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Don,

I am so sorry this PEG thing seems to be such an uphill battle but I think, down the road, it will be something very positive for you. My Bill still says that it was a Godsend.

You might try this, since you are just keeping the tube flushed. Take the plunger out of that syringe (put it aside) and just pour the water into it and let gravity work. You can change the position of the tube higher or lower to control the flow. That might be less icky to you. Same thing for the supplement, when you start it...just pour it a few ounces at a time of water, then the can and let it slowly flow in. Then pour a few more ounces of water to clear the supplement. Its a great way to get more water when you are in the throes of treatment and need fluids. Cleaning the syringe will be easier without the plunger as well.

Good luck...many of us here are comfortable with this whole process...keep posting and we will help you.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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Deb,
Thanks for your concern and good advice. I had an appointment today with my Dietitian for PEG check and training. My PEG is just fine - I was just letting my imagination run wild!

I took my friend Betty with me as my backup. The Dietitian helped us dump a can of Nutren down the tube then flush it. I am to start taking two cans a day. Hopefully I can get over my PEG phobia and if not Betty will force me to just do it.

I remain concerned about Margaret. Hope they can fix her tube without any problems since I think she might really be needing it soon.

Also started my RT today. One down thirty-four to go. The mask felt like it was crushing my larynx (Adam's apple). So today was also my first day using the dental molds and fluoride. That went fine.



Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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Thanks for the concern, Don. No word yet on what comes next in my tube drama. I am still eating and drinking by mouth, but my throat and mouth get increasingly sore every day, so I'm sure something will have to happen soon.

I am glad to hear that your tube is working fine. It is kind of freaky isn't it? Having that thing hanging out there.

I'll let you know what happens next smile


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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Margaret:

Glad to hear that you are still able to eat and drink. Hope you are feeling a little better.

For me I have a love/hate relationship with my tube. Ive never quite adjusted to the idea of having to depend on it to get my nutrition. But, I also know it has saved my life when I was unable to eat or drink.


Christine




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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The Next Chapter!

Tomorrow, I'll have a new PEG tube 'installed.' New surgeon since the previous one is on vacation, or booked or something and couldn't do it until July 29, which is just too late. I am so not thrilled about more anesthesia since I do not tolerate it well when I'm healthy, and three weeks into radiation I can only assume it won't be any easier.

But, I bought a portable air conditioner for my bedroom today so at least I'll be cool during the rest of my treatment and recovery.


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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Margaret:

Good luck tomorrow. Before you know it, this whole ordeal will be behind you.

Christine


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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Posts: 551
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Well, the new tube was put it today. I loved my surgeon, she looked about 21 years old, although I know she is much older. She was so good about explaining how to prevent the tube from pulling out and showing me how to pin it to my clothes instead of tucking it in my waistband as I was doing. Because I am starting to get some serious mouth and throat sores, the team avoided intubating me and I was awake for the procedure with lots of narcotics. I was able to swallow the endoscope without too much discomfort and the next thing I knew, it was done! No incision as the doc had anticipated -- Yay!! So I'm home, and a little sore, but very happy with the outcome.

And very determined to be more careful with this tube.

Christine, I keep reminding myself, as often as necessary, that all of this will someday be a distant memory smile


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
Joined: Jun 2007
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Margaret:

Nice to hear your update that the surgery is over. Glad it wasnt too bad and you are able to be home.

Can you please explain how to pin 'the tube' to your clothes? I also am a tucker. I had used to tape it to my stomach, but now I just tuck it in and hope for the best.



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 2008
Posts: 507
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Posts: 507
Margaret,

I am so glad it seems to have gone well.

I still suffer PEG phobia but at least mine has finally quit hurting. I saw my dietitian today and have to increase from one can of nutrient to two. Just the one has been a mental challenge for me.

I think you are 11 session ahead of me so I am following your posts closely. You seem to be doing so well and dealing well with issues.

After just 6 sessions I already have moderate afternoon fatigue, slight headache and changes in my mouth and saliva, but still eating well.

Thanks for the posts smile


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

Joined: May 2008
Posts: 551
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Posts: 551
Christine -

The doc wrapped cloth tape around the end and left a big tab, though which she ran a big safety pin. I can pin to my bra, the doc's suggestion, or I'm thinking, my pajama top when I'm in bed. She thought it was best to have it pinned so that it went upwards, not down.

Don -

I definitely am starting to experience fatigue! Have your docs recommended light exercise to you? Many people find it helps with the fatigue. I am still only taking food by mouth, but think that will change pretty soon, maybe this week. I took Davidcpa's advice and ordered some of the Carnation VHC formula which is terrific. I can drink it easily and it packs lots of protein and calories. Also, my Mother makes a perfect poached egg in boiling water and those are super easy to eat. Plus water, of course. As much water as I can handle.


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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