Mayo Clinic has not called me back yet. The key to any change in cancer treatment for me is to obtain access to the PICRAY medication which has the potential to extend my life significantly. I suspect Mayo Clinic doctors are reviewing the information that my Aurora doctor sent them to see if they can gain access to PICRAY which will cost about $20,000 per month for as long as I live. I need to gain a “compassionate use” agreement with the manufacturer or get my insurance to pay this astronomical cost.
I contacted my political representatives in congress to see if they may be able to help me obtain access to the drug from the manufacturer or get insurance approval. I doubt it will help but its better to investigate all options. Politicians should be put to work in any case.
My current standard cancer treatment is effective but it will not be as potentially useful as PICRAY. My current lifespan with standard treatment is estimated to be on the order of years. My doctor thinks that PICRAY would add a significant number of years to that total. PICRAY is currently only approved for breast cancer but my colon cancer has the exact same weak mutation. I guess this is a rare condition because colon cancer is not yet approved for PICRAY treatment. The medication may not necessarily be a “magic bullet” but my doctor thinks it has a high probability of success.
My urethra had radiation damage with associated scar tissue from previous radiation treatment. I will be getting a balloon treatment near the end of the month in an attempt to correct this blockage. I really hope that it works. The alternatives are inconvenient and unpleasant.
I think that I scared the poor doctor that was testing my bladder and urethra. Normally this test is painless but I found it to be extremely painful. I used some non-Christian words and threatened to kill the doctor during this test and I apologize for that. The doctor decided that the next procedure of this type would be done in the hospital with anesthetic.
My future cancer treatment is dependent on my ability to obtain access to PICRAY. My doctor thinks that I should be switched over to a complete PICRAY medication treatment and that the chemotherapy should end. PICRAY is just a simple pill as I understand it. Mayo clinic may not be able to get me into a trial but there are still some other clinics to try if Mayo can’t get the job done. The UW Hospital in Madison would be the next attempt.
My insurance may pay some treatment travel costs and I have had some kind offers of assistance from Christian friends for some of those costs which may not be covered. Froedtert was a disappointment because they were unable to help me. Froedtert Hospital is near me in Wauwatosa and would have been convenient for me. UW hospital in Madison would also be somewhat close. Hopefully Mayo clinic will work with me and it will not be necessary to go to other places.
I really dislike travel. I used to travel extensively in the United States and Canada for work purposes. I did enjoy the actual work at various locations. I just never liked the process of getting there. Never really traveled anywhere for fun. I much prefer working in my garden or in my garage. Traveling with an ostomy, catheter and other medical conditions doesn’t appeal to me, however, you need to do what is necessary in life.
Nothing is certain except that God is with me. Even when I die, God has promised to raise me from the dead through faith in Jesus. I am fighting a no-lose battle. God is able to heal me and extend my current life span. I put myself in his hands.
I may need to stay at Mayo clinic in Rochester, MN for extended periods of time for cancer treatment. The least expensive lodging that I can find is to stay at a nearby RV park with a simple RV trailer. Is there anyone that could loan or rent me some type of RV trailer or small camper? This treatment plan is not for sure at this time and I don’t have the details nailed down. I have never gone camping and I haven’t traveled anyplace in many years. Mayo clinic has not even responded to my doctors referral yet but I may need to act swiftly if they are interested in treating me. I am trying to be prepared.
Froedtert Hospital was unable to help me with obtaining a clinical trial for the PICRAY cancer medication. My doctor is strongly recommending Mayo Clinic so I agreed to have a referral sent there. The person doing the referral said I should expect a fairly prompt response one way or another from Mayo Clinic. Hopefully, they can get me into some type of trial for PICRAY or anything that can fight the cancer.
My grandmother had cancer for about 30 years and that was a long time without more modern treatments. She had cancer until the day she died at 96 years old but it never killed her. She died of old age and maybe I can do the same. She had faith in Jesus to carry her through anything. It’s my intention to have that same faith. Even if I can’t match her age record, I would like to make the best use possible of the remainder of my life.
My doctor estimated my future lifespan to be on the order of years without PICRAY. I believe that God gave the intelligence to doctors to develop PICRAY and other cancer treatments to extend peoples life when they have illness. God can heal a person directly but he generally uses doctors and medical knowledge to heal in my experience. Either way works for me because I am not a fussy person.
I may need some minor financial help to travel to Mayo Clinic. I am not sure at this time if Mayo will accept my case so it may be premature to worry about funding trips up there. Not sure how many times I will need to go or how long I would need to stay. I don’t really have any logical choice but to go to Mayo Clinic if they approve my case.
Someone suggested that I set up a GO FUND ME on facebook and that seems like a good idea to me. It is about a four hour drive up to Rochester from where I live and I’m sure a simple hotel is probably around $70 to $150 per night. My car may be able to make it there and back but it is a little on the well used side of travel. I have not traveled in a long time but I used to travel quite a bit for work. I never had to handle the travel arrangements while working because the company paid for everything back then. I’ll probably wait to see how Mayo Clinic responds.
I went in to the doctor for some urodynamic testing. Doesn’t that sound like fun? I seem to feel much more pain than the average patient during these test procedures. He was going to do some bladder capability testing but he wasn’t able to complete his plan.
My urethra is severely scared and will not pass urine by itself at this time. The bladder capabilities are irrelevant. There was a long hair growing inside the bladder that needed to be removed. The radiation treatment for cancer that I received is the most probable cause of the scar tissue in my urethra. Bummer.
There are three potential treatments for this situation in my case.
Catheter
Balloon procedure
Bypass the Urethra
The first thing we are going to try is the balloon procedure to stretch out the urethra and restore function. That would be my preferred resolution of this issue. The urine doctor asked me the situation with my cancer to determine if it would be better to bypass the urethra because I might not have long to live. Bypassing the urethra is relatively painless and a complete solution for someone that does not desire normal function to be restored during their short lifetime. I am not quite ready for that type of thinking and I believe it is premature.
My Aurora oncologist wrote a referral to Froedtert hospital. We are hoping to gain access to a medication called PICRAY on a trial basis. Anderson clinic in Houston, Texas was unable to get me into a trial when he referred me there.
Froedtert is setting up an appointment with me to review my situation. They may have other alternatives. PICRAY has been approved for breast cancer but not for my type of colon cancer, however, my colon cancer has the identical PIC3 mutation that PICRAY can treat in breast cancer. There is a good probability that PICRAY could be an excellent treatment for me. Froedtert is in Wauwatosa, WI which is about an hour away so it’s more convenient than other possible options.
I think that God is in control of all problems. God does give people free will which may affect their life span or living conditions. I am not worried about the ETA of my final destination because I believe God is with me. That doesn’t mean I want to hurry things up but I would like to do something useful along the way and enjoy the trip.
It turns out that the Anderson Cancer clinic in Houston, Texas can’t get me in any PICRAY cancer medication trials at this time.
There is a possibility that Froedtert Hospital in Wauwatosa may be able to help me so my Aurora doctor put in a referral there. Froedtert is a research hospital and may have access to more clinical trials. I would greatly prefer Froedtert over other options because it is within easy driving distance.
The next option after Froedtert will probably be Mayo clinic in Minnesota. Minnesota is a longer trip and would be more expensive for me. Right now the situation is fluid in nature.
My objective is to get some kind of access to the PICRAY medication which can probably treat my cancer’s mutation. There may be other possibilities available but the PICRAY looks like the most reasonable option.
