#39622 02-01-2006 07:16 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | No wonder he is balking at having a PEG put in NOW if radiation isn't going to start for 2 to 5 weeks.
Too bad I didn't tell the dentist at my CC center to go 'fly a kite'. I allowed them to remove my 16 healthy rear teeth, so now I wear an upper and lower partial. Despite religious use of the floride trays, I am finally experiencing dental decay to the point that my remaining teeth will be capped, but at least I have real teeth and not something I have to put in a glass every night. It seems that most others have not had the decay problem I do.
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
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#39623 02-01-2006 06:16 PM | Joined: Feb 2006 Posts: 8 Member | Member Joined: Feb 2006 Posts: 8 | I'm David's friend who didn't PEG. I had the same oncologist as David and at the time he wasn't so insistant regarding a feeding tube. I just didn't want one. I wanted to have as much involvement with my healing as possible. My wife reckons eating throughout radiation is why my parotids both still function reasonably well. Lost 7kg and stayed at my normal 10% body fat. I did serious drugs and lots of meditation to keep eating and my wife made sure I had at least half an hour of walking or cycling every day. And, I suppose, I didnt'know any better.
kem
ps gailmac: Kiwis are the softball world champs
scc rt tonsil, T1N2A, primary excised with radical neck disection, 35 radio trtmnts, 1x cisplatin.
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#39624 02-01-2006 07:33 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Kem, whether or not you eat during treatment has no bearing on parotid function. That is strictly determined by where the radiation is aimed and what the dosage is. That said, I am very glad you retained yours, as did I. We are very fortunate. | | |
#39625 02-01-2006 08:32 PM | Joined: Jan 2006 Posts: 32 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2006 Posts: 32 | Hi Kem!!!
can't believe you're here too. Oh well, should have known you're the best !!
Heaps of talk at our home with Ian and Melanie (Rob's new registrar). They rung a few times each. When you have a chance ring D. I think he could use a "bloke talk". Some how my capucino's conversation doesn't work!!!
heaps of love,ml
Wife of David, 44yo, SCC-BOT-R) mod. rad. ND in Jan 06. 35x standard RT from Feb-April 06. Recur on L) side same level in Sept 06 with mod rad ND. 1/48 node positive SCC + 1/48 positive micropapillary carcioma consistant with thyroid CA.
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#39626 02-02-2006 12:06 PM | Joined: Nov 2005 Posts: 105 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Nov 2005 Posts: 105 | I never had a PEG. But to be honest, there were times where I wished I'd have had one. I'm pretty stubborn. Okay, I'm really stubborn, sometimes a good thing I guess, and I just made up my mind that I was not going to have one. My RO threatened me with it a few times, but I managed through and didn't lose much weight. It was a matter of wills.
John
P.S. Forgive me but I just have to say GOOOOOOOO STEELERS!!!!!!!!!!
SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
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#39627 02-04-2006 12:17 PM | Joined: Feb 2006 Posts: 1 Member | Member Joined: Feb 2006 Posts: 1 | I had the PEG tube put in about 3 weeks into radiation. It was not a problem and really saved my by allowing me to keep up the nutrition. I had it in 12 weeks and the MD just jerked it out (ouch). I am 90 days out from radiation and can eat most moist foods. I have regained about 70% of salivary function and 90% of taste. I think the Ethiol during radiation may have helped. I have my first CT scan since radiation in a few days and am scared to death. I hope the radiation worked. Scott
Scott
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#39628 02-04-2006 02:37 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Hi, Scott-John can attest to the "OUCH". Hope your CT shows roses and daffodils. Amy 
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#39629 02-04-2006 04:06 PM | Joined: Jul 2005 Posts: 69 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jul 2005 Posts: 69 | Hi all,
I echo those sentinments although "OUCH" was not my choice of 4-letter words! Thank goodness the pain did not last much past the time it took to get back out to the reception desk. The doc and nurses still tease me about it from time to time. Pam
SCC Base of Tongue Stage IV- 2/04 - 40 Rads 1/2 conventional, 1/2 IMRT; 3 chemo treatments consisting of Carboplatin/Taxol/5-FU; Right Radical Neck Dissection 7/04; scans and pathology clear
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#39630 02-04-2006 04:36 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | I made them sedate me to pull it out the first time. I will avoid pain at all costs. I still felt the tube being pulled out but it didn't hurt so bad and only lasted a couple of seconds.
I now have my second tube in and it is working well. If it has to be removed for any reason I will again make them sedate me!!! I'm a big chicken when needles and pain are involved.
All my Best, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#39631 02-04-2006 07:30 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Yes, having the PEG removed hurt a LOT just momentarily, but the payoff was that I got to holler at the top of my lungs in a place where quiet generally is the rule. | | |
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