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Are you flushing the tube after every feeding. Regular coca cola actually works very well to clear the tube. Just a little after each can. That's what we did...don't know that that is the norm, but my best friend is an oncologist nurse and she said that's what they recommend. It never plugged, so I guess it worked!
Have you tried a nausea pill around 7:30? I'll be darned if I can remember the name of it, but it calmed Kevin's stomach within about 5 minutes. Started with a G, I think.
You are doing so great!!


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: Oct 2011
Posts: 32
Contributing Member (25+ posts)
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Have been flushing the tube after each use but only with water. Maybe we'll give the cola a shot. Jerry pretty much stopped the dex and zafron anti-nausea meds; trying to only use compazine but it's not stopping the evening episode. If you remember the "G" pill, please let us know! Thank you so much!!!
P.S. How much cola did you use? Guess I don't have to worry about diet or not! Thanks again!


Gayle, CG to incredible husband, age 53 yrs
DX 10/26/11, never smoked, casual drinker
Stage 4, T2 N3 SCC, right tonsil, node cluster in r. neck
Tx 2-3 cycles induction chemo followed by chemo-radiation 33 treatments w/concurrent cisplatin for six weeks of 7 week treatment
PEG in 02.03.12
Joined: Oct 2011
Posts: 805
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Ok...so much for the G name. It is the generic for compazine that he took for the short term basis. Did not start with a G! The long term (12 hour) was Granisetron Hydrochloride. That's the G I was thinking about!!
It is supposed to be regular coke, not diet. I didn't really understand why, we just went and got some and did it!!
Dr today?


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: Oct 2011
Posts: 32
Contributing Member (25+ posts)
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Thank you Kathy! Thankfully, Jerry made it last night without throwing up! After almost a week of being unable to get through a night, well, a big yahoo! I know it had nothing to do with it but I got him to chew some gum after his last feeding. It's like your body has all these queues within the digestive process. The chewing stimulates this, generates that, prompts this. I have to wonder with a feeding tube when the food is just suddenly "there" that the stomach must wonder "what the heck?" Anyway, such thoughts and actions keep our minds on 'other' things.

So anyway, without throwing up, that means he was able to keep a whole 1700 cal in. I know that is not enough and I also know you cannot make it up but what good does it do to push in the 2500 knowing he'll 'toss' the last 800. Hopefully, last night was a turning point and I can get him up the 2500 min today. Also, Mondays are his usual chemo days. Last Monday was 6th dose so chemo is done! That is encouraging to him, well, both of us! And perhaps might help reduce the nausea and vomiting as well. We're hoping. Now if he can just get some relief from other end. Utilizing good old Ducolax for that but the fact he is 100 percent on canned tube feedings I have to wonder how much solids are generated. I'll be asking doctor, but are there any thoughts for how many days go by without success before doing the ducolax?

Thank you again! Big Hugs to all!
P.S. I had no doubt the full-caloric cola is the best! Heck, the 4 or so ounces would only add a few calories which we so need right now!


Gayle, CG to incredible husband, age 53 yrs
DX 10/26/11, never smoked, casual drinker
Stage 4, T2 N3 SCC, right tonsil, node cluster in r. neck
Tx 2-3 cycles induction chemo followed by chemo-radiation 33 treatments w/concurrent cisplatin for six weeks of 7 week treatment
PEG in 02.03.12
Joined: Jun 2007
Posts: 10,507
Likes: 6
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If you dont already have one, get a feeding pump. This way while he sleeps the pump can run slowly getting all of the necessary nutrition he needs. If you use the pump make sure to prop him up in bed while the pump runs. Part of the reason your husband has trouble keeping down the formula could be the speed that it goes in. I can not do the gravity or push methods of feeding or I will puke. The only way I am able to get the formula in is thru the feeding pump. Usually nausea can be solved when using feeding formulas either by slowing down the feeding rate or by adding water. Of course nausea caused by chemo is in a class by itself where only strong anti-nausea meds will help that.

My nutritionist has told me to add fiber to my canned formula. Its easily found in any grocery store or drug store. I get the green jar of benefiber or citrucel. This is one thing where I do not follow their directions. It says to use up to 3 rounded tablespoons per day. In my own opinion, the directions are for normal people who do eat other fiber in their diets thru out the day. I add 4 or 5 tablespoons to my formula and shake the bag up real good. Then I let the pump run while I sleep.

Hope these tips help!


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
Joined: Oct 2011
Posts: 32
Contributing Member (25+ posts)
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Thank you! Am inquiring about the pump today!


Gayle, CG to incredible husband, age 53 yrs
DX 10/26/11, never smoked, casual drinker
Stage 4, T2 N3 SCC, right tonsil, node cluster in r. neck
Tx 2-3 cycles induction chemo followed by chemo-radiation 33 treatments w/concurrent cisplatin for six weeks of 7 week treatment
PEG in 02.03.12
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Good! If you need pointers let me know.


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
Joined: Jul 2011
Posts: 945
"Above & Beyond" Member (500+ posts)
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Hi, Gayle - just wanted to add my best wishes - it seems that you are soldiering through this together. I have a feeling that Christine's tips will help with the nutrition. Be sure to look for crocuses and other signs of spring - my husband completed therapy about this time last year, and it made spring very special for us when it finally arrived.

Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Joined: Oct 2011
Posts: 805
KP5 Offline
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Joined: Oct 2011
Posts: 805
Hi Gayle,
Have been thinking about you guys. How are things?
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: Oct 2011
Posts: 32
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Oct 2011
Posts: 32
Today is one week out of radiation. Jerry actually got blasted three times within 24 hours to make up for a missed treatment.. No cutting short the 33 here! Argh! But it's done! We've been home for a week now. Yahoo! Yahoo!

It's been rough. Not unexpected as this site and our docs prepared us for these couple weeks of radiation continuing to be active. We have doubled the fentanyl patch dosage and switched out from oxy to morphine. He is still in terrible pain but toughing it. Will not, however, swallow or take anything by mouth. He said he will gladly relearn how to swallow because its too painful to swallow now (should I be pushing him?). He cannot talk more than a whisper. I'm not too concerned about the throat sealing itself closed -- as was one of the warnings -- because he is always coughing up crud. In my ignorant mind I have to believe it is the inside of his throat sloughly off. (No where but here could I share that! - People just do not want to know!).

He has started getting severe heartburn again which causes him to throw up - ouch! big ouch! I imagine pouring vinegar on an open wound. I dissolved some antacid in his food this am.
His mouth sores are still very painful. I believe I have stayed on most things -- but the manuka (sp?) honey slipped thru my brain. Was that something that might help his mouth pain? And where do I get it? I looked it up but the recipe was too vague for my non-functioning brain.

We both put on positive fronts thinking that if you wear it hard enough it'll sink in. Our neighbor across the street has been going through treatments since last summer for liver cancer. My daughters classmate was diagnosed with hodgkins lymphoma in his neck and they tell him the treatments for this cancer will result in him getting leukemnia (what?). Guess what I am saying is that we count our blessings each day and hope tomorrow is a bit better -- at least no worse.

I do not know how individuals, families go through events like these without a support group. I again am so ever thankful I found this one! You have kept this caregiver from flipping out. Thank you!!! Thank you so very much! Hugs to all!




Gayle, CG to incredible husband, age 53 yrs
DX 10/26/11, never smoked, casual drinker
Stage 4, T2 N3 SCC, right tonsil, node cluster in r. neck
Tx 2-3 cycles induction chemo followed by chemo-radiation 33 treatments w/concurrent cisplatin for six weeks of 7 week treatment
PEG in 02.03.12
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