| | 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 | OK Deb,
In your acceptance of Cookey's apology, now you have offended us "anti-Peg, suck it up or else" groupies.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 |
1) Liz (26) - I think you are absolutely right about the need to
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | David, Sorry...let me clarify..I don't include you in the "anti-Peg" group...just the "suck-it-up" group.  I am sure that you will not be offended by that...you are one tough cookie. Glad to see you mention your wife in another post and her contribution toward your care...we caregivers need that pat on the back every so often. Anne Marie, I don't expect new posters to do searches of this website. What I do see as just a given, is to read a little before posting. It just seems normal to me to look at what others are saying, checking to see what is related to my problem, seeing if there is a trend..IOW, researching before jumping in and asking something. Perhaps, that is asking too much of the general population. Yes, I was terrified as well and needed moral support but I needed information way more and was able to glean a lot of answers to my questions before I made my first post. I did say that it was my pet peeve...hopefully not everyone is irritated by those posts that ask obvious questions and can answer in a warm manner. I just typically don't answer. If I do, you will see me nicely tell the poster to read, read, read. The beauty of this board is that we all have a perspective that we can pass on to others and give them choices in how they approach their care. Thank you OCF! Deb
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: 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 | Plain and simple, I would not be here posting today if it were not for my wife. I know that and I have told her that 100 times.
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: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | Perhaps 'strong encouragement' is better than 'bullying'. My caregiver tracked daily calories and fluids and always had strong, perhaps even stern, encouragement. I will be forever grateful for that.
New posters--I don't mind if they post asking questions that have already been answered. I think it makes them feel less 'alone' to be able to put their questions out there and have one of us answer back qiuckly and warmly.
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | Joined: Sep 2007 Posts: 61 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2007 Posts: 61 | My, a lot for me to read today!
OK, I also feel that people post "repeat" questions just to see if there is any new info or suggestions since the last post. There are so many quick changes in the medical world, it is tough to keep up. Maybe someone has tried something new and it worked for them-so they share it in a the new post. Just a thought- things are always changing....
David- I love that you are "anti-peg" or "suck it up" or whatever! You provide me with that point of view, one that wants everyone to get back to their best possible point as quickly as possible. Your advice has ALWAYS been very helpful to me and much appreciated.
Anne-Marie- i think you see it like I do. Gather all the information you can from all sides, put it together and make a plan that works best for you.
Sometimes I am the bully, trying to get Mary moving a little, especially when the pain is in control. Sometimes I just listen when she has to vent about how "out of her control" her life had become over the last 8 months. And sometimes we just get the friends together and laugh-and try to put it all aside for an hour or two.
Thanks everyone!
Liz
CG to friend Mary. SCC Stage IV-A of rt. tonsil, mets. to lymph node on rt. DX 06/07,tonsillectomy 08/07, Chemo Cisplatin, Taxotere and 5FU X3 cycles; RAD completed 1/20/08 RND scheduled for 3/08. 54yr.old, NS, social drinker.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Mary is indeed fortunate to have you as her CG - the listening and just being there to enjoy a laugh is among some of the very best therapy there is!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Feb 2007 Posts: 10 Member | | Member
Joined: Feb 2007 Posts: 10 | My husband has been unable to swallow for three years. The stricture is so bad. Any suggestions? Doctors to help? He really wants to get off the PEG. | | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Gerry, Yes, I have suggestions and doctors to help. Feel free to send me a private message. Unfortunately, I think there are a lot of misunderstandings represented in this thread about why people develop strictures-that it is somehow their fault for having become "dependent" on the PEG--rather than the PEG saving your life when you develop a stricture (which I was told by a doc at Dana Farber that 8-9% of people receiving radaition for oral cancer do--that is not such a tiny percent that this board should be posting things that are prejudiced and nasty).
I have been reading and posting here for a year and a half longer than David, three years altogether, and there are NOT "many people who use the PEG just because it's there and then develop swallowing problems". as far as I can see. But it makes a good justification for making "dark humor jokes" about yanking someone's PEG out when they can't swallow (would we think it was acceptable to, even jokingly suggest a caretaker flush someone's pain meds down the toilet when they say they are in pain? why is everyoine reassuring David this "joke" is OK? There is a great deal of hostility towards people who really need a PEG post-treatment in a remark like that. It makes me feel like those of us who have genuine swallowing problems that we have fought against from day 1 are the acceptable butt of prejudice, hostile advice, and jokes on this board).
So anyway, feel free to send me a PM Gerry, since I don't really feel this is a freindly place to discuss this.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Gerry, I sent you a private message since I didn't know if you would know how to send me one.
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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