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#194942 - 08/05/17 01:53 AM Finished RADS, Now what?!  
Joined: Apr 2017
Posts: 46
WendyinGa Offline
Contributing Member (25+ posts)
WendyinGa  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 46
Valdosta,Ga.,USA
Just got done with RADS . It was tough, not going to sugar coat it. The last week of rads, i was put on the fentanyl patch, first 25mg, then a few days later 50 mg. My question is this...does the fentanyl cause eating problems? Ive lost 40lbs during Rads, and i thought that things might change after i stopped, i know...its only been a few days, but i have a feeling that my hunger for food is missing. My stomach doesnt growl, smells do not appeal to me, and mentally im not hungry either. My mouth sores are still in effect, so eating would be painful regardless. When i looked up side effects of fentanyl, anorexia, was listed among them. Has anyone came across this "feeling" of not wanting food while on fentanyl? Mentally, ive been trying to reason with myself to continue to eat, but i my body is in total rejection at the mere thought of food. I take Zolfram for nausea, and also metoclopramide ,5mg/5ml to make the digestion process faster, so i dont vomit, what i eat. Im tired from lack of nutrients, i know. Boost creamy vanilla is all i can throw down my throat, and that is an achievement. Water is fine, swallowing seems better, as i can now take full pills, instead of crushing them. Ive tried multiple soft creamy foods, i can eat maybe a quarter of a cup, before the painful burn in my mouth begins, as well as the "feeling" like i want to get rid of the food.

So...... Anyone else have this, or does this make me an original loony...😆


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor.---awaiting pathology
05/08/17 Cancer still present
05/10/17 2nd surgery- removing more
06/05/17 Simulation done, PET on 6th, RADS start on 06/20/17
07/11/17 15th treatment completed. Halfway point!
08/01/17 Last treatment! Woohoo!
I don't know if I would have made it without all of you!
Now, to the healing!!
#194944 - 08/05/17 02:14 AM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Jun 2007
Posts: 9,649
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,649
PA
Wendy, its very common to lose your appetite when going thru rads. All the issues you wrote about are normal and have happened to almost every single patient who has gone thru rads for OC. When food doesnt taste good or the smell of it bothers you that plays a part in having an appetite. I dont know if loss of appetite is from the patch or not. Id suggest reading the fine print pamphlet that comes in the box or asking the doc. Id also ask your doc about things that can help to stimulate your appetite. In my opinion, its all part of treatments and recovery and in time this will slowly change. The burning you experience is very uncomfortable, milk or yogurt can help with lessening the burning mouth. Avoid spices helps too. Hang in there, you are almost to the turning point where you will begin to feel a little better.

Best wishes with a speedy recovery!!!


Christine
SCC 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 smile
#194945 - 08/05/17 02:17 AM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Feb 2017
Posts: 58
sooner Offline
Supporting Member (50+ posts)
sooner  Offline
Supporting Member (50+ posts)

Joined: Feb 2017
Posts: 58
My husband had his Peg tube removed today a little over 15 weeks post-treatment. He never used fentanyl but I can tell you he has had many of the same symptoms you do. He is maintaining his weight only because we are monitoring his intake like a hawk. He never or rarely has any feeling of hunger. He also has the feeling he is full after taking in very small amounts of food. He has to make himself eat. His mouth is no longer sore. He can swallow. He had weeks where he had very significant aversions, much like you are describing, to eating and especially for certain foods/smells. That has resolved for the most part and it has become more physical. He can eat. He simply has to make himself on a schedule. He stopped the VHC Boost totally two weeks ago. He is finding the best result with real food that I mix in the Vitamix. I can only tell you that although the progress has been very slow, he has gotten slowly more able to eat both blended and unblended foods. We can eat out some now. Hang in there. No, you are not the only one to experience this. There are scientific names for these responses to food. I believe that he will continue to get better, slowly over time. However, I do think that we will have to remain very vigilant about his intake for a long time. It's not like before this cancer and the treatment but he told me he has never been happier, so with patience and a positive attitude you can see changes. I just keep presenting him with different opportunities to eat different foods. I refuse to get frustrated when it isn't tolerable. We just try something different. As a caretaker you can't be mad about the time invested in food they end up not eating. You have to just expose your self slowly to food. The dietician suggested we always eat outside if possible or in a well ventilated place. Although it is getting progressively better, be patient. The two topics discussed with the GI doc today were lack of appetite and early satiety, so look for progress in terms of weeks or months not days. You will get there.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
#194946 - 08/05/17 04:05 PM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Apr 2017
Posts: 46
WendyinGa Offline
Contributing Member (25+ posts)
WendyinGa  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 46
Valdosta,Ga.,USA
Thanks everyone. I just need to get past this mucositis and begin to eat something. These past few days, I thought, yay! No more rad's, I'll feel better, but, nope....still feeling like crap. The worst part is that I KNOW what is happening, and still cant change anything. Its a cycle. Im tired because i dont eat, i eat, get sick and vomit, now I'm tired again. Rinse and repeat.


