| Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | All I have to say is here we go again. This stupid throat swelling is getting on my nerves and I want to quit. I want to finish treatment, but without the swelling. I can deal with the pain because they can do something about it, but the swelling I was told there is nothing they can do except another break. I do not want another break. I will be seeing my RO again today, but I am afraid he is going to tell me I need another break. I do not want that. I want to continue. I want this done and over with. I am also tired of losing everything I put in my stomach due to my gag relfex caused by this stupis swelling. I talked with my MO about it on Friday, but he could not look at it or get near me because he had a cold and was being very careful.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Angelia, I'm sorry that things are so rough right now. John went through the same thing. He couldn't talk for over a month because everytime he tried he would gag and throw up. He took both Zofran and Compazine for the continuous nausea. HANG IN THERE - the end is in site. You can do it! Talk to you MO about stronger anti-nausea meds and keep pushing fluids through your PEG. John always felt worse when he wasn't getting enough fluids.
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | 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 | Angelia,
Here is what one of my doctor's just replied to my e mail about your post:
5 day medrol dose pack (steroids) will often reduce the swelling and permit continuing without interruption. ativan usually works for gag reflex.
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Saw an RO today, not mine because he was in surgery. I did get the pain patch today and so far have not felt any results. It is only 25mg. He did tell me that my throat does not lookas bad as it did last time according to my RO's notes. Well, how would he know since he did not see it the last time. I will get to se my RO tomorrow. I will ask him about Medrol to help with swelling. It was really hard for me to lay on the table to today, but I managed to get treatment done. Just 14 more to go.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Angelia,
It takes 18 hours for the patch to start working. It releases the meds into your fat first and then the fat releases it into your system.
Kelly
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: May 2008 Posts: 357 | Angelia - I don't know what you're going through, but I do know you will make it. Hang in there girl! You have a lot of people pulling for you.
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | hang in there sweetie! andy got zofran today for his nausea...supposed to be pretty good (he just took one so it hasnt had time to kick in yet). ask ur RO about this too.
i know u want treatment to be over, but the breaks are just out of your control. get the meds, hopefully that will help u enough to keep going w/o the breaks.
i understand ur frustration. andy sounds the same as u. frustrated! this week was his "original" last week, but due to the breaks...he is only on #22.
here to hoping it ends as fast as it all began!!
Teresa ----------- CG to ANDY. Nasopharyngeal Carcinoma (NPC) T2N2cMxG4 stage 4. 43 @ dx 8/31/09 tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3 PORT 9/9/09, PEG 12/07/09 35 IMRT-1/wk carbo 11/30/09-2/3/10 tx stopped due to complications IMRT BOOST 3/08-3/12/10 PET 4/12/10 CLEAR! PEG out 4/14/10
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Angelia, you are my hero lady no matter what you do. I only hope you get thru this soon and don't gag anymore. I at times wish I could vomit instead of just having pain, but that has been athing of the past since Esophagus surgery to wrap 1/3 of my stomache around that blasted Esophagus. Good luck with your Dr tomorrow and I hope he has an answer for you..
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I hate vomiting. It makes the pain much worse. I was on my way to me hearing screening today and had to pull over because of the stupid mucous causing my to gag and that was all she wrote. I had nothing in mt stomach at that point and well now my throat is burning like you know what. None of the pain meds I am taking are cutting the pain. I can not wait until all this is over. At kleast I look good now. Got to find the positives, right. How am I your hero?
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | You just are and a very nice person to boot. I have liked you attitude since the 1st time yoy PMed me and helped straighten my head out. LOL It's still empty tho. You are just a special lady and very human..
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
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