Rollercoaster

It's been a crazy these past few weeks. I'm going to spare some of the details in some cases. I figure that I'm using this blog to keep a record of this whole exciting experience, I can't just focus on the respective puppy dog and fluffy kitty moments.

About two-three weeks ago my stomach started hurting. Eventually I went into the doctor and had an X-ray. She said I needed to, um, clean myself out, which I did, but the pain was consistent. I got in touch with the doctor and she said to go into the hospital, where they'd provide me some professional services in the cleaning department. After a night's stay, nothing really major happened. I then went to radiology, where they took another X-ray and determined that my guttiwuts were all clear, so I then checked out of the hospital and ran over to get chemo. My oncologist didn't want to proceed until we did a CT scan. SO, then I went over to the imaging center, and promptly went through the device. After waiting a while back over at the cancer center, the results finally came back from the CT: all clear. I started chemo, and finally got out out later in the evening.

The next day I got in touch with the SBRT (radiation) team at Stanford in order to follow up with them regarding the symptoms following the radiation treatment. I remember them mentioning that there might be some discomfort of sorts. I've yet to hear back from them with a more definitive answer. The nurse has relayed the issue to the doctor.

In other news, we got the results back from CellPath, the place that tested my blood and the cancerous cells within it against chemo drugs. The results came back that my cancer is the most sensitive to FOLFOX, which is FOLFIRINOX minus one drug, irinotecan. My wife and I are headed to Johns Hopkins Hospital next week to talk to another oncologist there, who also works with the CellPath team. The JHH folks have also reviewed all my most recent scans from Stanford, and the doctors who have been informed of my case are the same ones who are on their pancreatic tumor board. I'm hoping to hear some ideas on treatment, as well as ask some questions (i.e. why would the absence of one drug cause greater sensitivity with the remaining ones?), and hopefully get some new ideas and options.

Additionally, for some reason I have The Who's "Teenage Wasteland" playing in my head except those two lyrics have been replaced with "chemo patient". Try it. It's quite catchy. I should warn you, the video below won't work on mobiles, so check it on a desktop.

 

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Second opinions and a dog

It's been a little tough these past days. This most recent week was my week off between chemo cycles, which is a bit of a double edged sword because I appreciate the break from the drugs, but then I also feel like I'm not doing anything to kill cancer. Even though I wasn't getting these shots of Neupogen to help boost my white blood cell counts (I thought they were making me feel like crap) while I did the last week, I didn't feel all that great at all.

Even though I have this new plan, I'm still not feeling all that great about the situation because realistically, it's not looking like surgery is an option. My low tumor markers are a wonderful sign that the cancer is stabilizing, and there are no metastases, however I'm reticent to believe that this little asshole is going to pull back from the blood vessels as a result of the chemotherapy. I know I should be more optimistic, because the situation could be much worse, but it still isn't sitting well with me. Every now and then I have these bouts of frustration because even though I'm working with all these specialists, I feel like they don't know shit about what's really happening with me. There are these indicators (tumor markers, scans, etc) that they use to help guide the decision making process, but I feel like I'm at a point where there's no clear curative path, and it's really hard to process sometimes because of who I am.

I did get my blood off to CellPath, and I also sent copies of all my Stanford CT/PET scans/studies to some of the staff I'd met with previously at UCSF to get a second opinion, as well as handing off the same materials to folks at Johns Hopkins. In fact, the team at CellPath works pretty closely with oncologists at Johns Hopkins, and suggested that I come out for a one day evaluation, which would likely consist of meeting with the medical oncologists, and possibly radiologists. Next week should consist of following up with the different folks at UCSF and Johns Hopkins, and I'm welcoming the additional perspectives.

I start the fourth of five cycles of chemo this week. After the fifth cycle I'll likely do another scan to determine the activity and size of the tumor, and I'm hoping that some of the "haziness" that was reported in the last study can be attributed to inflammation from the radiation, and will no longer be present. Instead, I'd like to see some shrinkage with the tumor pulled back from my precious vascular tissues.

Oh yeah, as if we didn't have enough going on, we adopted a dog from the Berkeley East Bay Humane Society. His name is Buster, he's 13 weeks old, and is an American Bulldog.

A New Plan

Fortunately, the radiologist at Stanford got back to me the follow day. He'd been on vacation, and returned my call and my oncologist's the day after he got back.

Essentially, the radiologist wasn't expecting to see too much dramatic shrinkage, as there's typically some swelling/inflammation still present this close to the radiation being administered. He doesn't think there's been any progression of the tumor, and both he and my oncologist believe that the disease has stabilized. My oncologist did a tumor marker test (CA-19) and it's now in the normal range. When I first did had the marker taken it was 142. Then it dropped to 97, then 67, then 69, then 40, and now 14.

What does this mean?

