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MYSTYMANE's Photo MYSTYMANE Posts: 64
4/23/09 9:44 A

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Well still taking meds for the UTI, so hope soon it will be ALL cleared ...Thanks for writing :-)

Cindy


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4/22/09 8:02 P

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emoticon A UTI is painful even without radiation, no wonder you were in so much pain! I'm glad you are feeling better now, but sorry you had to be in pain for so long before they figured out what it was.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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MYSTYMANE's Photo MYSTYMANE Posts: 64
4/22/09 10:32 A

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Well I ended up with a Urinary tract infection from Radiation, OMG what a horrible feeling. Taking meds and antbiotics for it now, feeling a lot better, also found out I was low in my Potassium, taking meds for that for 6 days.

To top it all off I hadn't drank enuff water and became dehydrated had to be on an IV yesterday, soooooooo with all that said, Itold the nurse at the cancer center I can't take anyore radiaiton, it is just starting to heal down there, chemo yes I will do more if need be of course, butshe said to talk to dr which I will, still I know I will be in same predicament I am in now, but at least now I am starting to heal when I urinate. God what else....
Oh my appetitie is doing good finally.

Cindy


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HOPE2BE's Photo HOPE2BE SparkPoints: (146,839)
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4/19/09 10:18 P

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Mysty I got this off another team. Information you can use. A lot is free but saves you money right away.

Contact Information: Express Scripts Specialty Distribution Services P.O. Box 66536 St. Louis, MO 63166-6536 1-(800) 769-3880 (phone)

Physician requests should be directed to: 1-(800) 769-3880 (phone)

Rx Outreach is a patient assistance program that offers patients access to more than 125 safe and affordable medications. Medications in this program cost $20, $30, or $40 for each 90-day supply, depending on the medication. Click here to visit the program's web site.

PS Card (Prescription Savings Card)

Contact Information PS Card (Prescription Savings Card) 1-(888) 516-2535 (phone)
PS Card Web site

The PS Card allows card users to access discounted pricing for all prescription drugs at their local pharmacy. Discounts are up to 50% off the cash price for virtually all generic and brand-name prescription drugs at over 53,000 participating pharmacies nationwide. The PS Card is free and requires no membership. All individuals are eligible, regardless of employment, income, age, gender, or citizenship. A temporary PS Card may be printed from the website (www.pscard.com). A permanent, personalized card may be requested on the website (www.pscard.com) or by phone (888-516-2535) at no cost to the user.

The mission of PS Card is to allow individuals with no prescription drug insurance to enjoy pricing discounts usually available only to members of benefit networks. The PS Card program is not insurance. Personal information is not required from the user to obtain the discounted pricing for their prescription. All prescription pricing is processed by a third-party pharmacy benefit services provider, so all prescription information is kept fully confidential. Please see the program web site at www.pscard.com to price prescriptions at local pharmacies and see other ways to save money on prescriptions.

The Benefits Check Up Rx

This service will provide you with a confidential, personalized report of public and private programs that can help you save money on some or all of your prescription drugs. Just give them some basic information and they will check your potential eligibility for over 260 programs, including more than 1,450 prescription drugs. It is from the office of aging, but do not let that deter you, the programs are for anybody who needs help. Go HERE to fill in the form to find help with your prescription prices.


AARP's Discount Mail Order Program. Call 800-289-8849 or go to this link.


Accessing Free Medication - The Patient's Advocate

Destination RX. Compare prices among several plans

Disability Resources. A nonprofit org. that provides information about resources for independent living. Resources listed by by state.

Partnership for Prescription Assistance. For a free directory, call 800-762-4636 or go to their website.

Needy Meds.

Patient Assistance Directory Pharmaceutical Research & Manufacturers of America
Call for booklet: 1-888-477-2669 . At least 42 companies will provide free medicine to uninsured patients in need. Your Doctor must attest it would be a hardship for you to buy them.

Veteran and Military Benefits. If you are a veteran, call 877-222-8387 or go to this link to see what you qualify for. If you are a military retiree or dependent, including current, widowed or divorced spouse, call 800-538-9552 or go to this link.
*New information. After publishing a newsletter featuring organizations available to help you with the rising cost of medication and health care, we received a large amount of feedback. One of the items discussed was the V.A. Center in Spokane, WA. It seems they do not believe in, or treat FM. If you are currently following a routine prescribed by a private doctor this facility may force you to abandon your routine for a cheaper therapy. They do not believe in pain meds and will only prescribe medications approved by their insurance plan.


