Mets Day 991: Welcome to NIH's Urology Department

Today I met with Dr. Piyush Agarwal, NIH's chief urologist, and his nurse practitioner, Rebecca Dolan. THis was my first contact with NIH's urology department. It is an efficient and well-oiled team. I reviewed my case history with Ms. Dolan, who closely questioned my on when I started and stopped each blood thinner, and when my bleeding began. I had to refer back to my prior blog entries to confirm some of the dates. I also pointed out an odd little rash that recently had formed on my knees. I told her that I hadn't changed any soaps or lotions or detergents, and that the I noticed the rash a few weeks after I started taking the Xeralto. She allowed as that it was a possibility that the two might be connected, but doubted it. Keep an eye on it, she said. She was far more emphatic that there was a rather clear cause and effect between my taking the Xeralto and the gross hematuria.

When Dr. Agarwal joined us, he said that there was relatively little experience with Xarelto, metastatic cancer, and neobladders. Although he suspected that my gross hematuria was the likely result of the Xeralto loosening some tissue in my neobladder, he said that he wanted to rule out the possibility that my metastatic cancer had emerged in either my kidneys, ureters, or elsewhere in my urothelium. So next Monday I'll have a CT urogram to check and (most likely) rule that out. He also scheduled me for a cystogram for January 20. I'll be under general anesthesia for that, so in case he sees anything that needs to be cauterized, he can take care of it. He'll do that first thing in the morning. I was previously scheduled to have a CT that morning followed by a clinic visit with Dr. Apolo; we'll see if we can postpone that by a couple of hours so I can walk myself to the CT scanner.

Dr. Agarwal recommended that I resume taking the Xeralto, although I should stop it two days before coming in for the cystography. He said that having gross hematuria was better than having pulmonary embolisms. He said that it was a shame that I was allergic to the low molecular weight heparins, and mused that, if I was unable to continue on the Xeralto, I might have to consider an IVC filter. I'm not excited about that idea. It's an option to consider later, and only if I have to. 

Mets Day 987: Merry Bloody Christmas

A couple of days ago Dr. Aragon-Ching suggested that I restart the Xarelto, which I did on Christmas Eve. Sure enough, on Christmas Day, I had blood in my urine. We've clearly established cause and effect. So it was a red Christmas after all.

I have an appointment at NIH's chief urologist next Tuesday afternoon. I assume that he'll do an cystoscopy and check the condition of my neobladder. I am to skip my Xarelto dose on Monday and Tuesday. Hopefully he'll be able to assess the condition of my neobladder, and how serious the lesions. It's unlikely that the bleeding is caused by cancer in the neobladder, but is instead just a side effect of the Xarelto. I suspect we'll consider alternative blood thinners.

Several people have shared with me their experience with warfarin. I understand that NIH is not a fan of using warfarin with patients with metastatic cancer, because it carries with it a significantly increased number of side effects and complications (some of which are summarized in this Medscape article). I'm not sure what the doctors will recommend, so I'll just wait and see. 

Mets Day 981: No Xeralto, no bleeding

Following my oncologist's advice, I stopped taking Xeralto on Tuesday. By Wednesday evening my urine was free of gross hematuria, and I've seen none since then. The question thus is whether it's more important that I stay on a blood thinner to prevent the recurrence of pulmonary embolisms, or stay off the thinner and prevent gross hematuria. I'm awaiting further input from my doctors.

Meanwhile, I still think it's a good idea for a urologist to do a cystoscopy into my neobladder and see whether there are any lesions, and generally assessing how it's doing. Johns Hopkins called me to say that they had managed to move up the cystoscopy with Dr. Bivalacqua by two weeks, to January 27. It's still a long time to wait. I also exchanged emails and phone calls with the patient care coordinator for Dr. Piyush Agarwal, the head bladder cancer urologist at NIH, and she is trying to schedule an appointment for me with Dr. Agarwal.

Meanwhile, I'm fighting a chest cold that I recently picked up, so I am less active than usual. Moss is growing on my north side. I have been drinking lots of fluids, although I made the mistake of taking a slug of blue Powerade Zero and immediately being transported back to my days of chemotherapy. That taste associate shall not be broken, it seems.

Mets Day 978: Gross hematuria

For the past few days I've had gross hematuria - visible blood in my urine - every time that I have voided. It's usually bright red blood that accompanies the initial flow of urine and mucus that a neobladder generates. Yesterday I was also feeling like I had some cramps, and a little better understanding of how women periodically feel. I reached out to Dr. Trinity Bivalacqua at Johns Hopkins, who was the last doctor to do a cystoscopy on my neobladder, to request an appointment. After some checking, I was told that the next available appointment two months away. Wow. So I called Dr. Harold Frazier, who I had also seen in 2012, but was told by his scheduler that, without specific instructions from the doctor, I would have to have an office appointment before a cystoscopy.

So this morning I sent the following to my oncologist:

Dr. Aragon-Ching:

For the past several days, I have had gross hematuria nearly every time that I void. The blood is bright red and usually in the initial spurt of mucus from the neobladder. I have called Dr. Trinity Bivalacqua at Johns Hopkins, and have been told that he would like to do a cystoscopy, but according to his scheduler, his first available appointment is not until February 10. The scheduler is looking for an earlier time slot. In the meantime, I'd appreciate your thoughts.

1. Should I try to have Dr. Hal Frazier of GW MFA look at me? I called his scheduler but was told that she could not schedule a cystoscopy unless he had ordered it. I left a detailed message with his nurse, noting that you were my oncologist. If appropriate, would you please send him a note?

2. Should I continue with the Xeralto? Should I divide the pill in half and take each half 12 hours apart?

3. Is there anything else that I should be doing? I have been staying hydrated.

Thank you for your continuing care.

She replied in just an hour so so as follows: 

Hi Mr. Brothers,

I think hold the Xarelto for now over the next couple of days to see if it eases up...I shall pass along your message to Dr. Frazier as well...Please do stay hydrated...

jba

Looks like it might be a red Christmas . . .