| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Although I never had a tube and survived everything I have been thru, I would advise getting the tube. I maybe am lucky or maybe just so hardheaded and set in my ways that nothing is going to beat me. I neither look my age nor act it. I owe that to my hard head. LOL I just refuse to get old and stay young. I been told that I am a one of a kind by Drs, Dentists, and many others. But if I were you, I sure would go for that tube. With it I might not have lost 70 lbs. Listen to these people. Most have worn the same shoes you have on now.
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: Jan 2009 Posts: 253 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 253 |
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter
| | | | | Joined: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | Nobody even asked me if I wanted a tube. There was no question. At 112 lbs, they just scheduled me for the surgery and did not give me an option. I guess they figured I was so tiny that I couldn't afford to lose even 10 lbs.
I had my tube put in two weeks after rads started.
I did not use the tube and was able to continue eating all the way through treatment, and without narcotic pain relief. My total weight loss was 5 lbs.
My case is an exception.
I hated my tube, and I hate the scar it left behind.
Even though I did not use my tube I would still advise you to get one, it is a Godsend if it is in fact needed.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Charm,
I'd like to know where you come up with this number of only 5 out of 6000 who didn't have a PEG. Which 5 are you counting? While the number is low, it is a lot higher than that. I for one didn't need a peg but I also didn't have surgery in the mouth or have chemo. I only lost 5 lbs so it is not necessary for everyone.
That said, 50 radiation treatments is a lot. Usually it is only 35-36. Swallowing was becoming a seveve problem around treatment 30 so if I had had to go for 50, I doubt I could have done it without at least a nasal tube. Why so many treatments? If you really need 50, I'd do whatever the RO suggests as far as feeding tube.
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: 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 | One would have to assume that with 50 (where did that number come from?) rads, each session would be less than with the normal 35 sessions since they usually deliver the maximum gray units either way. I had 70 and I believe they seldom deliver more than 72 Gy units during the Tx.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Eileen
I freely admit that 5 is a SWAG (military acroynym for Simple Wild Ass Guess that my Dad loved)based entirely on the statement espoused by some old timers in the PEG wars that "only a handful" have done without the PEG. I look at my hand and see only five fingers. Hence 5 Now bear in mind that figures lie, and liars figure. The legal disclaimer to the magical five is that you had both significant radiation and chemotherapy. In my case I had the "maximum" 7200 rads or 72 grays. Yet I am about to go 5 CyberKnife treatments for an hour each: as the release form stated: " I understand that my cancer has previously undergone the masixumum allowed dose of radation... and agree to these CyberKnife retreatments"
I was just so admanant about not getting a PEG even though the doctors were worried about 72 GYs affecting me, that I "cheated" on the weigh ins. Once I lost 40 pounds I was supposed to get a PEG, but I "toughed it out". Now that I have no alternative but the PEG, I see how easy it is and how much easier I could have made it on myself and still swallowed. I am even considering stepping up to the "Mickey" PEG of YouTube fame if I don't relearn swallowing soon.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Eileen, I had surgery 3 times, 2 for quick reoccurence the Dr said, I also had to have mt teeth removed so that I could have radiation and chemo that they were really treating agressivly then after the rads and chemo I had to be put into a coma like state for supposedly 3 days for rad seed implants in my tongue, I was put into isolation for this and thn the 3 days turned into 7 before I woke up again. THey figured I was gonna die. LOL geez, not my turn to leave this world yet. I never had a feeding tube and lost 70 lbs. If I had it to again, you can bet there would be a tube for food somewhee in this body. At Ohio State I did have some type of tube in the side of my neck that hey put some kind of nourishment into. But I refused the tube like a dipshit.Never again tho.
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: Apr 2009 Posts: 128 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2009 Posts: 128 | They have lowered the # of treatments to 39. I am going today for #5. Thanks for all of the responses. I am so glad I found this cite!
WFC
Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
| | | | | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | I had mine put in two weeks into treatment due to terrible mouth sores, etc. Could not have made it throught without it. "Only" lost 24 lbs. Great way to get nutrients, water, and MEDS down quickly and without discomfort or pain. Best to you.
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | | Joined: Apr 2009 Posts: 128 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2009 Posts: 128 | William 1949,
How much did you weigh at the beginning of treatment? I am 244, so my Rad Dr. said she will watch and wait to see if I need the tube or not depending if I can eat or swallow and depending on how much weight I lose. Believe me, If I start to have any problems eating, or lose too much weight, I WILL have the tube.
WFC
Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
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