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mrsalvo

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Wanted to let everyone know that there is a new treatment for cancer that looks promising, with the use of the Tuberculosis virus.
As many of you know I am currently a fulltime caregiver to my Dad, he is a young 86 years old. "Laundress" is correct in stating the handling of dirty linen even in one's household has changed. This summer my elderly father was diagnosed with bladder cancer, and the treatments for cancer is changing. His treatment consisted of filling his bladder with a Tuberculosis virus solution once a week for 8 weeks, he would hold the solution for 2-3 hours then void, at home. The treatments allow a persons own immune system to fight the suspicious cells, they have had good success rates with this treatment, but it is still new. The instructions given to me was to fill the commode with 2 cups of bleach upon voiding and let it sit for a while before flushing. I was told specifically by his Dr. to be VERY careful going into his bathroom and bedroom, and not to go around any one with a compromised immune system and keep a distance from any baby's and other elderly people. We lived a hermit life this summer. Purchased disposable gloves and face masks to wear the day of treatments and the day after, when going into his quarters. Bought lots of bleach and Lysol for precautions.
Laundry was kicked into another orbit. For the first time in my life I seriously wanted to check out a HE front loader with a sanitize cycle. Alas, had to trust the T/L Speed Queen to get the job done. I used hot water, All Free & Clear and Sam's Club Wind Fresh. Everything was hung outside on the clothesline (for hours). Glad to know that my precautions, being careful, and the SQ held in good stead.

Having been around all the other types of treatments, I honestly don't know what is worse. Surgery, chemo, radiation, and now TB. I will say this, the TB treatments certainly puts additional stress on the caregiver and family for their OWN health. We will find out the beginning of Oct. if the treatments took. If not, we will have 8 additional weeks of more treatments. Saw my own doctor 2 weeks ago and was given the clear to join the land of the living again, to go around others. Woo hoo!!!! It's been a long 10 weeks.
 
WOW! That is some treatment. I am guessing that this is done via an indwelling catheter to enable the bladder to hold the solution for two hours. Most people would not be able to hold it that long and you certainly would not want that culture leaking if you have to take such precautions.

 

I am surprised that you were not told to use chlorine bleach on his laundry. Do you not have a dryer? GE Dryer literature used to state that dryer temperatures sanitized laundry. I know that sanitizing is not sterilizing which requires live steam, I think. I think I remember my father saying that TB is a very hard microbe to kill.

 

Best wishes.
 
Wow, indeed. Have never heard of the TB treatment; thanks for sharing the information with us. It certainly does put a lot of responsibility on the shoulders of the caregiver. I was exposed to TB about 15 years ago and had to get tested regularly for quite awhile before the doctor gave me the free-and-clear. It's nothing to mess with, that's for sure. My best to you and your dad! Hope the treatment works out well.
 
I have had two friends who have had this treatment

It has been very effective, and they are both post 10 years.  Both have had reoccurrences, and both eventually have had bladder resections, in any case the Tuberculin treatments slowed and prevented the spread of the cancer where it remained within the bladder walls.

 

Funny thing, the demographics for a bladder cancer patient is a >50 overweight male who smokes.  Both of these friends are 50ish  non-smoking trim females.

[this post was last edited: 9/15/2017-12:58]
 
As a caregiver for an incontinent stroke survivor, I can relate to the additional workload this treatment requires.   I can burn out on laundering as it is, and although I have a FL machine with a "sanitary" cycle, tying up the machine for such a long period each day would be a real PITA on top of what I already deal with.  As it is, during line drying season I expedite the process by simultaneously using the Maytag 712 for items that can get by without a high speed spin while the FL is handling items that benefit from 1,100 rpm.

 

Best wishes for a successful treatment and more carefree laundry days ahead.  I know what you're going through.
 
Paulo, thank-you, I'm hoping it works as well. I do not wish to go through this again.

Tom, Yes the leaking was a concern, very much so as we've had incontinence issues before this treatment started. I was surprised as well concerning the chlorine bleach in the laundry, it was never mentioned, never. TB is a VERY stout and tough virus, plus the fact that it can be airborne is frightening. I do have a Whirlpool dryer, but I thought the sun would help kill and freshen the linens. Thank-you for the best wishes.

Eugene, I am so sorry you had to go through all that when you were exposed. I had about 4 days that I didn't feel good at all, I became weak, no energy, and didn't know what I was going to do. I did bounce back after spending all available time that I had in bed. After his treatments, I went to my own doctor to get checked. He DID NOT know anything about treating cancer with TB, he left the exam room and had to research it. So, not even all the doctors are aware of this. But I got the go ahead and clear to be around others.

Harley, thank-you for posting! I'm glad and relieved to know the treatments have worked! Was surprised though it was 10 years ago. My Dad is the WW2 generation, where cigarettes and coffee (pots of it daily) were the daily mainstays, I'll leave it there. My mother died young of breast cancer, she never smoked and did take good care of herself...so who knows!

