johnny ur

Update Friday January 30th

It's been a few days since an update with good reason. The past days have been really tough to get through emotionally. I'll get to that all in a moment, let me deal with the trivial physical stuff first:

I'm still having a bit of trouble sleeping without getting night sweats. For instance, this morning I woke at 5AM soaked in sweat and just sat in a hot tub of water for 30-45 minutes, almost falling asleep. My appetite has been good. I'm going to need it. I'm down to 140lbs. This is not good.

All of this may have been affecting my emotions recently. On Tuesday, Sarah and I went for a walk around the block - the first time I'd done any physical activity outside of the house in quite some time. But rather than make me feel better, it actually struck somewhere inside of me to really upset me. My body, which led me up Africa's highest mountain one year ago, was now havig difficulty getting around the block. I broke.

And I broke. And I broke. And I couldn't control myself anymore. I was so tired - possibly from lack of a good night's sleep, maybe from malnutrition - but I couldn't stop myself from crying. I had never experienced anything like this before. And it continued on for the next day too - my body didn't want to move, I wouldn't say that I wanted to die, but I definitely didn't have anything inside to help me fight against it and this scared me.

All of my life, I had been the type of person who could deal with stress head on - putting things into perspective and finding some inner strength to get me through. Here I was feeling hopeless because I would sit on the couch and while not feeling particularly bad about anything at in particular, I would just cry. And I couldn't stop it.

If I was this weak now, how could I ever hope to be strong enough when this disease got tough?

I've been able to get out of this pothole for the time being with the help of some of my mom's Xanax, some sleep and lots of calls and emails from friends who have been super-supportive. But I have a new understanding of people who go through depression and need medication to help them. I never understood why, until now.

Update January 23

Just wanted to let everyone know how my two days after chemoembolization have gone. Yesterday, which was my first full day home from Hopkins after the procedure, was a loss of a day. I was extremely tired - seemingly sleeping two hours for every hour that I was awake. My appetite was low and I was basically in a cloud for most of the day. In the evening, I developed some low grade fever 101 F. But this was after feeling cold for most of the day.

Today has been much easier on the fatigue and appetite front, in the sense, that I had more of an appetite today - almost back to normal - and my fatigue was much lower. However, the annoyance today has been my body temperature. Although the thermometer is reading 98.6 - 99, every 30 secs to two minutes, I've had to deal with chills or sweats. Take my sweater off, put it back on. This has been tiring... I haven't been able to find a comfortable position to rest in all day. But if this is the worst of it all (more an annoyance than anything else), I'll be happy if my recovery continues so rapidly.

I did not take any pain medication today. Just one anti-nausea med in the morning (more for prevention than nausea), and my antibiotic. Hopefully, things are looking up, and looking up quickly. 

Update Jan 22

Thanks for all the well wishes. I know everyone has been concerned about how the chemoembolization (CE) went on Tuesday. By all accounts, it went well. Right now, I'm hopped up on pain and nausea pills so I'll post something more substantial in a few days when I can get my head out of the clouds.

Sunday Observation

I spent Christmas in Minnesota, getting a stent placed in my gall bladder. I will spend Inauguration Tuesday (arguably more important than Christmas) in Baltimore receiving chemoembolization. I wonder where I get to be for my 30th birthday on St. Patrick's Day?

Update Jan 14th - Don't TACE me, dude! Edition

After consulting with Dr. Jeff Geschwind at Johns Hopkins, I am going to proceed with Trans-Arterial Chemo Embolization. Dr. Geschwind, a major player in the field of cholangiocarcinoma, feels it has the best possible outcomes and we can do Theraspheres later if we're not satisfied with the results.

The biggest selling point for me was time until procedure. Theraspheres would take about 3-4 weeks (after angiogram and ordering beads etc.) whereas Dr. Geschwind is going to sneak me in late on Tuesday for the chemoembolization before he leaves for 10 days to Dubai, UAE on Wednesday. Sold.

Originally I was told by Mount Sinai that chemoembolization would be a dangerous option because my portal vein is blocked by the tumor and there is a possibility that by going through the hepatic vein all of the blood flow to my liver could be blocked off - which would be a major problem. Dr. Geschwind scoffed at this seemingly old-school thought process. He says that it is not a problem at all, that he has papers backing up his proposal and that he does the procedure all the time with blocked portal veins.

The chemoembolization procedure is similar to radioembolization (Theraspheres) where blood flow to the tumor is blocked off and the chemo drugs will be blocked in and delivered directly to the tumor over the course of some weeks. The drugs that will be used are Doxorubicin, Mitomycin, and Cisplatin. People react differently to this procedure some have very bad side effects, others have little to none. Obviously I'm hoping to be part of the latter group.

So Tuesday - down to Johns Hopkins. Procedure at 4:30PM. Stay overnight for observation. And hopefully enough energy to report back on Wednesday or Thursday.

Update Jan 11th

On Friday, I met with Dr. Philip Reid of the Central Jersey Oncology Group. Dr. Reid is going to be the "quarterback" of my treatment team - the doctor to lead me in the right directions, arrange scans and procedures, and make sure all clinical reports go to the right places.