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor.---awaiting pathology
05/08/17 Cancer still present
05/10/17 2nd surgery- removing more
06/05/17 Simulation done, PET on 6th, RADS start on 06/20/17
07/11/17 15th treatment completed. Halfway point!
08/01/17 Last treatment! Woohoo!
I don't know if I would have made it without all of you!
Now, to the healing!!
#194949 - 08/05/17 06:50 PM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Apr 2017
Posts: 34
cougardad62 Offline
Contributing Member (25+ posts)
cougardad62  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 34
Wendy hang in there I am 10 weeks out of treatment and eating again. I lost 45 pounds but now my stomach shrunk a lot. I stil have a PEG tube in and use it as well. Trying to gain my weight back before my PED scan. It's tough now but will get better. Patience is the key!

#194954 - 08/07/17 04:33 AM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Jul 2009
Posts: 1,369
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,369
Los Angeles
Wendy - congrats! You've been through the worst and now it's time to recover. As I remember it, what you're going through is perfectly normal. I too was on Fentanyl patches the last few weeks of rads, plus oxycodone. My mouth and throat were a sea of blisters. Even getting the liquid nutrition down was a nightmare. So rest assured you're no loony... at least no more than the rest of us knuckleheads!

Do you have liquid lidocaine to numb your mouth? I found it essential. And yeah - I lost 30 pounds during rads and had no desire for real food for months. I lived on ensure and boost. As Cougardad says, patience is the key. Think about how much better you'll feel in a week, in a month, in six months and on. It takes time but you will get there, guaranteed. As many here have experienced, the first month after rads is often just as bad if not a little worse than the actual treatment. So just set your mind to getting through the next little bit!

We're all pulling for you!!


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 8 years all clear in 6/17
#194959 - 08/08/17 08:42 PM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Apr 2017
Posts: 46
WendyinGa Offline
Contributing Member (25+ posts)
WendyinGa  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 46
Valdosta,Ga.,USA
Thanks guys, I'm holding steady. The mucositis is beginning to ease up...i think? The saliva is not as bad, and i can drink water and milk, fine. Anything else, however, still winds up making me sick. But! Im hopeful that im mending.


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor.---awaiting pathology
05/08/17 Cancer still present
05/10/17 2nd surgery- removing more
06/05/17 Simulation done, PET on 6th, RADS start on 06/20/17
07/11/17 15th treatment completed. Halfway point!
08/01/17 Last treatment! Woohoo!
I don't know if I would have made it without all of you!
Now, to the healing!!
#194980 - 08/12/17 10:17 PM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Apr 2017
Posts: 46
WendyinGa Offline
Contributing Member (25+ posts)
WendyinGa  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 46
Valdosta,Ga.,USA
Ok...need some advice. Its the weekend. Im still not eating, i try but it lasts for about 20-30 minutes before i get sick and vomit. Im barely drinking and eating. Im trying to hold out until monday to go to the cancer center instead of the emergency room, as it really sucks here. Here is where i need advice. How long can a person go without food? Or barely eating. I eat maybe teaspoon , trying to eat, but mostly i spit it out. Milk, has been what ive been drinking, and water. Maybe 2 cups a day. Anymore and i vomit. I was on boost, but it made me so sick. Milk was easier to get down. Im tired, and sleep a lot, very weak. Nauseous all the time, i take meds for it, but it doesnt seem to help. My mouth seems to have been healing fine, mucositis has almost disappeared. Swallowing is fine, i just dont understand what is up with keeping the food down. At this point , tube feeding doesnt seem necessary, as i can swallow fine. There is basically no pain that i feel. Im on the fentanyl patch 50mg. And i barely take the percocet, as i really dont need it.

Has anyone gone through this period of not eating? And when does it become necessary to seek medical help? Are there warning signs?


