#15273 04-27-2004 02:11 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 | Good for you, Darryl! In addition to calories, you need a lot of water, and the PEG makes that easy. Just make sure it is not COLD water, which is more uncomfortable than you can imagine. If you need some pain relief in a hurry, getting the meds via PEG really speeds things up. All in all, a good decision on your part. | | |
#15274 04-27-2004 02:32 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Darryl,
I had the PEG before I started the treatment and I did not use it to much for various reasons. However, at the worst of times it was comforting to know I had options and I switched all my meds to liquid and used the tube for that. Good luck on the procedure and keep a watchful eye in case you have issues with stomatitis from the radiation.
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#15275 04-28-2004 12:33 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Darrell...good luck with your Pegging! it`s a wise decision, we would have been in deep doo-doo without it. Cheers Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#15302 04-27-2004 03:49 AM | Joined: Feb 2004 Posts: 56 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2004 Posts: 56 | Hello Darrell,
Hope all goes well with your surgery. My father had the peg inserted last July. Thank goodness he did, the radiation made eating by mouth impossible. Almost 8 months later still on tube, but hope is always there. The peg will help in maintaining your weight. Do you know how many calories per day you will be taking? Also, check with your insurance company. Some will cover the cost of food if it is the sole source of nutrition. You'll do fine. Take care.
VickieM | | |
#15303 04-27-2004 04:09 AM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 261 | Not a big deal. I've had the peg in since before initial surgery. A couple of months now. I'm in 3rd week of rad now & have just started using it again. I used it after surgery too for a short time. Started at 225lbs. Now I'm at 190lbs. I too have been fighting using it. I guess were just hard headed! Keep yer chin up sonny boy!
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#15304 04-27-2004 06:49 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | Daryll: Think you are making the right choice. You need your energy to fight this and recover from the effects of your treatments. And it isn't after the horse is out of the barn if you need feeding help now. Just do it. I had mine before any treatment because my chemo dr. insisted. I thank him always and think it should be required of everyone before treatment. I lost 50 pounds, 25% of my body weight, even though I was on the peg. I was taking 4 cans of 350 calorie Ensure type stuff per day and supplement with Carnation Instant Breakfast now in 2 cans. This gives me about 1600 calories per day and I am barely holding my weight at 150 pounds. So good luck at getting the peg and use it well. The procedure is not a big deal compared to some stuff I've been through so don't worry about it. Rgds, Kirk Georgia
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#15305 04-27-2004 08:51 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2004 Posts: 372 | Good decision Darrell, Dan is 7 weeks post 8 weeks of chemo/rad and still completely relies on the PEG...nothing will go down yet. It has helped keep his weight intact. He has lost some, but not too much since the PEG. Dan takes meds thru the PEG for acid reflux and bowel problems along with pain meds and nutrition. He has had no problems with the PEG and insertion was no problem either. Will keep you in my prayers! Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#15306 04-27-2004 09:47 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I lost over 60 lbs. in a month didn't have a PEG and didn't get a PEG. Doctor didn't like it but so what, I survived anyway.
I was eating solid food relatively early in my recovery and I credit my decision not to PEG for this.
This is not to try to talk you out it - for many the PEG is a necessity. In a balanced world some of us got by fine without one and you should hear both sides. It took a lot discipline (and suffering) to survive without one, swallowing water and food in a raw, blistered and damaged throat is not for the faint of heart.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#15307 04-27-2004 12:02 PM | 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 | A caveat to Gary's post. Indeed there are some that can tough it out, and Gary certainly is a good advocate for the other side of the coin. But for all those reading this PEG thread, please look aback on all the previous ones as well. (Use the message board search engine under PEG.) This is not always the best choice. Personally, I see no need to chance poor nutrition and slower recovery for the small issue of getting a PEG, which when you are dealing with things much more severe (like radiation, major surgery and staying alive), is no big deal to get. And remember, Gary had IMRT radiation, which produces a lower exposure area of tissues that get nuked and develop mucocitis than those of us that are getting the full blast. Ability to return to normal food after treatment is dependent on many things. One for certain is that you do not allow trismus to affect your ability to open and close your mouth properly. This means that right from the get go you should be doing the stretching exercises with a TheraBite or stacks of tongue blades during treatment. I was on the PEG for just over a year, and when the tissues finally healed and the mucocitis went away, I had no trouble swallowing again. It wasn't like I had to relearn anything. Digtexas had severe fibrosis and narrowing of his esophagus from the radiation, no amount of toughing it through the pain of swallowing would have changed that issue which made it difficult for him to eat afterwards. Concentrate first on staying in balance nutritionally, and in total body mass. Gary is one tough guy for sure, but for my money I like to take the easy path when it is available.
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. | | |
#15308 04-27-2004 01:29 PM | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Mar 2003 Posts: 251 | Darrell, Wanted to let you know tha tmy husband got his PEG at about the same point in treatment. He stubbornly resisted getting one - took my sister arriving and being shocked at how he looked and pushing forward with the idea of the PEG. Once he got it, we both were wishing we would have considered it earlier. Helped him maintain his weight and took some pressure off of me. We were being consumed by the battle for enough calories. Good for you for taking the most reasonable course of action.
Anita
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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