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Re: Radiation/chemo [Re: BCGeorge] #197391
10-13-2018 03:26 PM
10-13-2018 03:26 PM
Joined: Jun 2013
Posts: 253
alabama
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KristenS Offline
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KristenS  Offline
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Joined: Jun 2013
Posts: 253
alabama
I crushed a lot of mine and added water and put them through my tube, but they were okay to do that way. A few we hunted for a liquid form. (One we found smelled so nasty I was glad I never had to actually drink it ... that was definitely for the tube! Might have been okay disguised in a shake or something though.) Pharmacists are angels in these circumstances ... find ones you trust, if you don't already have them. They are worth their weight in gold.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Radiation/chemo [Re: KristenS] #197406
10-15-2018 04:02 PM
10-15-2018 04:02 PM
Joined: Sep 2018
Posts: 14
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BCGeorge Offline OP
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BCGeorge  Offline OP
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Posts: 14
Had a status check today with the RO and got a prescription for the lidocaine mouthwash, tastes awful but I was able to swallow some pills. I didn't swish, just swallowed. The node has shrunk enough already that my RO had a hard time finding it.


GeoH
Re: Radiation/chemo [Re: BCGeorge] #197495
10-27-2018 05:35 AM
10-27-2018 05:35 AM
Joined: Sep 2018
Posts: 14
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BCGeorge Offline OP
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BCGeorge  Offline OP
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Things are not going so great right now, I had my second big bag Chemo treatment last Mon/Tues and have been getting terrible nausea. The shot in the stomach, Varubi and two prescriptions are keeping the little bit of food I can eat down but I have lost almost 10 lbs since Monday, everything I have tried to eat doesn't want to stay put and it's making me miserable. I have been drinking enough water and that's about the only thing I feel I am doing right. I am trying a weight gain powder and hoping the nausea will back down some soon, with 17 days of Radiation left, (15 are Boost treatments) and one more Chemo I really don't want a feeding tube but I have a feeling the RO may say I need it if I can't put some of the weight back on.
Taking meds is a daily torture treatment, I either gag or the pills feel like they stick to my throat, which also makes me gag and feel nauseous.

Last edited by BCGeorge; 10-27-2018 05:36 AM.

GeoH
Re: Radiation/chemo [Re: BCGeorge] #197496
10-27-2018 08:14 AM
10-27-2018 08:14 AM
Joined: Oct 2012
Posts: 1,023
Toronto, Canada
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gmcraft Offline
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gmcraft  Offline
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Joined: Oct 2012
Posts: 1,023
Toronto, Canada
Sorry you are having difficulties, George. Has everything you tried crushing the pills and put them in applesauce? That worked for my husband.

Do you have anti-nausea medication? Take them (ask for it in liquid form). Keeping taking the doses even if you are a tiny bit queasy. Don’t wait till you are throwing up. It will be hard to control at that point.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: Radiation/chemo [Re: BCGeorge] #197497
10-27-2018 10:26 AM
10-27-2018 10:26 AM
Joined: Jun 2007
Posts: 10,171
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Joined: Jun 2007
Posts: 10,171
PA
Im so very sorry to hear you are starting to struggle!!! Im also very sorry to say this is right about when most patients will start understanding just how difficult oral cancer (OC) and its treatments can be. Its not a walk in the park but it can be made as easy as possible just by focusing on your daily intake.

One of the most important things right now is making certain you are taking in enough calories and fluids every single day. Every day you must take in at the very least 2500 calories and 48-64 oz of water. Losing 10 pounds in one week tells me your intake must be starting to lag as you are beginning to feel lousy. Doctors advise their patients that losing weight during rads is NOT good, even patients who are very much overweight should find another time to start their dieting for weight loss. I know when it hurts to swallow and everything is tasting horrible that makes it even harder but in order to help you to feel better somehow you must overcome the side effects and push thru it to take in enough every day. Maybe your doc could write you a prescription for pain meds, or magic mouthwash (MM) which has many different types. I had lidocaine, maalox and benedryl. Swish it around in your mouth for at least 30 seconds then spit it out to help numb your mouth an throat before trying to eat, usually it numbs for around 20-30 minutes. It helps some but with pain meds it may be a little easier to eat and drink.

Trick is to get the most calories per swallow as possible. Boost makes a Very High Calories liquid nutritional drink that has I think 540 calories per "can" (its now in a waxed cardboard box). VHC can be purchased in some retail locations but mostly it has to be ordered which some pharmacies will do for their customers by asking the pharmacist. You can also get it by clicking on the Amazon box near the top right of any page. By clicking on that box before ordering from Amazon, it helps OCF by giving us a small kickback from any purchase. It may only be small orders but they all do add up to be a big help every month for our tiny nonprofit organization.

Being you are half way into your treatments, you may get away with having a nasal tube instead of the regular PEG tube most patients have surgically placed before starting treatments. Plus the nasal tube is more of a temporary thing which does require any type of surgery to instal it. I know how having a feeding tube makes you feel, mentally its very difficult to process the need for it. Try thinking of it as being another tool to get you thru this just like the fluoride trays or the ointment to dab onto your reddened face and neck areas after rads.

