| Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Ask your surgeon to recommend a PT that specializes in problems related to a neck dissection and lymph drainage from radiation. You will need a script. You do not sound like you at a CCC for treatment and even some of us that are, need to remind the docs we need this. Trust me, there is no package. You need to be your own advocate when things aren't working.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I never heard of him myself. I never really had much recommended to me but I was dealing with 4 Hospitals and maybe they just never thought. Like the massages and therapy, Not one time was I told abou them but would have been a damn hard head and said I didnt need them. LOL
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: 114 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2009 Posts: 114 | Got this off of the web. I think the lack of info I am getting may be my fault because I have not been my own "advocate" and just following along up until today.
Thanks Eileen
National Recognition
�UVa is ranked as one of the top cancer centers in the country by U.S. News & World Report �UVa is one of only two National Cancer Institute-designated Clinical Cancer Centers in Virginia �UVa has an active clinical trials program, with many clinical trials developed by UVa researchers and physicians. UVa also participates in national clinical trials and studies with other leading institutions across the country
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2009 Posts: 114 | EZJim you sound like a tough old bird. Makes me smile.
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | Joined: Aug 2007 Posts: 83 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2007 Posts: 83 | John:
Sounds like you are going to CCC and I am sure you will get excellant care. I went to Duke (a great hospital) and I had wonderful care and most importanty excellant results but I did have to ask questions and follow up on "small" things. I think they get so focused on "getting" the cancer, they forget about the day to day questions, issues and individual after effects from treatment. They always welcomed my questions and handled any concerns. Sent me to PT when I had neck issues, pain mgt, how to relax during rads, etc but I had to ask ! I oftened wondered why they did not have a handout with a FAQ ? So my advise is to always ask and stay on top of your own care.
Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | John
Never heard of Mr Anderson until your post so I checked him out. I am always leary of guys with Pyramids on their web site asking for money. He looks like the classic pitchman - very slick (bordering on slimy) Nothing special at first glance outside of the usual tyranny of positive thinking crap that says if you don't survive cancer it's because you had negative thoughts. His book seems aimed at making people WITHOUT cancer feel good about themselves for buying it to give to those of us who do have cancer even though we are sick and tired of its contents of stale platitudes. Oh the usual nutrition pitch. Thank god nobody bought his book for me. What really interested me was that they posted their IRS form on the web site showing that their donations dropped from 21 Million dollars a year to 10 Million dollars a year yet they raised the salaries they paid to almost 500 Thousand dollars. Wow , what OCF could do with money like that. At least he's honest and transparent but too simplistic for my taste and my cancer experiences.
Last edited by Charm2017; 07-24-2009 01:06 AM. Reason: toned it down
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: May 2009 Posts: 114 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2009 Posts: 114 | Thanks Deejer47. I got a week to start Radiation. I can swallow better and one side of my tongue can taste food. I still have limitations but I think I will over come or work to for these eaely weeks.
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2009 Posts: 114 | Yes. Like I said, I think it has been about me not asking the right questions. Since you guys are around now I am learning to take charge and am researching my situation.
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2009 Posts: 114 | Thanks. It's hard to know who is who out there. Good or bad
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | What do you mean tough old bird hisnibs LOL I am only 22 years older than you > Got me laughing myself on that one.
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
| | |
Forums23 Topics18,170 Posts196,933 Members13,106 | Most Online458 Jan 16th, 2020 | | | |