#24548 10-17-2007 02:57 PM | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Jun 2007 Posts: 510 | Thank God for Buzz' PEG...he's down to 167 lbs. today, and that is WITH use of the PEG feedings...I realize it is a PERSONAL decision, but following our research on OCF, Buzz opted for it before beginning radiation, 'just in case'...
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement; T2 N2-B M0 Stage IV-A 28 IMRT + 6 Paclitaxel/Carboplatin Getting stronger every day!
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#24549 10-21-2007 04:12 PM | Joined: Feb 2007 Posts: 76 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Feb 2007 Posts: 76 | Cat
I just wanted to chime in and say that Marvin wasnt going to get a peg to start with. But we are glad he did. It was a big help during the months for rad and recovery. He just had his tube removed about 3 weeks ago.
Barb CG for Marvin.
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#24550 10-22-2007 03:49 AM | Joined: Oct 2007 Posts: 14 Member | OP Member Joined: Oct 2007 Posts: 14 | Barb, Keith is beginning to feel the affects of the rads. We aren't even half way thru yet. Oncologist didn't recommend a PEG unless he truly needed it. I see you are from Indiana, us too. We are finding lots of head & neck cancer here, especially those working at the steel mills. How is Marvin doing? What was his diagnosis? Thanks so much! Cat
CG of BT SCC Stage IV age 55 8/30/07 lymph gland removal and Base of Tongue biopsy. Radiation started 10/10/07 x 35 IMRT.
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#24551 10-22-2007 05:13 AM | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Cat:
Im nearly 1 month finshed with rad and chemo for hard palate and cheek oral cancer stage 1. For me, the PEG was strongly recommended, I didnt want to get it but I did. By the 1/2 way point of my treatments, I was unable to eat anymore due to the taste and sores in my mouth. Even with the PEG tube, I still lost 45 pounds. I am now trying to start to eat again with yogurt and cottage cheese. If the PEG is an option, take advantage of it. Best of luck. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | |
#24552 10-22-2007 02:32 PM | Joined: Nov 2006 Posts: 167 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Nov 2006 Posts: 167 Likes: 1 | Cat , I hope your recovery goes well. I think the peg tube decision hinges on just how bad the docs think the tx may be on you. I wasn't even offered one. I did go all thru tx having to swallow my food and water. It was tough especially about 2 weeks from the end of rads to about 3 weeks after tx was over. I lost over 40 pounds but now it is coming back also. Just keep telling yourself you can do this!! 
Bill B. Dx 10-16-06 Stage 4 T2N2bM0 SCC Left Tonsil,3 nodes. 1st tx 11-28-06, last tx 1-8-07. 3x Cisplatlin, 5fu pump, and Doxetaxel. Modified neck dissection,20 Nodes removed, all clear 02-21-07. HPV+,33 IMRT start 3-22-07 70GY,Completed 05-04-07 | | |
#24553 10-22-2007 03:30 PM | Joined: Oct 2007 Posts: 14 Member | OP Member Joined: Oct 2007 Posts: 14 | Bill, My husband is a skinny guy to begin with. I don't think he can lose more than 20 lbs. His tongue and mouth are beginning to get sores and his throat hurts when he swallows. Guess time will tell. They will put a PEG in if he needs one. Just hate to put him through it late in the game. Thanks for sharing. Cat
CG of BT SCC Stage IV age 55 8/30/07 lymph gland removal and Base of Tongue biopsy. Radiation started 10/10/07 x 35 IMRT.
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#24554 10-22-2007 06:35 PM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Having the peg tube fitted now or in the near future isnt really late in the game cat as he may need it for quite a few weeks after his treatment ends as well as during his radiotherapy.
its a god send to most.
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#24555 10-23-2007 03:37 AM | Joined: Oct 2007 Posts: 14 Member | OP Member Joined: Oct 2007 Posts: 14 | Liz, Thanks. He didn't know if he would feel up to the extra surgery for the PEG. But if that is what keeps him afloat, then he will need to do it. He can't talk well right now and I would assume that will continue through past the treatment? Appreciate all that is being shared with me. He is pacing the floor and passing time. I feel so bad for him. Cat
CG of BT SCC Stage IV age 55 8/30/07 lymph gland removal and Base of Tongue biopsy. Radiation started 10/10/07 x 35 IMRT.
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#24556 10-23-2007 08:32 AM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Robs voice was very gruff and eventually for a few days he couldnt speak at all,or even drink water.The peg was a life saver then,and it soon passed and he could drink fine after a couple of weeks,but his voice was never right.
It is a hard thing you are doing watching someone you love suffer and not being able to do that much to help,and if you are anything like i was you will feel sad and helpless on occasions.
Just be there for him when he needs you and learn to step back when he doesnt.
good luck and much love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#24557 10-23-2007 12:37 PM | Joined: Oct 2007 Posts: 14 Member | OP Member Joined: Oct 2007 Posts: 14 | Liz, He just found out today that the sores in his mouth were from the radiation bouncing off his fillings! We weren't told about that happening. He thought it was from dry mouth. I keep pushing him to tell the doctor when something is happening, but he seems to not want to make an issue out of it. This is a prime example of thinking what it is, but not really knowing. He has mouth rinse now that is helping, he's eating good still. Since he can't talk we are playing games; cards, dominos, etc. We'll see if he loses weight and will need a PEG. I keep telling him to be proactive in his care. He's too good of a patient (if you know what I mean). I am sorry about your sweetheart. It's got to be tough. I appreciate your encouragement. Cat
CG of BT SCC Stage IV age 55 8/30/07 lymph gland removal and Base of Tongue biopsy. Radiation started 10/10/07 x 35 IMRT.
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