Ask your doc or pharmacist if meds can be crushed or dissolved before trying it. You could also dissolve the crushed medicine in a tiny bit of warm water. Just check if its ok first. Time released meds (even over the counter meds) are not able to be crushed or dissolved or they could cause an accidental overdose. If you had any kind of feeding tube meds can be easily taken by dissolving them in a little warm water a few minutes before you want to take them. No swallowing anything when you can put it thru the tube. Just try to remember to take sips of water several times a day to keep your swallowing muscles actively working.

Hang in there!!!


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
Re: Radiation/chemo [Re: BCGeorge] #197501
10-27-2018 01:50 PM
10-27-2018 01:50 PM
Joined: Sep 2018
Posts: 14
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BCGeorge Offline OP
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BCGeorge  Offline OP
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Joined: Sep 2018
Posts: 14
Thanks Christine,
Pain hasn't been much of a factor at the moment, I was pretty inflamed a couple weeks ago from the radiation and I got some magic mouthwash which does help. Now that you mention the Nasal Tube I remember the RO saying he was going to give a Nasal Tube next status check, I thought it was just another examination. Unfortunately (for me) he was called away last week for a family emergency and I was seen by his PA. Now that I know what he meant I will probably be getting that on Monday and I will be asking him about either liquid meds, like Gloria said, or whether I can crush my meds, actually I don't think any of mine are extended release but I will check first.
Thanks for the support..

George


GeoH
Re: Radiation/chemo [Re: BCGeorge] #197508
10-30-2018 11:54 AM
10-30-2018 11:54 AM
Joined: Sep 2018
Posts: 14
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BCGeorge Offline OP
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BCGeorge  Offline OP
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Joined: Sep 2018
Posts: 14
Well.. I have been getting iv fluids the past 2 days and was scheduled for the rest of the week, but Monday the RO set up a consult for today about getting a PEG, went to the consult and PEG goes in tomorrow morning. Since I lost nearly 20 lbs since last Monday I can't really argue about it, either get the tube and beat this thing or starve. Now I need to get educated about PEG feeding... and the beat goes on.


GeoH
Re: Radiation/chemo [Re: BCGeorge] #197509
10-30-2018 04:12 PM
10-30-2018 04:12 PM
Joined: Aug 2018
Posts: 144
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ConnieT Offline
Senior Member (100+ posts)
ConnieT  Offline
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Joined: Aug 2018
Posts: 144
my husband is finally accepting the PEG after 3 months of fighting the fact that he needed it. The nurse and doctor yelled at him yesterday. His was put in before any treatments started. He has lost 20lbs/month. He won't do the gravity feedings though he has been told to. I wish you the best! Several on here have lots of experience using the PEG

Last edited by ConnieT; 10-30-2018 04:13 PM.

Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: Radiation/chemo [Re: BCGeorge] #197510
10-31-2018 02:50 AM
10-31-2018 02:50 AM
Joined: Jun 2007
Posts: 10,171
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,171
PA
Sounds like your docs are taking very good care of you with the hydration and getting the PEG tube so quickly. Thats really great having the feeding tube done so quickly!!! You definitely need it!. Im sure you can tell the difference in how you feel losing so much weight so quickly. Its unbelievable how fast it can just melt right off you when going thru rads. Its not just water weight coming off, its muscle as well which can make you feel week and have much less stamina.

Theres many here who have gotten a PEG tube after their treatments began. Its just another tool to get us thru rads as easy as possible. You may be expecting to have outpatient surgery to place the PEG tube. Its pretty common for patients to stay at least one, sometimes 2 nights in the hospital. I ended up staying in too. You may be in some pain after the surgery so if you are hurting dont hesitate to ask about being admitted. Often patients are not given enough follow up care or support after getting their feeding tube, ask about having a visiting nurse to stop a few times a week to help you with learning how to use your feeding tube. Being new to the feeding tube you really will need a hand. You should be all set up to get your feeding tube supplies (drain sponges, syringes, paper tape and thru a medical supply company. The nurse will come out the day you first go home from the hospital and help you learn how to set everything up to do a feeding. That nurse will only be there once at your first dayThe hospital or your doc will get you set up with formula and all the accessories to go with the feeding tube. Make sure you get a kangaroo joey pump!!! Its not always offered so you may have to ask about it. By having the pump, you will be able to do feedings while you sleep or watch tv. Just make sure you are propped up with at least 2 pillows or in a recliner.

Heres a few more random tidbits about have a feeding tube...

-After a feeding you should sit still for at least 30 minutes. Ive found if you can sit still for an hour, the extra half hour will help your stomach to settle.

-Theres many prescription formulas out there. If you are nauseous or having trouble adjusting to the liquid diet you may need a different formula. I found Zofran helped tremendously with the stomach issues.

-The most common feeding tube problems can be easily fixed. If you are using the feeding pump, try slowing down the rate of delivery first. Anti-nausea meds help too. After trying these suggestions, if your still having trouble tolerating the formula you may need to switch to another formula.

-After feedings, flush the tube with at least 2 oz of water. This is an easy way to up your daily water intake.

Any questions or concerns just ask. Theres lots of feeding tube users here that can help you.

Best wishes!!!


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
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