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Joined: Jun 2008
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I simply held the tube up, poured the medications and Jevity in and let gravity do its work. Didn't take long and I like that better than pushing with syringe. Hang in there.


Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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rubyann Offline OP
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Well got the peg tube working at the cancer center today. A nurse come in and I showed her and told her what was going on she said she would take care of it and this one came back and did something. At first she tried to fugue out which place the water went in, She knew a litlle about it, she was going to turn the dail to the side and put it in side, I asked why, she couldn't just put a s imple plug in it, she said, would you wheather have a plug and I said yes, so she put a plug, took off the rubber band and put some water thur it them had me to do it, how simple and easy to use. Why couldn't this been done to start with, why do they put you thur hell when you already feel so bad. She told me all about it and gave me papers on how and what to do and to call her or the Doctor if I had any problem. Funny i'm startting my 4th. week into chemo and radiation and just getting this done.
The magic wash, I told her I cleaned my mouth good after eating and put it in and sulsh it around for a few mins. and spit. She said it was better to swallow, because of sores in the the throat. I seen a new doctor today becauce the one was on vacation, He was very nice. He said I had two choices, go ahead and have treatment with the sores or wait a week and then treat a couple of weeks and wait a week....so on. I told him I didn't want to prolong the treatments that way. unless it would damage my body by going ahead. he said it wouldn't matter besides the pain and being able to eat. so I'm going ahead non stop (praying) He talked about a lot of different pain meds and ways to to do it. Thanks all, bet I'm the dumbest one on here, at least I feel like it now. have a great day.


cancer surgery on July 7th. 2008, I'm now a survivor. cancer free for now. 39 radiation, and 8 chemo treatments.
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Rubyann,

I'm glad to hear you were able to get some answers at the cancer center today. And there is no such thing as a dumb question - I always had a list each time I went to see one of my doctors. Feel free to ask questions here - I'm sure someone from this great group will be able to provide some answers based on their experience. And your questions will help others as well.

Good luck getting through the rest of the treatment. The next few weeks will be rough, but I felt the same way in wanted to get it done and then move on to the healing.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
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Ruby

Im so glad you finally got some help with your peg tube. Just remember to flush it now daily. You can also use it to take liquid meds. Just make sure you ask your doctor before you put meds in there. Some cant be crushed or are time release and that wouldnt work you would get very ill. Good that you are using the magic mouthwash, it will come in handy.


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: Sep 2008
Posts: 49
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Rubyann Hi,

My hubby just had his PEG tube inserted on the 3rd of Oct. We've felt a little uninformed as well. If you goggle PEG tube there are a lot of great sites that explain care and use. But most importantly I'd tell your Dr. that ordered it that you are NOT getting proper assistence with how to use and care for it. Also, don't give any of your personal info over the phone. You never know who it is that is calling. and there are too many con's going on out there that target people just like us. There are usually more then one home health organization that can assist you with this and if the one that is suppose to be taking care of you is not, then I'd ask your prescibing dr. who else you can use.
Also, about the magic rinse. Yup, we we're a bit confused about it too. The directions on the bottle say swish once every 4 hrs. Well pooh! that's not much help. his magic rinse is a combo of 3 things. Lidocaine, dipenhis and antac. His (MO) ordered it on Monday and we just talked to my Hubby's (RO) yesterday. He said to only swish and swallow evry 4 hours as needed but he could swish as much as he needed as long as he didn't swallow. ~shug~ I'm taking the bottle in today and getting a definite explanation on how and when to use this stuff. Just swishing once every 4 hrs is pretty useless in my book.
Speaking of new medications and questions about them. Our (MO) also ordered flucan on Monday. It's suppose to treat fungal infections. Well, I'm use to the kind that you rinse and spit. This one says take by mouth once a day. ???.. So I called the pharmacist to verify.( the rinse and spit kind should never be swallowed. So I was concerned) She said, "well that's what the Dr. ordered." My response was well ok. but should he really be swallowing it? is it ok? She finally then advised it was an oral suspension and yes he could swallow it. Geeze! Well anyway to top it all off Hubby had a hypersensitive reastion to it last night. His face and neck turned bright red and he had some seroius stomach pain going on. eek! Luckily his breathing was not affected or I would have been hauling him in to the ER lickity split. Needless to say I'm not giving THAT to him again. And I'm also taking it in to the Dr. today to see the directions on the bottle and see if that is what he really ordered. I find our pharmacists are a great resource and they have been really helpful to us thru all this. But communication is the key and it isn't unheard of for persciptions to get messed up by improper interpretation of information given on the script. Anyway what I'm getting at is don't hesitate to have your prescribing phys. elaborate on dosage and proper use of a med when he writes the script. That way you can be sure the directions on the bottle match up to what your dr. intended. I've learned my lesson and am going to question the Dr. on every aspect of a new med for now on.
Take care Rubyann, and insist to your home health care organization that you want them at your home now! and if they want your personal information for billing then they need to come get it in person. I'm concerned about thier professionalism. SO if your not comfortable with how they're handling this let your Dr. know right away and see about getting another organiztion instead.
Our organiztion NPHC was out the day after Hubby got his PEG. She had a whole two weeks of supplies for us plus 3 cases of formula. She showed us how to clean and care for the site and how to flush it. And will be out again in a week to check up on us and show us how to start feeding if we are needing to use it then for that. Your's should be doing the same for you as well.
Please let me know how your doing. Best wishes, ~Ija~


Ija wife-husband 47y healthy nonsmoker,nvr chewed.Dx SCC 01/05 primary left anterior toungue w/2 surgeries 02/05 no rad/chemo recurrence 12/07 no rad/chemo. 07/08/08 modified lt radical neck disection 3 nodes removed 2 pos SCC. TX 090808 taxol & carboplatinx7 radx37 w/ethyol.
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Ruby, thinking of you and hope you are doing ok.


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: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,507
Likes: 6

Ruby

Hope you are hanging in there. Keep in touch when you can.


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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