Write for a booklet that explains the procedure involved in applying for free medications. PHRMA Pharmaceutical Research and Manufacturers of America 1100 Fifteenth Street, N.W. Washington, D.C. 20005




THIS IS ALL I COULD FIND SO I HOPE THIS CAN HELP SOMEONE. GOOD LUCK


Hope
co-leader of Challenged by Arthritis

co leader of Surviving Cancer. My motto is:
If God is for you who can be against you. Romans 8:31
If at 1st you don't succeed try try again

Henry H. Palmer teacher 1840
Tomorrow is a new day


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MYSTYMANE's Photo MYSTYMANE Posts: 64
4/19/09 5:20 P

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I thought of that and seems may be only way to heal me :-( I am paying for all this myself and it is horrendous I have no Ins.

Cindy


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PINKPADDLERJUDY's Photo PINKPADDLERJUDY Posts: 381
4/19/09 12:21 P

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Dear Mystymane
I know this doesn't sound too appealing, but you might want to see if you can get a catheter for a while.
My heart goes out to you & I pray for some relief from the pain.


Judy

“If the world seems cold to you, kindle fires to warm it.” -Lucy Larcom


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MYSTYMANE's Photo MYSTYMANE Posts: 64
4/19/09 10:33 A

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I HAVE DESINEX OINTMENT WOULD THAT WORK, THE AREA THAT i NEED IT ON THE INSIDE WALLS OF THE VAGINA ARE DAMP, WORRIED NOTHING WILL STICK TO IT.
Also when I have problems like this which I did wbefore surgery, I can't eat, well nothing is enjoyable knowing your going to be in pain when you use the bathroom.

Edited by: MYSTYMANE at: 4/19/2009 (10:49)
Cindy


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MYSTYMANE's Photo MYSTYMANE Posts: 64
4/18/09 1:08 P

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Well it is very painful when the urine hits the vaginal wall, that is more than I can handle, I have Aquaphor, Pramasone, Miaderm and none of the above stop the acidic pain. My husband went to get some cornstarch and boxer shorts for me so I can have air get at it, I also sit in sitz bath when I have to use bathriim, hurts, but not excruciaitingly,, but awful close to it, sorry guys, I have never felt this kind of pain.

Cindy


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MYSTYMANE's Photo MYSTYMANE Posts: 64
4/18/09 1:03 P

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No he hasn't tested for a UTI, he asked if it hurt/painful when coming down or only when it hit the vaginal wall, and it's only when it hit the walls. I did get advice from the nurse, but the creams and advice are not helping the brning, I can't go on with treatments when I am in pain like this did not sleep last night was up diff times etc, :-(((((

Cindy


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MOM2ACAT's Photo MOM2ACAT SparkPoints: (158,720)
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4/17/09 7:14 P

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I would call the radiation nurse, and ask her. It's probably something that happens with radiation in that area, but that does not mean you need to suffer with it!

When I had radiation in the past, the radiation nurses were excellent to talk to about problems relating to side effects, and they know what to do to help make you more comfortable.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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PINKPADDLERJUDY's Photo PINKPADDLERJUDY Posts: 381
4/17/09 12:49 P

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It sounds like you pain is from the contact of the urine with the skin? I would think some kind of ointment to block that, like the others said, would be what you need.
If it's more like a burning like a urinary tract infection, maybe you could try pyridium. Here's a link to the usage for it... www.rxlist.com/pyridium-drug.htm#ids
I've been fortunate in that I haven't had a UTI in ages, but I recall taking that & it instantly relieved the pain.
And I think with radiation side effects, it's best to talk to the radiologist rather than your oncologist. Sometimes the radiologists end up sending their patients to hospital wound treatment centers.
Best healing wishes to you!

Judy

“If the world seems cold to you, kindle fires to warm it.” -Lucy Larcom


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LORI2008's Photo LORI2008 Posts: 1,624
4/17/09 12:45 P

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Has the doc tested you for an urinary tract infection? If the side effect was expected, he may overlook the possibility - but if the medication that's supposed to take care of the side effect isn't doing it's job, maybe the problem isn't from the side effect. Just a thought.

