#99286 07-11-2009 11:42 PM | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Hi everyone. I've searched everywhere for answers to these questions but can't seem to find them so thought you may all be able to help. Steve is complaining of head and neck ache on and off but he believes it's because he's tense. I'm not so sure. He is also getting massive amounts of mucous which is starting to make him have trouble swallowing. This is why he believes he is tense. I have no idea what to think. I know mucous is common with treatment but Steve's treatment doesn't begin until tomorrow so we can't blame the radiation for it. He's had the mucous for months now but up until today it's never been an issue. Normally he could swallow it but now it just seems to be getting know where. He said he swallows but not all of it goes. Any help please?
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: Jun 2009 Posts: 24 Member | Member Joined: Jun 2009 Posts: 24 | I've had that same issue since before I finished radiation on March 27 of this year. The thick mucus had just parked at the top of my throat. This has been the biggest obstacle to my eating recently because it blocks me from being able to swallow. In fact, today was my very first 24 hour period with no PEG food since finishing tx! (Yipee!) Like Steve, I'd swallow, but it wouldn't move. Couldn't swallow it, couldn't cough it up, couldn't swallow past it. Finally, today, I was able to go a full day without that feeling and I could eat real food. I know it's different for everybody, but for me, it seems to finally be going away. Good luck to Steve tomorrow! Truth is, it'll get worse before it gets better, but it WILL get better, and we will all be here to help both of you through as best we can.
Dana, Male, Age 52, DX 11/08 SCC right tonsil, Stage 3. RND, tonsilectomy, and PEG install done collectively 12/26/08, Cisplatin x3, IMRT x35. Post-TX PET clear 9/09, PEG removed 9/09, PEG stoma surgical repair 9/17/09. Dx renal cell carcinoma 11/09. Partial nephrectomy 01/10.
| | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | thanks Dana. Sounds like it's going to be a truly trying time. It's hard already and I expect it will get harder before getting easier as you've said. We will hang in there. I just expected the mucous to start after radiation had begun, not before. So my well planned things to expect list went out the window and I panicked. Just wondering also, does the pain from the tumour reduce as radiation progresses or does he have to deal with that pain as well as the side effects? Thanks again for your help.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | 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 | Obviously the mucus is not related to the rad that hasn't started so I would talk to his primary care doctor or the dentist that removed his teeth. Dairy products, like milk can cause excessive mucus but surely if this problem has just come on the scene, there must be a logical explanation. That said, I think he needs to get this resolved soon because the rad will cause him enough problems in this dept.
Re his H & N pain. Again talk to his doctors as it may have something to do with his teeth removal and also consider the stress that he's undergoing right now. IMO not enough focus is put on the mental aspect of this or any cancer.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Thanks David. We changed him from oxydone to ordine today and the mucous appears to have disappeared or at least lessened. He went on the oxydone when his teeth came out and the excess mucous really seemed to get full on from that day. So not sure if it is the oxydone or the teeth. We have an appt with dentist tomorrow and then again with our specialist on wednesday. I have a huge list of questions to take with me thanks to everything I'm learning from all of you. It's nice to not feel so alone anymore.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I bet there are quite a few doctors that wish their patients had never come to this site and got an education on this cancer.
Power to the people!! lol
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Power to the people indeed:
KNOWLEDGE IS POWER...that is why this board/website is so valuable.
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | lol...my ENT has told me to stay the "f" off the internet before...but at the time I was convinced I had seen leukoplakia on the other side of my mouth and was obsessed. My new PCP worries about that as well with me.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | 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 | There are some surprisingly bad bits of info about oral cancer on the web. Besides those sites that want you to take some herb or something else, THE NCI AND THE CDC actually have some outdated information on their site about OC, and the ADA, oh my God, they would have you believe that a biopsy brush (sold by someone that gave them 9 million dollars) will prevent you from ever getting oral cancer.
The web is wonderful and dangerous place at the same time depending on what site you are on.....
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. | | |
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