#34236 08-08-2005 04:42 AM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | OP  "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | Why am I surprised? hoho 
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#34237 08-08-2005 06:44 AM | Joined: Aug 2005 Posts: 4 Member | | Member
Joined: Aug 2005 Posts: 4 | Please don't laugh at this, but my radiation therapist told me to use "Bag Balm" (yes, as in a cow's udder bag) to aid in the soreness of radiation burns and ulcers. It took my wife going to four or five places, but at a local feed store, they had the balm and I have been using it since. It is wonderful, scentless, and lasts for hours and hours. My wife says her hands are much softer after helping apply my stuff to me. You might give it a try. Good luck and God Bless!! | | |
#34238 08-08-2005 02:36 PM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | | OP "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | You know I was thinking about that for a while. I did get the Cow cream at the drugstore but I am sure thats not as intense. I could go to the feed store in town I recon and get some. I have one more rad to go tomorrow. I am so glad its finally done. Now just the wait to see if it worked. I am hopefull so now if I can avoid getting hit with a truck I should be fine. GB, Barb~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#34239 08-08-2005 03:56 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | My family has used bag balm for generations now, we use it for every and anything! Comes in a green tin can with one size being perfect to keep in your purse. It's pure magic.
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.
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#34240 08-09-2005 07:59 AM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | | OP "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | I am going to get some this week Minniea. I am kind of a "helper" at the center. I try stuff and let them know how it works. Of course they tell me what ingredients not to get bur otherwise its up to me.
Have a great day!
Barb~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#34241 08-09-2005 04:58 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | You know you are an OCF member if you have Bag Balm rather than Vasoline Intensive Care Lotion on your bedside table. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#34242 08-11-2005 06:53 PM | Joined: Jan 2004 Posts: 134 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2004 Posts: 134 | Barb,
I am so sorry you are going through this! You have every right to vent... :-) If there is anything I can do for you, let me know. If I was in Ohio, I would come over and give you a hug...So I am sending you a hug over the internet. Hang in there. It will get better.
Love
Stephany
Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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#34243 08-14-2005 01:10 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Barb,
I haven't been around for a bit but I still wanted to tell you how sorry I am for the rough road you are on. It sure brings back a few vivid memories that I haven't thought of lately. I ran across a couple of pictures my uncle from Japan took when I surprised him on his visit to the states. He wanted to take a bus from Houston to Dallas after a cruise from California through the Panama Canal. I didn't want to alarm him so I didn't say anything until I picked him up at the bus station. My hair was thin, wrapped and my neck was one solid red oozing mess. He was shocked and until I saw the pictures he emailed me, I didn't fully understand. When I saw them a few days ago, I reminded how bad it really was.
I remember the last few treatments and just hoping it would soon be over. I could smell a chlorine-like smell somewhere in the back of my brain that got more foul towards the end of treatment. The last 3 were the roughest for me. We found some stuff called Domeboro that cleared up my neck in 2-3 days. I just soaked a washcloth in it and applied it (directions on the box) and it was like magic for me. You might give it a try. Nothing else they suggested did much of anything except burn like hell.
I sure got tired of the insurance hassles, too. My insurance was about $1,000 per month and I still paid for a bunch of stuff out-of-pocket. I don't think I will ever recover financially but I won't give up easily.
I just finished a 9 month computer certification class. When I enrolled, I honestly did not think I would live to complete it yet I knew I had to plan more than the 4 weeks between doctor visits.
It will get better but not immediately!
I am hoping for the best for you and the journey to soon be behind you.
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
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#34244 08-14-2005 04:34 PM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | | OP "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | Sorry Ed but I just saw this. Oh you had a horrible time. I am soooo sorry and so glad its over for you now. This is one nasty disease and the treatments aren't much better.  God bless, Barb~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#34253 07-29-2005 02:27 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | It could very easily get infected so be very careful. Maybe the burn unit nurse at the hospital can give you some help. If they do put you on antibiotics then you will very quickly have a thrush bloom as well. Have the Diflucan (or other anti-fungal) ready if that is the case. All of us have compromised immune systems for a time. I had small infections just erupt on my neck and not even where the radiation was aimed.
Wash your hands constantly, especially when touching or changing dressings on the wound site.
Gary Allsebrook
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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)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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