| Joined: Sep 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2013 Posts: 40 | I met with my MO yesterday and because the ringing is a little more noticeable we will use Erbitux weekly for the next 4 or 5 weeks. He suggested that over the Carboplatin. Said that would be the better choice. ? I have 3 weeks of RAD left, the new chemo will go beyond that. I guess that's where we are for now.
Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
| | | | 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 | Very good! Im glad to see you wont get another dose of cisplatin. Good job at advocating for yourself! 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: Sep 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2013 Posts: 40 | Thank you all again, I had a PEG put in yesterday. I hadn't eaten or had much to drink in the past week. They inserted it just under my ribs because my stomach had shrunk or has moved up there. It seems that until I can fill my stomach and have it move back down into place I am experiencing sharp pains at times. Has anyone had or heard of anything similar to this? It seems to make sense to me. I guess the more solid food I can get down the better. Now that the thrush is clearing up.
Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
| | | | 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 | When having a PEG placed you will be sore for at least 2 days afterwards. It could be even several days depending on how easily the procedure went. Some patients its a 5 minute thing while others will be worked on for 20 or 30 minutes. Im sure the ones with longer procedure times will have more pains than the quicker ones.
Let me know if you need feeding tube pointers. Might be a good plan to ask for a pump to help you with getting nutrition overnight while you sleep. Just be certain to sleep on an incline on several pillows.
Best wishes! 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: Sep 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2013 Posts: 40 | Earlier I stated I would not be continuing with Cisplatin because of ringing in my ear issues. My MO suggested Erbitux, 400 units or however the measure it over 4 or 5 weeks. I have had 2 doses of Cis. 100 and 40 already. I know I should have asked my MO at the time, but am I getting more than I need or is this normal when you change meds?
Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Pain is normal not only from the peg site but the fact that your stomach has shrunk, feeding through the peg delivers a certain amount of "food" in a relatively short period of time. Sometimes this can cause cramping particularly if you haven't eaten a reasonable amount over the last week or two. Maybe slow the pump or drip down, the problem with that is you are hooked up for a long time - that was one of the things I didn't like about the peg...  hugs - hopefully you'll feel better soon. 
Last edited by Cheryld; 10-28-2013 07:57 AM.
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 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2013 Posts: 40 | 25 RADS down 10 to go. I think the biggest issue is the skin on my neck and collar bone area. With an unknown primary they have hit me all over. My RO told me today the last ten will be less broad and more concentrated on the node and other areas, not so much on the neck. I have had psoriasis for 30 years and use Betamethasone Dipropionate. This is similar to the Beta-val Christine mentioned. Funny, now that I have started all this treatment, after all these years my psoriasis has cleared up completely. I also have the Silver ointment. They asked me if I wanted to take a break to heal, but at this point I would rather get it done. There isn't any infection, broken skin here and there, but I can deal with it so far. The chemo will continue another 3 or 4 weeks. I guess a break really wouldn't prolong it much. Is there any benefit or loss with a break in RAD Tx?
Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | They say for every day of radiation missed is like 1.7 percent taken off the rate of survival, although they can make days up, I don't think it's the same with tumors regenerating, oxygenating, and the overall effectiveness of radiation declines after 25 sessions or 25 days anyway making it harder to kill cancer, and that's why it's 6-7 weeks only. Sometimes there is no choice, but if not, it's best to complete the treatment plan on time.
Good luck.
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: Sep 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2013 Posts: 40 | That's all I had to hear. I'll finish these last 2 weeks. Thanks Paul. I hope everything is working out for you. Take care.
Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
| | | | 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 | My RO really didn't want me to miss any sessions. He told me that from the beginning and fortunately the machine never went out during any of my sessions. I remember (slightly) my last session as I had been admitted to Moffitt the night before severely dehydrated and all "messed up". I thought they might give me a break but about 30 mins before my scheduled rad session my room door opened up by a gurney and they wheeled my butt down to torture me more. I was sooo weak and tired I kept my eyes closed most of the time.
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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