Lori
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4/17/09 12:45 P

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Mysty I'm glad you're getting some good help. I see Sharon has some good advice for you. You might call the Dr. and ask him about what she said. Do it today before the weekend gets started. Hope

Hope
co-leader of Challenged by Arthritis

co leader of Surviving Cancer. My motto is:
If God is for you who can be against you. Romans 8:31
If at 1st you don't succeed try try again

Henry H. Palmer teacher 1840
Tomorrow is a new day


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SHARK2003 Posts: 273
4/17/09 11:39 A

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In answer to your questions; I remember the soaks being very soothing. Prior to that I remember being in a lot of pain throughout the whole area. My doctor prescribed the same type of cream and it did not help at all. Let as much air get to the area as possible. At night I just wore a short nightgown. Hope this helps. You are in my thoughts and prayers.
Sharon

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KIPPY_63's Photo KIPPY_63 Posts: 851
4/17/09 10:47 A

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Hi Mystymane, I have never been thru this myself as radiation was ineffective against my cancer type. I would try some good old diaper rash ointment. It sounds like the burning is very excruciating. How about some A&D ointment, zinc oxide type cream used for Diaper rash? That stuff is a bit more durable than plain vaseline and may protect your tissue a little better.

Best wishes for you as get thru this part of the journey... I know many who have had it and it was not easy. May God make these last bit of treatments for you more tolerable by healing you and bringing you the answers you need.

emoticon

Edited by: KIPPY_63 at: 4/17/2009 (11:45)

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MYSTYMANE's Photo MYSTYMANE Posts: 64
4/17/09 10:04 A

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Thanks Sharon, do they help when urinating I mean take off the acidic pain?? Thank you for the answer I know this group is really great I don;t post a lot, but will try to more :-)

Cindy


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MYSTYMANE's Photo MYSTYMANE Posts: 64
4/17/09 10:03 A

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Thanks Hope and my Dr prescribed a cream that cost 70.00 and to be very honest did not do anything in the way of either numbing or cutting the burning. I let them know right away what is going on they are really good helping, but I know there is someone who may have gone thru this and can help cut the burning, thats the biggest problem now.

Cindy


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4/17/09 9:58 A

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Hi Mysty I still think you ought to call your Dr. and tell him your symptoms. He would want to know. The longer you put it off the longer it takes to heal. They don't mind you bothering them. Tell them everything you told me and explain how it hurts to pee. Have you tried vaseline? Ask the Dr. if that would help. When I was sore from my colonoscopy I had gone and gone and gone and I was really sore. I couldn't touch my bottom without hurting. I put vaseline on it and it healed in 1 day. I applied it whenever I wiped it off. It was also hurting where I peed so I put it there too. Good Luck I have people praying for you. Post in the chat room. Are you a new Member or have you been on for awhile? Its hard to keep up with all the new ones. Martha_Ann or Mom2acat might be able to help you or Outdoorgirl could help you also. You'll find them in the chat room all the time. I see someone has helped you. Do what they say. Hope

Edited by: HOPE2BE at: 4/17/2009 (09:59)
Hope
co-leader of Challenged by Arthritis

co leader of Surviving Cancer. My motto is:
If God is for you who can be against you. Romans 8:31
If at 1st you don't succeed try try again

Henry H. Palmer teacher 1840
Tomorrow is a new day


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SHARK2003 Posts: 273
4/17/09 9:54 A

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Mystymane:
Ask your health care professional, or your oncologist to prescribe some Dombraro Soaks. You put them in water, ring them out and apply to the affected area. I was through the same thing; a friend of mine who is a nurse, got some for me and they really helped a lot.
I hope this helps.
Take care,
Sharon

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MYSTYMANE's Photo MYSTYMANE Posts: 64
4/17/09 9:03 A

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Hi hope,

I am ghaving radiaiton on the lower abdomen, consequently it is burnung the vagina "BADDDDD" and the anus, I bought some cream, but still when I urinate it burns like acid, is there something I can use down there that would numb it maybe ,,,,,,it is making me nauseas whenever I urinate, it hurts so so so so badly. I am off radiation until the 20th want to see if it will heal, I dont think so....then haveabout 15 treat,ents left more burning ...Please Please can you or someone help me, I cant eat as I feel nauseas from the pain.

Cindy


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