#43889 09-21-2004 11:34 AM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: Aug 2004 Posts: 217 | Again, all the 'mind-prep' I went through ahead of time was mostly for naught.....I had to ask Tom's brother to drive us today for the radiation and PEG placement. I was too queasy to be sure of myself, and I knew I'd worry about Tom's comfort on the long drive home. All seems to have gone well; I THINK I understand all the instructions! We've been given a huge supply of "Jevity 1.5," with instructions to work up to 7 cans a day. Tom's been listed as "Moderately Malnourished," I guess because his weight is down to about 135 This is most distressing to me - just too skinny and his rock-hard arms and legs are gone - - plus he's got nothing left to SIT ON!!! I guess this is where the real fight begins......God give us strength. I've been searching through old posts and finding so much great info on the PEG, nutrition, etc. YOu all are just the best. As always, you are in our prayers daily. With all the recent horrific events in the world, Tom and I still feel blessed and lucky, in relative terms, to be in the situation we find ourselves. Nicki
Nicki, wife of Thomas dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#43890 09-21-2004 01:11 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Nicki, If I could suggest one thing it would be to slowly let him adjust to the feedings. Jevity made me quite sick so I had to keep trying different brands until I found one that agreed. It was the Wal-Green brand and much cheaper. I also did very well with the Boost drinks. Boost also has a carbonated drink also that is good to keep the tube clean and clear. That or some good old Coke. We used it all the time when I was still nursing. I had to use immodium for a few weeks and some pepcid when I started on the feedings. He will adjust but it's better to do it slowly. Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#43891 09-21-2004 02:06 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Hi Nicki,
I had my PEG installed before my surgery. I lost about 25 lbs. in 10 days. When I got home after 7 days in the hospital I was inputting a minimum of 8 cans of Jevity per day. Two cans at a time with one packet of Carnation Instant milk.(Choc) This added about 400 calories per day plus the two thousand from the Jevity. Had no problems, never threw up once. I gained back 20 lbs in about 6 weeks. The problem was it was all in the belly. I am a small man to begin with so I didn't have alot to lose. I injected the food into the tube with a syringe. Also my insurance company paid for all the Jevity and syringes. If Tom needs to eat this way have the Doctor prescribe the food. You should not have to pay for this stuff.
Tom should start eating soft foods as soon as he can. I waited a little to long and I had to have my mouth opening widened. The old adage "Use it or Lose it" I went through PT for this and also used a therybyte device.
Hope all continues to go well with Tom's treatment,
Love Ya, 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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#43892 09-21-2004 02:27 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2004 Posts: 372 | Hey Nicki, Hang in there sweetie...I know what you are going thru. I cried and prayed everyday for strength and courage to help Dan get thru all of this. Insurance wouldn't pay for the Boost so our Bible study had a Boost party and they all brought us packs of Boost. It was great. However, Dan couldn't get down 8 cans of BoostPlus a day, so I talked to the Nutritionist and she prescribed Nutren 2.0 which had 500 calories a can, so Dan only had to get 4 minimum down a day. Also, since it was prescribed by the nutritionist to our local Neighborcare, it was covered by insurance. They delivered the Nutren and the syringes to our door. I just called and reordered when he was low. The PEG was a lifesaver for Dan, but if Tom is on major meds, get ahead of the constipation and ask for meds for that...we had a couple of really hard days before it got worked out. Hope this helps.
Also, Dan - how did the therabyte work for you? Dan is having some continued trimus problems. Actually, his jaw has tightened even a little more since we have been in Alabama. He can get PT on his shoulder but they really don't do jaws. He is trying tongue depressors, but is having some trouble. Let me know how the therabyte worked.
Nicki - praying for you guys! Deb
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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#43893 09-21-2004 08:02 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Dec 2003 Posts: 207 | Nicki -- you guys are warriors... I can relate to not having much to sit on... I remember the first time I kind of rocked back and forth a bit in my chair a few months back and *Crunch*. What was that? A boney backside, that's what. No more cushioning!! It's kind of embarassing...
Keep fightin'!!
Eric
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#43894 09-22-2004 05:01 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Hi Nicki God how I feel for you ... this is so hard but, you will get through it. Absolutely the insurance will pay for all his nutritional needs, and if he finds is unable to get enough calories etc. via the PEG they will pay for him to be fed thru his port. One day at a time girl, please take care of yourself. Marica ---------
Caregiver to husband Pete. SCC base of tongue stage IV. finished treatment 7/04 doing great.
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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#43895 09-22-2004 09:45 AM | 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 | Hi Nicki,
It seems like yesterday...I remember well everything as you describe it. A year later, my butt still hurts when I sit for very long. I already had the Asian no-butt and now it is worse.
Hang in there, it gets tough but it will improve soon. I remember when the Jevity or whatever I had started tasting so bad, I gave it away to the home health care agency (5 cases). A month later I was buying Boost and regretting the extra cost. I never could get up to much more than 5 cans a day without barfing it all out. As someone else said, if it won't stay in, look at feeding through the port (TPN). The portt was a live saver for me and especially on the fluids.
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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#43896 09-22-2004 03:44 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: Aug 2004 Posts: 217 | Heavy sigh........ Thanks for all the helpful advice. Certainly is easier to absorb it all here than sitting in a medical office with nerves blocking your grasp of all that is being said. I am very relieved that the nutrition needs are covered - I had already purchase some Boost and Ensure (he couldn't stand the taste) and was getting chills thinking of the expense THAT was going to be. He's just not feeling well at all today - and I think he's only gotten 3 cans down. He says it is all 'gurgling' and I can hear it...so I'm wondering if he might be taking in too much at a time. I suggested he slow down the delivery rate...? He also had a bout of diarrhea today, and I think that is from taking it in too fast,too.
OK, I'm exhausted, so I'll go to bed now. Is it inappropriate for me to mention that I think the worst thing about the PEG is that it makes cuddling difficult, and both of us need a lot of that right now? I'm not one to use ugly language, but this part really s--ks.
Love you all! Nicki
PS: WHAT IS A PORT (TPN)?????
Nicki, wife of Thomas dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#43897 09-22-2004 04:22 PM | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2004 Posts: 155 | Nicki Except for how much this disease can make you realize how many wonderful friends you have and how many compassionate people there are in our crazy mixed up world everything abut it.. s__ks! By the way...I'm glad you recognize your exhaustion...be good to yourself and get rest when you can it is really important as Tom gets increasingly exhausted and you need to be the one to get things done. I find joining Bob in his afternoon naps (on weekends:)wish it could be every day) does wonders in preserving my patience... especially when dealing with health professionals who are doing thier best (GOd bless them) but sometimes not meeting his needs...Love back to You Denise
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04 Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
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#43898 09-22-2004 05:44 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Hi Nicki, Some weight loss is almost inevitable except in some fairly rare cases. Muscle atrophy will happen as well. I carried a seat cushion around with me for months. I have put most of the weight and muscle back on again and left a lot of the fat behind. We did have to shop for new clothes. I went from a 34" waist to 30".
It's a small price to pay for living.
By the way - constipation is worse! Look on the bright side - if the treatment didn't beat you up it's probably not curing anything.
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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