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#15654 08-01-2004 05:53 PM
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jbentonwolfe, Hello I have one I got it when I was released from rehab. It is called a DeVilbiss suction unit made by sunrise medical. I got it thru the praxair healthcare services. They deliver all my medical supplies month to month..Maybe you can look in the san diego area for health services and go from there. I would be lost without mine..Since I cannot get the flem up and out of my mouth,,without my tongue...ALways Vicki Lynn

#15655 08-02-2004 08:37 AM
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thank you miss vicki i will start searching the web and local medical supplies today...


jbentonwolfe
#15656 08-02-2004 06:24 PM
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Jamie,

I used 1 packet with 16 oz of water. I put an old wash cloth in the Domeboro solution and after wringing it out, I just laid it gently on the area for 10 minutes. The next morning it was unbelievably better.

Check with your oncology nurse for a home healthcare agency they work with and start there. Give them your insurance info and see what they can do. Even the place that we started with that didn't take our insurance only charged us what our insurance paid. That was a big relief.

For the thick mucous, I used Tussin or Robitussin liquid. Anything with Guiafenesin will work. Beware of the liquid if your mother does not have a PEG tube. It will burn beyond belief. My (straight) hair is still curly. They tell me it is from the chemo or radiation but I really believe it was the Robitussin down the throat! There are also pill forms called Humibid but they are pretty large pills and I couldn't swallow them until recently. I rinsed with water and either used kleenex or spat them in the waste basket (when no one was looking, of course). I also used a humidifier when sleeping to help my dry mouth and thick mucous.

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
#15657 08-06-2004 05:58 PM
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WELL, TODAY WAS THE FINAL RADIATION TREATMENT. MONDAY SHE GOES FOR BLOOD WORK AND THEN RECHECK IN TWO WEEKS. THE MASS HAS GONE DOWN TO ALMOST NOTHING, SO HOPEFULLY THERE WILL BE NO SURJERY. RIGHT NOW SHE IS SO MISERABLE. HER MOUTH IS INFLAMED AND THE DOCTORS DONT KNOW WHY. NOW IT IS TIME TO START HEALING! YEAH.


jbentonwolfe
#15658 08-06-2004 06:16 PM
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All our prayers are with you, May God Bless you and make this the end of the cancer....Vicki Lynn

#15659 08-06-2004 08:43 PM
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Her mouth is inflammed because of the radiation treatments. Her doctors should be giving her advice and medications to soothe her pain from this.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#15660 08-09-2004 08:06 AM
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Jamie,

I am so excited to hear your mother has reached another milestone! Congratulations.

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
#15661 08-16-2004 09:41 AM
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Hi everyone, it has been pretty busy, with all of the follow up drs appts. everything looks good so far. the cell count is good, and the tumor is not there as far as they know, they will still do a cat scan to make sure. i guess it should be gone with all of the radiation blasting that took place. it was really wierd the effects on her skin didnt start until the last couple weeks and then it was raw, and oozie and bad...
next i want to get her into a hyperbaric oxygen chamber, my cousin said he did it and that is when he started feeling the best.
ok here is my newest question.... right now she has pretty much lost her voice, it is like laryngitis. now the chemo has been over three weeks and radiation two. she is asking how long it will take to get her voice back, her throat is still sore and she trys to talk but it is difficult. i told her to ask the dr. today but as we all know, he will not know as someone that has been through this!! anyone out there, experienced this? thanks jamie


jbentonwolfe
#15662 08-16-2004 11:08 AM
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Jamie, The rule of thumb has always been one month of recovery for each week of radiation. However, I have to tell you that my rad Dr. told me that was not accurate. He told me it would be at least two years before all of the side effects were healed and I could say that I was now as good as I would get. I can say it has been 6 months since my treatment ended and I still have a sore throat, my voice is still hoarse, and my mouth is still sore. So there you have it. I figure that as long as I am improving, and I have been improving since treatments ended, I'll take it and not care how long it will take until everything is as good as it will get.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#15663 08-16-2004 11:14 AM
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Not to worry about the voice. That was something nobody thought to warn me about. It lasted the better part of a month when all I could manage was a whisper. Lots of fun trying to talk on the phone! After a few weeks I would be whispering and suddenly a word would sound loud. Then more whispering. It gradually went away and I have had no problems since. I notice that I had lost the upper register of my voice, but just now, a couple of years out, I am regaining the high notes. Bottom line, this is just one more thing to wait out, but it WILL end!

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