 | Cisplatin is the gold standard chemo of choice for this cancer and has a proven track record and you have a very aggressive stage IV cancer with a high recurrence rate but even so this is a discussion that you should have with your chemo doc as no one here is qualified to advise you on a trial chemo.
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 | Roma I agree with all of the above. I did not even know about OCF when I was DX and we had to make a similar choice: cisplatin or the supposed wonder drug: Erbitux. I chose the wonder drug and it turned out the my particular tumor was resistant to Erbitux's method of attack on the growth factor. Plus it made my radiation dermatitis much worse than usual. When the tumor came back, my MO switched me to carboplatin for my second round of chemo. It is a hard choice and the worst part is that if it doesn't work, then you second guess yourself (or maybe that's just me) I don't have an answer, since I did not take either drug you have to choose between but I do have sympathy. Charm In the end, so much of our fate depends upon our MO and RO. 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: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Roma, You might find it helpful to read the discussion about these chemo option in Wikipedia: http://en.wikipedia.org/wiki/Panitumumabhttp://en.wikipedia.org/wiki/Cetuximabhttp://en.wikipedia.org/wiki/Cisplatinhttp://en.wikipedia.org/wiki/CarboplatinPanitumumab (Vectibix) is similar to Cetuximab ( Erbitux), monoclonal antibody anti-EGFR drugs. As Charm mentioned, these are not effective against tumors with certain mutations. Cisplatin and Carboplatin (Platinum based)are similar and seem to also sensitize the cancer cells to radiation. Cisplatin is generally considered a bit more effective, but with more side-effects (liver toxicity and hearing damage). Many patients have received a combination of both EGFR and Platinum chemo therapy. You might want to asked about a combo regiment.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: Oct 2010 Posts: 47 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2010 Posts: 47 | Thank you all ! Christine, Karen, David,Charm and Don for your support and opinion. Me and my husband finally decided to with Cisplatin. Treatment is due to start on Nov 1. But Doctor said he will confirm with us if the Chemo will be given the same day. Is it okay if chemo is given a day after or 2.
Caregiver to husband 40 yrs. Was diagnosed SCC 09/2010. Soft palate, lft of tounge. Stage 4 HPV- Radiation 70 gy & chemo start Nov 1 End Dec 17/2010. 1MRI-7 Mar 2011. Neck dissection-14 apr 2011. Lymph nodes removed 36 just 1 had cancer. F/U CT Scan-19 may 2011. "Cancer Free" as per doctors!
| | | | 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 | Typically the first chemo is given the first day of radiation and BEFORE the first rad Tx. Also typically his last chemo will be his last day of radiation.
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: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2010 Posts: 179 | I am amazed at how knowledgeable these guys are too!! Christine, David, jim, charm, Eric and Karen - your knowledge and support has helped me so much along the way.
Minh
35 Yrs old 03/10 SCC T1-T2 Partial Glossectemy end March - margins not clear enough. While waiting for resection - cancer returned,2 new cancerous lumps Re-section End May & flap from cheek attatched. Margins clear. Mid June - 4 teeth out Mid July -32 Rads and 3 Cisplatin 6th Sept 10 Finished Treatment!!
| | | | Joined: Oct 2010 Posts: 47 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2010 Posts: 47 | Yes Minh I totally agree with you. I feel so good to hear such positive opinions. OCF is an amazing place.
David, I just recieved the confirmation regarding chemo. Yes they are giving it on the same day. But he will be staying overnight for that.
Thanks again !
Roma
Caregiver to husband 40 yrs. Was diagnosed SCC 09/2010. Soft palate, lft of tounge. Stage 4 HPV- Radiation 70 gy & chemo start Nov 1 End Dec 17/2010. 1MRI-7 Mar 2011. Neck dissection-14 apr 2011. Lymph nodes removed 36 just 1 had cancer. F/U CT Scan-19 may 2011. "Cancer Free" as per doctors!
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