| | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | The viscous lidocaine is the only thing that worked for me, Diane. But I must admit that MuGard sounds promising. Sorry he's having such troubles!
My thoughts are with you both.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | 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 | Diane, watch that weight loss!!! This is very early for that kind of drop. My nurses told me the goal is to have zero weight loss but for most patients its impossible. By losing weight so quickly a person loses muscle which makes them feel run down. This very quickly turns into a viscous cycle where he will struggle and possibly end up hospitalized for malnutrition/dehydration. It happened to me so please change this now so he doesnt go thru that experience. Push the nutrition! Every single day a minimum of 3000 calories and 48 oz of water. Boost now makes the Very High Calorie (VHC) drink which can be found on thru Amazon. By going thru OCF for this you will be helping us to help you. It give OCF a 6% kick back, this goes for anything you purchase there. Here is a link to the thread for VHC that Brian set up to have our info already there so OCF gets the kick back. By drinking VHC he would only need to get 6 of them in per day to hit his calories. Bost VHC (with the OCF Amazon link built in) PS.... There is always the nasal tube or a regular feeding tube which could be added if necessary. No matter what he must swallow every single day even if it hurts. If he is in alot of pain, talk with the doc about pain meds like the fentanyl patch. Good luck!!!
Last edited by ChristineB; 10-02-2012 12:55 PM.
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  | | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Kevin dropped very quickly too. By the time 6 weeks of chemo were done (the 2 cycles) he was down about 23 pounds I think. Then he lost 33 more with radiation. Give Paul the pep talk. He is in control of his destiny here and he HAS to take whatever is needed to combat the pain so he can eat. Like I said before; the Lortab worked great as a pain med just before food. Kevin would take it, swish with the magic mouthwash and chug a couple of cans of Ensure.
Really think about the feeding tubes Diane. It sounds like he is going to need it.
Praying for strength and confidence for Paul.
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2012 Posts: 162 Likes: 1 | Vince found pain management critical to his ability to eat. He was able to make it through on long and short acting oxycontin. If his pain ever got above a 2/3 or he was regularly taking the short acting oxy, the med onc upped his long acting oxy. Anytime he really had a hard time eating, it was usually pain related. I would strongly advise Paul to not be shy about asking for pain relief. Use whatever it takes to get through this in one piece!
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | | Joined: Sep 2012 Posts: 51 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 51 | Turns out his mouth felt like it was just one big huge sore. He compared it to biting into a roasted marshmallow and having all the hot goo burn your entire mouth. Food has tasted awful for the last few days but he is still eating anyway. Today was the first day he's been able to taste the real taste of food. I'm hoping he can enjoy the taste this coming week. His second chemo treatment is a week from Monday.
Diane-wife to Paul, age 55
DX 9/17/12
HPV/SCC/BOT Stage 4a
Non-smoker/casual drinker
Otherwise healthy
9/24/12 Cisplatin, Taxotere,5-FU - 3x
12/3/12 Rad x 35/Carboplatin x 3
1/15/13 DVT upper thigh
Passed away 1/23/13
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | That's a pretty good description! This week should be pretty good. A rest time to get ready again! The battle continues.
Thinking of you guys!!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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