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#15604 06-10-2004 04:42 PM
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I too had many problems from the PEG tube, mostly infections due to stiches the doctor put in to hold it in place. After the stitches were taken out I used tape to hold it in place. I agree the feeding tube should be the last thing you have to worry about. Keep bugging your doctors. I'm having no problems now after 8 months.

Lynn


Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
#15605 06-12-2004 07:36 AM
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Hi there, mom is set up for the start of treatments on monday. they are going to give her chemo through a "pic" tube inserted in her arm and send her home with it for five days. has anyone used this tube and how does it work, is it painful? or easy. I am keeping her up to date with all of your responses. thanks so much!


jbentonwolfe
#15606 06-12-2004 03:45 PM
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Hi,

My daughter Heather had a double PICC line. It is an IV line, but it is placed higher in the arm and can remain in place longer than a regular IV line. Heather's was right above her elbow, was securely taped in place and was not painful. We used the PICC for several medications over the course of several months and had very few problems. If used just for a periodic 5 day course of chemo, I wouldn't anticipate any problems.

Heather also had a lot of trouble with her PEG tube. I suspect it wasn't inserted properly, but have no hard evidence. Even though she had trouble with it, though, she depended on it for nutrition.

I recommend you be very aggressive with the doctors. Don't take for granted that they always know the best course of action. I did plenty of research and more than once I "educated" Heather's doctors on certain points. Her surgeon told me I should continue my research and continue asking questions because doctors only have so much time available and it is impossible for them to keep up with all the changes in medicine today. And after all, they are only human and err just like the rest of us. So keep on top of things and keep them on their toes!

Rainbows & hugs, wink
Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
#15607 06-14-2004 04:25 PM
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thank you rosie, you made me feel good today.
went and saw my mom at the hospital today and she is going great so far. they gave her the anti nausea meds and they seem to have worked so far. she did the iv drip of platinum and 5fu (?) and will go home tomm. she even asked for a hot fudge sundae today. i get different answers from all of the hospital personnel and doctors, some say there will be nausea after a few days and some say not. some say it depends. i cant see how, if your throat is raw from radiation and you cannot eat, how can you throw up? could you potentially choke? i am hoping that wont happen.
she said the pic tube which was placed in the arm was run all the way up the shoulder and into the chest? that seems pretty invasive.
i really do appreciate finding this site and all of your responses! at this point you are the only people i have to talk to that know what is going on.


jbentonwolfe
#15608 06-15-2004 06:19 AM
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You can definitely throw up! I sure did - to the point of polishing my teeth like glass! Antiemetics are not 100% effective and you must experiment with what works the best. Zofran, for instance, is mainly only effective for 3-5 days -then you must switch to something else. Because of the nausea I used compazine suppositories and they worked fairly well. The nausea usually gets better the further away from chemo but the secretions and radiation can add their own spin to it.

I also found that I reacted worse to chemo as time went on. All of us react differently -that's why the doctors and nurses can't give you a clear answer.

It is really disconcerting to caregivers to witness this but a certain amount of it is to be expected. Just make sure that nutrition lost is made up for. Guard against dehydration.

I don't remember "choking" but it was no picnic.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#15609 06-15-2004 05:17 PM
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Hi all, I have a new question for today.. my uncle who took my mom home from the hospital today and has her over at his house, said she can not be at her house because she has a cat, and they carry too much disease and with her immune system down it can cause problems. i have never heard anything like that. she has one cat, that is indoor only, has all of her shots and is groomed regularly. what do you think? is this true?? thanks again jw


jbentonwolfe
#15610 06-15-2004 05:19 PM
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by the way, thank you gary for your response. she was very nauseas today. then they gave her some anti nausea meds and it made her really tired. omg, will this subside after the five days? i hope so.


jbentonwolfe
#15611 06-15-2004 05:31 PM
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I have not heard specifically of any issues of having cats around even though they have been known to transfer some viruses and diseases to people. I have two dogs and I believe my two teenagers are a bit more unsanitary than the dogs laugh . If you mother is close to the cat, it may do her good to have her pet around her. I made it a point to keep the kitchen and bathrooms extra clean and changed the sheets often when the blood counts were low.

Most of the anti-nausea meds made me tired, too, and I sure tried enough of them. I went with suppositories, too, since I couldn't keep anything down.

Things will get rough for a period of time but they will improve. As Gary says, it is very hard on the caregiver especially. Hang in there.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#15612 06-16-2004 01:58 PM
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Posts: 546
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I have heard that pregnant women shouldn't be near a cat's litter box, but other than that, I don't know. Sorry not much help on that one.

I think a PICC line runs into the chest because it goes directly into one of the arteries. That is why it can stay in place for a long time. Regular IV lines put in the hand and wrist area need to be changed every few days. They can get infected more easily and the veins can collapse if left in too long.

Some people are given a Mediport or Hickman. They are similar to the PICC in that they go directly into an artery, but they are placed in the chest instead of the arm. It is more complicated to place them and usually requires a trip to the OR to be placed by a doctor, whereas a PICC can be placed by a member of an IV team.

Brian, if my memory is foggy and I have messed up any of the facts, please correct me. wink

Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
#15613 06-16-2004 07:08 PM
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I have 4 Bichon Frises who were with me 24/7 practically and I never had any issues with them. Cats are probably ok. Especially since it is an indoor cat. Little kids are probably more dangerous to the immune system. I don't believe that dogs and cats have very many humanly transmittable diseases.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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