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor.---awaiting pathology
05/08/17 Cancer still present
05/10/17 2nd surgery- removing more
06/05/17 Simulation done, PET on 6th, RADS start on 06/20/17
07/11/17 15th treatment completed. Halfway point!
08/01/17 Last treatment! Woohoo!
I don't know if I would have made it without all of you!
Now, to the healing!!
#194981 - 08/13/17 01:52 AM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Jun 2007
Posts: 9,649
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,649
PA
Unfortunately what you described most of us have been thru during our recovery. But, most thats the patients who had chemo. Eating takes so much longer than what it did before cancer. Plus with the patients sense of taste not working it 100% yet, it makes eating a regular balanced meal even more difficult. After many weeks of not having a balanced diet, it might be catching up with you . By now you are probably malnourished and dehydrated. Im not a doctor or medical professional so thats just my guess at whats happening. Im not sure why you have such terrible nausea??? For patients who have had chemo I kinda expect to hear they are having problems with nausea. Since you didnt have chemo its unusual to see patients have nausea as bad as what you are going thru. Im wondering if you have always had a sensitive stomach or if this is only since rads? You should call your treatment facility on Monday and get an appointment to see a nutritionist. They should be able to help you with food options that shouldnt upset your stomach too much. If the nausea meds dont work ask the doc for something else. Maybe another medicine would work better or you could have something unrelated going on like an ulcer or gall bladder problems? Or, maybe its your stomach acid from not eating and drinking enough thats making you feel bad? You have suffered for weeks with this which Im sure is wearing you out. Plus everything you throw up needs to be put back in or this will turn into a viscous cycle of playing catch up that probably will never happen from what you explained. You may also want to consider checking this with your family doc . You may need further testing to get to the bottom of why you are having so many stomach problems. This needs to get figured out and corrected. Its especially troubling since your mouth sores arent as bad and you are even able to swallow pills.

People can go a long time without eating.... up to 3 weeks. As far as surviving without water goes, only 3 days is all someone can last. With not having a balanced diet and not taking in enough calories, you definitely will have other problems like weakness, loss of stamina, irritability, headaches, stomach aches, confusion, etc. But you may also develop far bigger issues like cachexia (muscle wasting), anemia, celiac disease, rickets, diabetes, kidney problems, etc. See the articles below about the seriousness of not eating a balanced diet. Plus your body needs at least 2500 calories with focusing on high protein to heal, if still losing weight on 2500 calories it needs to be upped to 3000 or 3500 calories every single day. Cancer patients in the recovery phase MUST focus on eating as balanced a diet as possible and taking in extra calories to help their body to heal. Without taking in enough, the body will pull what it needs from itself which negatively impacts your muscles, teeth, bones, etc. The recovery phase will be a long, difficult road when patients dont take in enough water and calories (of course as balanced a diet as possible). Inadequate nutrition over an extended period of time can cause serious problems that can last a very long time.

Hope this info helps you. Best wishes with your continued recovery.

Livestrong Diseases caused by poor nutrition

Livestrong, Disease caused by not eating healthy


Christine
SCC 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 smile
#194983 - 08/13/17 07:33 PM Re: Finished RADS, Now what?! [Re: WendyinGa]  
Joined: Apr 2017
Posts: 46
WendyinGa Offline
Contributing Member (25+ posts)
WendyinGa  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 46
Valdosta,Ga.,USA
Thank you Christine. We looked into any changes in what ive been doing. It might also have something to do with trying to stop taking the pain meds. I thought the fentanyl patch was working well, so i stopped my percocet. This could be causing withdrawal symptoms, such as the nausea and vomiting. Last night we decided to try taking the percocet and then push through with the boost drinks. If i vomit, i vomit, but at least im getting something. This might have been the culprit. I have yet to vomit, although a little nausea remsins, but im keeping it down. I didnt think i would be so dependent on the percocet. Its kind of got me worried about the fentanyl as well, since both are highly addictive. So, right now i am trying to go back to the percocets every 4 hours as was prescribed, and trying to take in as much nutrients as i can stand. I was pretty fearful of having to go to the ER. It looks like i might be able to avoid it. Although still, going to check in at the cancer center in the morning. Thanks again.


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor.---awaiting pathology
05/08/17 Cancer still present
05/10/17 2nd surgery- removing more
06/05/17 Simulation done, PET on 6th, RADS start on 06/20/17
07/11/17 15th treatment completed. Halfway point!
08/01/17 Last treatment! Woohoo!
I don't know if I would have made it without all of you!
Now, to the healing!!
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