So we visited the Moffitt cancer doctor yesterday. I've never been to Moffitt before - and our appointment was early so the place wasn't all that intimidating. But I have to say, as we left, I saw hundreds of people streaming in and out of there - I can have no other words to describe how I felt but one - sadness. So back to the doctor's visit. He walked in and introduced himself, opened up my file and started reading out loud my test results (he didn't have a copy of my negative cytology report that was supposed to have been sent over). Anyway, after he read everything he told me what they were going to do with me. He said, "We're going to have you go through 6 rounds of BCG chemo" I interrupted at that point and said that I was told I was supposed to have Mytomicin because BCG was unavailable in the United States. He said they received 50 vials last week and are supposed to have more this week and he feels it is more effective than Mytomicin. He continued with the regimen they were going to put me on. He said they would do the first 6 rounds and then take a break (maybe biopsy me? I can't remember) and then do another 6 rounds and then biopsy me, and then a maintenance therapy that consisted of another 3 rounds in 3 months repeating the 3 rounds at 6 months and 9 months and 1 year and out to 3 years. He said the possible side effects are frequency, urgency, burning, high temps in the 104 degree range, fatigue, and malaise. He said the toxicity is cumulative with the symptoms getting worse towards the latter end of treatment. The high fever sometimes requires hospitalization with IV antibiotics. He mentioned that the efficacy of maintenance treatments in preventing progression is debatable but they believe it does, and therefore recommend it.
I felt I was in that old Maxell commercial with my hair being blown back. It was obvious he and I had two completely different agendas. When it was apparent he was done and was going to leave I finally found my voice and announced that I had come to him because I had several questions I was hoping he could answer. I started asking about his experience with treatment of the cancer through diet, and he immediately replied that there are no clinical trials to support that. I told him I understood that, but I was asking about his experience - had anyone else tried that and been successful? He never really answered the question and just said that there could have been people who experienced remission but that he had a guy right now who was treatable a year ago and did nothing and now they're going to have to remove his bladder (which to me was not answering the question and not at all what I am doing - I am not doing nothing!). Anyway, I asked him if something I read was true - that the cells in the bladder regenerate every 7 weeks, and he just said that all cells regenerate (didn't answer my question). So I said that my thinking is that if my cells are regenerating and I'm providing them good fuel so that they regenerate with good cells, and I understand there are no clinical trials to support this most likely because telling a patient to eat raw organic food doesn't pay well, couldn't that be helpful? He just said he didn't know. I told him I didn't want to be stupid about this, but my thought was to give it 2 months (for which I am almost 1 month in) and then do a biopsy and if the biopsy shows cancer then I do the chemo. Because to me, treating with chemo is just treating the symptom but I'm trying to treat the cause. I asked him if he thought that waiting another month was too long, and he said no, that shouldn't be too long. So as he got up to leave he began telling the nurse practitioner to call upstairs to see if they could get a BCG treatment ready for me so I could go from his office upstairs and begin treatment. It got quiet in the room and then he looked at me and said, "oh - you're going to follow up with your original doctor", and then shook my hand and said it was nice to meet me and left the room.
I can't say it was a complete waste of time because I did get the answer that I'm not waiting too long to do chemo if I give this diet a 2 month chance to work. But I must say I am a little shocked that doctors don't seem to put ANY stock in what we put into our bodies, or even want to talk about possible causes. You hear about foods that are 'known carcinogens' or 'cancer inhibitors' - so are those true statements or just marketing? So, maybe I'm just on this diet to get my body in peak performance to tolerate chemo? Or maybe our bodies can heal when given the right fuel? I don't know. But I do know that I so appreciate your prayers for wisdom for us! Sorry this was so long. I hope everyone is having a great week so far! Blessings!
I felt I was in that old Maxell commercial with my hair being blown back. It was obvious he and I had two completely different agendas. When it was apparent he was done and was going to leave I finally found my voice and announced that I had come to him because I had several questions I was hoping he could answer. I started asking about his experience with treatment of the cancer through diet, and he immediately replied that there are no clinical trials to support that. I told him I understood that, but I was asking about his experience - had anyone else tried that and been successful? He never really answered the question and just said that there could have been people who experienced remission but that he had a guy right now who was treatable a year ago and did nothing and now they're going to have to remove his bladder (which to me was not answering the question and not at all what I am doing - I am not doing nothing!). Anyway, I asked him if something I read was true - that the cells in the bladder regenerate every 7 weeks, and he just said that all cells regenerate (didn't answer my question). So I said that my thinking is that if my cells are regenerating and I'm providing them good fuel so that they regenerate with good cells, and I understand there are no clinical trials to support this most likely because telling a patient to eat raw organic food doesn't pay well, couldn't that be helpful? He just said he didn't know. I told him I didn't want to be stupid about this, but my thought was to give it 2 months (for which I am almost 1 month in) and then do a biopsy and if the biopsy shows cancer then I do the chemo. Because to me, treating with chemo is just treating the symptom but I'm trying to treat the cause. I asked him if he thought that waiting another month was too long, and he said no, that shouldn't be too long. So as he got up to leave he began telling the nurse practitioner to call upstairs to see if they could get a BCG treatment ready for me so I could go from his office upstairs and begin treatment. It got quiet in the room and then he looked at me and said, "oh - you're going to follow up with your original doctor", and then shook my hand and said it was nice to meet me and left the room.
I can't say it was a complete waste of time because I did get the answer that I'm not waiting too long to do chemo if I give this diet a 2 month chance to work. But I must say I am a little shocked that doctors don't seem to put ANY stock in what we put into our bodies, or even want to talk about possible causes. You hear about foods that are 'known carcinogens' or 'cancer inhibitors' - so are those true statements or just marketing? So, maybe I'm just on this diet to get my body in peak performance to tolerate chemo? Or maybe our bodies can heal when given the right fuel? I don't know. But I do know that I so appreciate your prayers for wisdom for us! Sorry this was so long. I hope everyone is having a great week so far! Blessings!
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