For starters, this all suggests that the disease is stable, and that the radiation is working to kill the tumor. There aren't any apparent metastases elsewhere. The radiologist indicated that the radiation will continue to work for a while longer to kill the tumor and its cells. I'm going to continue to do chemotherapy to try and shrink the tumor. My oncologist indicates that we're too soon in the process to immediately start changing drugs and that we should do 2 more cycles, and I believe her. We're going to try not doing these shots that are supposed to counter effect the chemo wiping out my white blood cells (WBCs), since the shots make me feel horrible. We'll do blood work to monitor counts. After these cycles are complete I'll do another PET/CT scan (most likely in February) to determine both activity and size. If there's no change in the tumor, then we'll see about introducing another drug (or drugs).

After the scan I'm hoping that we see minimal activity, no metastases, and shrinkage or melting of the tumor away from the blood vessels. I'm coming to accept that there's a very real possibility that I might not be able to make it to surgery if the tumor doesn't respond to the chemo. I'm hopeful, but I need to be realistic, and I'm not one to bury my head in the sand. I'll need to remain cognizant of the situation, so I can make pragmatic decisions.

I'm going to do the aforementioned test that involves me providing a blood sample, and them testing to see if there are certain chemotherapy agents that cause the tumor cells to have a dramatic reaction (i.e. die). The results of the this test could be instrumental in finding the right drug(s) to use. I'm on Gemzar and Abraxane right now, with Gem being the backbone of PC treatment.

I feel a bit better with this plan. Since I'm tolerating the chemo treatment pretty well, I'm even considering going back to work. I'm not quite sure on the timing, and there are a lot of "ifs" to still be worked out. I'm going to have to spend some time talking with my employers and others to see how to handle. I don't want this option to blow up in my face if I end up needing to take time off again.

Sidenote: this week has been crazy. I had an ERCP to replace the stent in my pancreatic portion of the common bile duct, then chemo, with blood work kicking the week off. I also need to do more blood work on Friday, as this chemo really wipes out my platelets. Since I'm not doing the shots for my WBCs we're also watching those numbers. I might have to go back on them if they get too low. I have the next week off, so all my counts should go back up.

Onward.

Stenty

On my way to Stanford today for a stent replacement. They knock me out, thankfully, because once I woke up while they were shoving the scope down my throat. It was a disturbing experience.

I'm a little irked by the radiation oncology group there, as they need to get in touch with my medical oncologist to discuss the recent scan, as it has implications for my chemo treatment. I kind of feel that now they have my precious data for their research they don't have a vested interest in following up. Before I did the radiation the doctor would call the house and my mobile to explain what was going on, and they chased down the insurance approval. Now I get a quick phone call from a doctor on the team who gives me a heads up that they don't think they can do surgery. I've been trying to track the main radiologist down to get him to call my oncologist, and he seemingly can't be bothered. It's disappointing.

Good news is that I have a clear plan with my chemo. There are still some options with the drugs I can take, so I feel better about that.

Ok. Almost here. Let's stent.

What's next

I'm still reeling from the fact that there was no change in the tumor's involvement with the blood vessels. I'm not quite sure how to feel about this all. I'm angry and frustrated for sure. I don't want to wait 3 months to see what, if anything, has changed. I'm going to see if there are other more aggressive chemotherapies I can try, or at least something that's going to react more significantly with the cancer than what I'm on.

There's apparently a service that screens blood from cancer patients, and uses the samples to compare the cancerous cells with chemotherapy drugs in order to determine if there are some that are more reactive, that is, cause cancer cell death than others. The nature of cancer, especially pancreatic, is that everyone's cancer is different, and some treatments might not work as well as others. This service is a bit costly and isn't covered by insurance, but if this could help determine a more effective chemotherapy treatment and cause the tumor to shrink it'll be worth it. I haven't committed to it yet. I still have to have more conversations with both my medical and radiology oncologists.

The other night my oldest said if he had a wish he'd wish for lots of money and a big house, then quickly followed it up with wishing that I would never be sick again. I was floored because of all the things a 7 year old could think of to wish for, he made an unselfish one for his old man to get better. I'm pissed that my kids have to go through this with me, but happy to have their love and wishes during these tough times.

Scan results

Short version: the results came back and they were less than favorable in the sense that I'm not going to be going to surgery anytime soon. There was little to no change in the tumor's shrinkage back from the blood vessels, and the surgeons don't want to operate. I'm trying to get some more information (read: translation) from the doctors about what the report means, as I don't have a firm grip on the takeaway because I don't have a medical degree. It does sound like there's still some significant encasement of some blood vessels by the tumor. Little bastard.

Needless to say I'm feeling a bit angry and frustrated by this news. The doctors at Stanford want to have another scan in 3 months. 3 fucking months. I'm trying to find out if there's different treatment options available during this time. I'm going crazy with this waiting.

Prelim results

Waiting at chemo for three things: blood work, the chemo itself, and preliminary results from my scan on Monday. I'm anxious to say the least. I hope it's good news. I'm not quite sure how it's going to be articulated in the results. I'm guessing if there is shrinkage of the tumor and better margins around the blood vessels, then that would be described.

Fingers crossed. Toes crossed. Don't cross the streams (for all you Ghostbusters fans).