After a discussion with Dr. Reid, I think Theraspheres at Johns Hopkins will be the right first step in my treatment.

Here's the gritty details for those who enjoy that kind of thing:
Theraspheres are a brand name for small beads which contain a radioactive element, Yttrium-90. This is a form of radioembolization. These beads are placed in the arteries that feed the tumor which has two effects: 1. It localizes the application of radiation, so that theoretically, only the tumor and not healthy tissue is being hit and 2. The beads can cut off some of the blood supply to the tumor (embolization) which is a necessity for the tumor cells to live.

Here's how the treatment works. I would go in to the treatment location on a specified date for an angiogram. This is a procedure where a catheter is inserted into a vein near my groin and fed upward toward my liver. A dye is presented into the arteries and scans are taken to map out the arteries and see which ones reach the tumor. Then non-radioactive beads are inserted into the arteries in a practice run of what will happen with the Theraspheres. The reason for this practice run is that if these beads do not stop their movement at the liver and continue on farther up the arteries, they will enter my lungs and adding radiation to the lungs can cause some very serious problems. According to one doctor I spoke with, the amount of allowable "shunting into the lungs" (passage of beads into the lungs) is 20%.

Hopefully all goes well during the angiogram and then an order is placed for the Theraspheres. These are made to order and delivered within about two weeks. At that two week point, I am brought back in for a repeat of the angiogram procedure, with the real beads this time. The radiation should attack the tumor for a period of about two weeks and then sometime after I would return for a scan to see what effect, if any, the radiation had on the tumor.

This method of treatment seems to be one of the least toxic/smallest amount of side effects and does not preclude any other treatment options further down the line.

Interesting enough, there is another brand name microsphere that is more widely available: SIRspheres. These beads are slightly larger and have a different medical dose of Yttrium-90. SIRspheres are approved for use against cholangiocarcinoma while Theraspheres are only in clinical trial state (though they have been approved for hepatocellular carcinoma - another form of liver cancer). In order to receive Theraspheres, I have to be approved for a clinical trial at one of the five locations that offer them: Mayo Clinic in Rochester MN; Johns Hopkins in Baltimore MD; Northwestern Memorial in Chicago IL; Albany Medical Center in Albany NY; and Wisconsin Medical College in Milwaukee WI. I would bet money in less than five years Theraspheres will be approved for cholangiocarcinoma treatment and will be available more widely as SIRspheres are currently. If I decide to follow up Theraspheres with SIRspheres (which is a possibility) I could go down the road to Robert Wood Johnson Hospital in New Brunswick, NJ.

My hope at the moment is that these radioembolization treatments will be able to shrink my main tumor to a reasonable size for resection (surgical removal) and I can deal with the other "spots" of cancer through my own immune system and dietary changes and supplements. I'm eager to get cracking. 

Update Jan 9th

Johns Hopkins meeting scheduled for next Tuesday.

Mount Sinai was not very exciting. The only thing learned is that they only do SIRspheres for cholangiocarcinoma. Theraspheres are for hepatocellular carcinoma - except in the clinical trial cases - which is what Johns Hopkins is up to...

Had an interesting phone call with Cancer Treatment Center of America (located in, among other places, Philadelphia). Talked about "treating the whole person", working together with naturopathic doctors and nutritionists. Everything sounds good. The difference between CTCA and other hospitals is that most other hospitals are connected to learning institutions or universities allowing them to apply for tax exempt status. CTCA is not. So it costs more but they don't have to follow such rigid guidelines as the others as far as treatment. Will be an interesting decision to make.  

Update January 5th, 2009

Not too much to report over the past week - been making alot of phone calls trying to get meetings set up. Tomorrow, I'll head up to Mount Sinai on the Upper East Side of New York City to talk with two doctors who have experience using Theraspheres to treat cancer. What is unclear is how much experience they have using the Theraspheres to treat cholangiocarcinoma. That will be the primary question that needs to be answered.

I received my clinical paperwork and PET and CT scan disks from Mayo Clinic. This means I should have less obstacles to making appointments with other institutes that require them. This has slowed arrangements with Johns Hopkins. Hopefully I can meet with them by the end of the week or early next week at the latest.

I am also arranging a meeting with an oncologist that works with Robert Wood Johnson Hospital in New Brunswick, NJ. Not sure who, exactly, that will be as of yet - but that oncologist will serve as my "manager" - giving me directions, setting up treatments, and hopefully looking over my scans.

I'm actually not taking much medication right now. Besides Lialda for my Ulcerative Colitis, the only other prescription I have is for Ultram ER which is a pain medication to help with my slight abdominal pain. I am, however, taking a ton of over-the-counter supplements. These include:

• A daily multivitamin (for general nutritional deficiency - in case I'm missing things in my diet)
• Fish oil (promotes healthy bones and joints)
• Vitamin D (because someone told me to)
• Milk Thistle Seed (helps cleanse the liver)
• Echinacea (for my immune system)
• Senna (for constipation - caused by the pain meds)

I'm also contemplating adding Beet root and mushroom extracts as they have been given praise from people on cholangiocarcinoma.org.