A Week in a Life That I Wish Hadn't Happened

After being denied Xtandi, and approved for Zytiga, I was looking forward to moving on. (difference $1000)

Last Wednesday, I had another bout of Melena, and wound up in the ER. And, again, my bladder was blocked up. My Hemoglobin was at 7. I had the Zytiga with me just in case I could start it while in the hospital. After two transfusions, and two iron IV's, my Hbg was at 10, and I was released on Saturday morning. In the mean time, I had started the Zytiga on Friday morning, along with Prednisone, of course.

I never had the opportunity to experience a seizure, and the first one absolutely freaked me out. I was back in the ER in about six hours. At this point, I had two doses of each, Z and P. A lot of those guys with capital letters after their name kept bringing up Vasovagal Syncope, fainting. I seemed to irritate some of them when I said I didn't faint. It also seemed pretty important that you must piss yourself to prove you had a seizure. I happened to be sporting a Foley, and a nice Bard monster bag. So, I had no idea. When I came too, my son was on top of me, keeping me still. My hands were killing me with pain. Before I knew it, I was on my first ambulance ride.

I got out on Tuesday afternoon. After a battery of tests, no cause. Just a one off, kinda like a walk off homer, I guess.

Now, I'm a bit more...scared. I can't deny it. Just one more issue IT throws at us.

Peace all, Joe

9 Replies

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  • Who Joe is denying you Xtandi? My Doc. is all too eager to get me on it when my PSA sneaks its head out. He tells me it will cost me nothing. I am on Medicare with a serious supplemental---But he said it to me so matter of fact---that I did not ask any Questions. My Advocate at the Prostate Cancer Institute--is on it and he does nor pay--I have 2 friends in Florida that are on it and they do not pay either. You might want to get a hold of the Institute and get an Advocate---all are prostate cancer patients with technical backgrounds, and can probably direct you to anything out there. Or answer questions about you disease, and where you are, at anyone time. You may or not know there are over a dozen or so variations on the disease, based on pathology.

    Good Luck--Just Prayed for you!

    Nalakrats

  • The PCRI helpline is awesome. I am nearing medicare age and I wonder if you would share with me which is your serious supplemental, thanks

    Dan

  • Interesting you ask Dan--as I was with my lead Doctor today--and he asked me the same question. Reason he asked, he has not seen my reaction to get to undetectable PSA the way it happened with me having Ductal Cribriform.

    But to answer--I have 4 In order of what I think is most Important.

    1] Pectasol-C Amazon about 69 Dollars for a month---powder not the capsules. You will have to throw it back in your mouth and wash it down--3 times a day on an empty stomach. This follows the 2 Clinical Trials now in progress. 5 Grams 3 times a day.

    2] Vitamin D3--5,000 IU's twice a day with food. Also get sunshine for more D3. I sun 45 minutes about 4 times a week.[In Clinical Trial at MD Anderson currently.

    3] Glutathione--500 Mg 3 times a day I do both with food and on an empty stomach with other supplements not mentioned here. I am going to add N-acetyl cysteine 600 Mg this week. As the cysteine is a precursor to Glutathione in the body. The body makes Glutathione from N-acetyl cysteine. And Glutathione does not get into the blood easily. But the Clinical trial uses an IV to get it directly into the blood. So I will do both, this week. Glutathione is the mother of all antioxidants---and scavenges up free radicals. Cancer may be considered a free radical---and it appears that Glutathione attaches itself to the cancer cell. May not work for all prostate cancers, or all cancers but I am high on this.

    4] Super Vitamin K1-K2 complex. Cannot take if on blood thinners. If you are on ADT as I am K2 transports calcium to the bone. And K1 causes ocosis when it gets near prostate cancer cells. Ocosis is a form of cell death.

    I get my supplements outside of Pectasol-C, from Vitacost.com---best prices, they sell Pectasol also but it is about 10 dollars more.

    So that is my top 4---I take others--but then again I have been into supplements for 45 years and educated in this stuff.

    Hope this helps--other questions--get back to me.

    Nalakrats

  • I Misspoke--it is the Prostate Cancer Research Institute--I think it is pcri.com--they have an 800 help line number

  • Hi Nalakrats,

    I will look into PCRI. The short story is that my insurance co. denied the Xtandi, but OK'd the Zytiga. That's when I went online and found the difference in cost was about a grand. It doesn't particularly bother me which med I'm taking, as long as it works for me.

    Peace, Joe

  • Hi Joe-

    So sorry to hear of your difficulties. When my husband's oncologist requested Xtandi he was denied and approved for Zytiga. It almost killed him with a terrible reaction which hospitalized him. Sooo. When they figured out Xtandi was a better choice the co-pay was covered by a non-profit organization that helped us. Our oncologist put us in touch with them.

    Hope your experience with Zytiga is a good one but don't take weird symptoms lightly and don't let the white coats do it either. They can be a little patronizing.

    Wifeinjamul

  • Awwwwww Joe.....I'm so sorry you've been through all of this. I'm glad you're doing a little better. That would be terribly scary and wondering if or when it may happen again. My sincere good thoughts for your well being.

    Most sincere,

    Jackie

  • I had to write a follow up after my catheter came out on Friday night. I guess I was messing with it too much, and the balloon drained, then out it came. It was about 10 pm. I woke up at around 4 am, in about as much pain as I could stand. I was so full of urine my kidneys were hurt. The best I could do to ease the pain was force out a few dribbles, and it actually helped til I got to the ER. Another cath went in and I drained a quart and a half. I was due to have it removed today, which is not happening. We'll try on Wednesday.

    Crazy, three ER visits in 11 days.

    Joe

  • Oh my goodness Joe!!! So sorry. Sending all healing thoughts, vibes and prayers.

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