| Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Damn Eric. You sure listed a lot . LOL I still take those things and never had a problem. I feel for you man. I have another shipment from the VA coming tomorrow. I understand what you said very well charm. What the hell is an appetite anyway? LOL And what is eating? We just feed a piece of riund plastic and it keeps us happy if we remember to take them all.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Damn Eric. You sure listed a lot . LOL I still take those things and never had a problem. I feel for you man. I have another shipment from the VA coming tomorrow. I understand what you said very well charm. What the hell is an appetite anyway? LOL And what is eating? We just feed a piece of riund plastic and it keeps us happy if we remember to take them all. I take 2 oxys and a xanax at bedtime and get about 3 hrs good sleep before it's pee time. Opps
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: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | well said Jim, love you brother
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | well damn you all hit the nail on the head with Ron too. He hates to eat! He says it too much work to do it and also complains of this upset my stomach and that upset my stomach now his favored baked beans I made every weekend are not good anymore they made him sick. So now we wait til he finds something else...unfortunately it is his beer that he says he can handle...don't know how when it kills my stomach if I drink alot of them which is why I don't. I wish he would light one up just so he would start to devour food sometimes. He's whittling away to nothing. And right now for him to smoke doesn't matter anymore...that's all I am going to say right now.
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
| | | | Joined: Sep 2012 Posts: 16 "OCF across the pond" Member | "OCF across the pond" Member Joined: Sep 2012 Posts: 16 | Hiya I can relate so much to your problem, though I do have some taste (mainly bad it has to be said!)and I agree with Joan of Arc's and Zengalib's comments too..even in hopsital when I was throwing up all the time and stuffing a mucous suction tube in my mouth, I'd be watching cookery programmes...why?? I didn't understand. I still am addicted to anything to do with eating on the TV, even the trashy progs like Come Dine With Me which we have in the UK, not sure if you have it over there? I think it's connecting me with the memory that food can be a pleasure cos it sure isn't any fun now, what with pain, mono diets of the weeks acceptable food (which changes for no apparent reason) and the time it takes to eat is socially isolating - let alone the spitting which for me, may start if my throat gets very sore. I get like a film coating in my mouth and throat when I get intense pain and all in all, if that lot doesn't put you off I don't konow what would. I am interested in the differences in American and British care. I am particularly amazed to hear that some areas may have the legal capacity to prescribe medical marijuana - I never knew that. I've never smoked so would need that in a spray or something, cos not even a brownie cooked up with it would now work Today is a hard day for me, water is hurting today n that's officially a 'bad day'. I do however, unlike you, get hungry. I just can't do anything to satisfy it! It's pretty much torture sitting at home feeling hungry but only able to pop some fluid down the peg - it seems to do nothing to stop those hunger pangs!! Do let us know how you're getting on please, Hugs Lynne
BOT dx via Pe/CT combined scan Mar2012 Spread to node-removed. HPV 16 + Cisplatin x2, RT x30 June & July 2012. Peg in situ 06 2012 & 1 tooth out. Visual scope clear Oct 2012 Veggie, never smoked or drink much (polish halo!), no caregiver. Aged 58, Lynne in Scotland
| | | | Joined: Sep 2012 Posts: 13 Member | Member Joined: Sep 2012 Posts: 13 | I'm on the same page as charm. Honestly, besides helping w/ appetite (I'm in a similar situation, solid food very, very difficult to get down/not a lot of appetite) it was a life saver during chemotherapy induced nausea. I'd go from being on the verge of vomiting to having a growling, hungry stomach. That is however, my experience.
And Lynne, Oil extract is available/can be made. A little goes a long way. Smoking is bad for you, even if the substance isn't carcinogenic, it's still resin/tar in your airway/lungs. It's not legal where I live in the US and varies state to state, although it's federally illegal. It's a very very stupid contrversial subject here (one of many)
I'd talk to a few people. Obviously you're not going to put something in your body you're suspicious of. I've heard many extremes, but more often than not people advocate it when ingested the right way.
Also, this might sound really dumb, and obvious, but the more physically active I try to be lately, the more appetite I seem to develop.
Last edited by Garrett; 10-15-2012 01:31 PM.
Wrong DX since 05 Tx Since 11/10 3 KTP laser surgeries Correct DX Sarcoma Tongue 9/11 5 cycles doxerubicin + ifex 11/11 35x IMRT 03/12 Near Total Glssctmy/Right Nck Dsct + Trach + PEG 9/7/12 Recovering Nicely. | | | | Joined: Apr 2012 Posts: 60 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2012 Posts: 60 | My brother-in-law just moved in with us and he has MS. He has a card for medicinal purposes. He gets it in a oil form. I tried it. I never have liked it, but what the hey. You need just a little to be put on the back of the tooth. It did not make me hungry but definitely helped with sleep. I also noticed that the oil burnt my throat if I used to much. But I again cannot use it because I keep getting pnemonius and they don't know why when all I use is a peg. I have never lost my taste buds for most things, so it is hard to cook for my family and that is dwendling down to. Don't know what will happen if I stopped that. But everyone's right we have to eat.
10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.
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