Ralph, I'm tired of doing laundry!!!!....it's time to move on to something else. LOL. I do appreciate the quick cycles of the SQ, that has turned out to be a blessing, ran about 3 loads a day and I didn't wash my clothes with his either. Laundry is back to normal now. And I highly respect other caregivers.

My Dad also has Alzheimer's as well. During treatments he started sleeping up to 16 hours a day, and would mention how tired he was. So far, right now, we're doing pretty good all things considering. Just wanted to let everyone know of the new treatments. My very best to everyone on here.

Barry
 
UPDATE: Happy Dance!!!!! The 8 treatments this summer took. We had a Dr.'s appointment this week and the Dr. checked his bladder and everything is looking very good. It's a very effective treatment, I think better than chemo or radiation. The precautions and self quarantines, are absolutely necessary. My Dad handled the treatments very well, though he became more tired and listless as the treatments progressed.
Doctor wants to do 6 more treatments starting next week, then check him again towards the end of the year. So we will be back to living a hermit life for 6 weeks. LOL. (I also have my own colonoscopy scheduled next week, so next week is very full and I'm working hard this weekend to get things ready.....again.)

I would like to think my care and hard work this summer helped him beat this cancer, the additional work load can be very straining and scary too. So far it seems to have paid off.
I'll be doing laundry almost everyday once treatments start again.

Barry
 
I am very happy for you and your dad. You did a great filial duty in helping him with the treatment.

Does your colonoscopy team know about your dad's treatment regimen at home? You mentioned going back to a hermit's life during treatment. I don't know how you mean that, but I can't think of anything less hermit like than that procedure or is the colonoscopy before the next round of treatment?
 
It certainly is heartening to hear the news, to see light at the end of the tunnel!

Tom, the "hermit life" is at the Dr's request. Doesn't want my Dad around kids, babies, other seniors, or anyone with a compromised immune system. The only time we left the house, for 10 weeks, was to go get his treatments and get someone to cut his hair. I left to get groceries, but only during very slow periods at the grocery store so I wouldn't be around others for very long, limit contact. One Dr. told me to wear a face mask when I go out. I got a flu shot last week, just as a precaution.
The "hermit life" is for extended periods.

I'm anxious to get my procedure over with. There is a little time between his appt. and mine. Yes, my Dr's office is aware of the circumstances. I'm fixing soup and salad to eat this weekend, and that's just about it. Don't remember all the diet restrictions the first time I had this done 8 years ago. I hate that "milkshake."

Barry
 
I am angry and I feel betrayed, absolutely beside myself. Will never trust product packaging, ever again.
My Dad is back in treatment and today I was cleaning and wiping down his bathroom and the household with Lysol Power Bathroom Cleaner, thinking I was cleaning, sanitizing, disinfecting surfaces of the tuberculosis virus that we are in contact with. Wrong.
Out of curiosity I called the number on the back of the bottle and explained our situation, and asked the representative if this product kills that virus (confirmation), since it's advertised on the front packaging it "kills 99.9% of virus & bacteria" ....turn it over and on the back it states "kill's 99.9% Escherichia coli 0157:H7, Rhinovirus Type 39, Staphylococcus aureus and Rotavirus WA on hard nonporous surfaces in 10 minutes." The representative stated that she had never heard of this type of cancer treatment, well that's their job to stay on top of it. She put me on hold for 10-15 minutes and came back on the line and told me "it's 100% ineffective against tuberculosis, and nothing we sell would be effective." My first thought, this IS misleading packaging, and told her so, that it kills 99.9% viruses. (My second thought was what other virus / bacteria does it NOT kill.)
So listed on the back of the bottle is: "Questions? 1-800-228-4722 For ingredient and other information www.rbnainfo.com".

I'm so mad right now it effected my blood pressure. I'm still in the process of spraying everything down with bleach and disinfectant wipes, I hope it will do some good, but the packaging on the Clorox bottle says the same thing.

Believe me I'm going to start digging, deep, and find out what are my options. I feel like suing them. Lysol is a trusted brand. WAS.

Anyone's thoughts?

Barry
 
disinfecting

Barry--I've read your postings with interest. I come from 40 years of radiology and imaging administration. We deal with machinery that can have all types of patients in contact with the surfaces. Oh, we can use isolation drapes, etc., and in the early days of AIDS we did it constantly. The problem is, so many patients aren't to the point where it's known to be necessary.

I'm really surprised that his physician(s) didn't connect you up with some serious sprays and wipes. They certainly exist and are used daily in medical settings. I can remember a series of wipes that we use in imaging, having color-coded tops to the canisters based on how long the surface had to be left to dry before the next patient contact.

Staphene was a standard for many, many years and there are just too many here for me to remember.

I'd suggest you either talk to the physician who didn't do his/her job getting you supplied with what you needed, or that you buttonhole a nurse or other health care professional who can help you. These are not hazardous materials by any means, in the hands of someone trained to use them. But they are more potent than the stuff you buy at Wal-Mart.

I'll add my name to others in admiration of what you're doing.
 

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