I was not sure how to write this latest blog. In fact, I have been trying to do it for a week now, but it has been difficult.
I decided that I would just start with the headline first:
My cancer has progressed. I had a scan on September 12th that showed a new lesion on my liver and some nodes in my left lung.
Yep, undoubtedly this sucks and it has been a pretty bummer of a week for our families. Now you see why writing this was tough and it certainly isn’t my best work. 😦

Now…going back the past 8 weeks.

At the end of July I was back into a regular routine of chemo. 1 week on, 1 week off, then do it all again. I went through rounds 17, 18 and 19 during this time.
I mentioned this in a previous blog, but with each passing chemo, the more beat down I become. I have not been “bouncing” back after each round. So my off weeks have not been all that great. Energy has been sapped and my head always feels like its in a cloud. Focusing is tough and my memory is horrible. And the discomfort in my abdomen has been running wild. There isn’t a spot on my abdomen that I can push that isn’t tender.
This all got a little worse through the month of August. I was seriously considering taking a longer break from chemo (More than just an extra week) to let my body heal. My Oncologist was not a fan of this, but understands it is my decision. In the end I decided not to. I was taking an extra week off for Detroit, so I thought this might be enough.
Before my last round (#19 on Aug. 27th)) I had been starting to get headaches. I never get headaches so this was a little worrisome. Also that same week, I woke up to go to the bathroom and I could barely walk. I had this incredible flanking pain on both sides of my hips. I brought both up to my Oncologist that week. He wasn’t too concerned with the flanking pain, but was a little concerned about the headaches. I had a PET scan booked for Sept 30th, but we decided to move the scan date up in light of these new issues and my overall feeling of terribleness. It would only be a CT scan, not a PET, but would also include a CT scan of my head.
As crappy as I felt before round 19, my blood counts were still fine to proceed with chemo. It did help knowing that I had three weeks off after that round with a trip to Detroit mixed in. I should mention that even though my blood was good, one of my liver enzymes were elevated, but not enough to delay chemo. Also, the flanking pain did go away and we figured it was a pinched nerve from sleeping funny. The headaches decreased too.

The chemo “on” weeks have not been too bad. My worse days now are the Sunday/Monday. It kind of goes like this: Wednesday is chemo day and I feel horrible during infusion and for the rest of the night. Thursday and Friday have not been that bad. (I can get out of bed…). Saturday is on the fence and then the Sunday/Monday I am just laid right out. Tuesday used to be my day to get out, but now that has shifted to Wednesday and even then I just don’t feel myself. I push through the rest of the week, but I am tired, uncomfortable and frustrated.
Even Detroit was a struggle. It was still a great time, but I pushed myself way too hard. I don’t regret it as I wanted to have fun and feel normal for a few days. But I certainly paid for it when I got back to Calgary. We got in Thursday night (Sept 11th) and then I had my scan that next morning. As always we are stressed out surrounding an upcoming scan, but that following weekend was brutal physically. The abdominal discomfort was actually painful and all I wanted to do was close my eyes – even if I wasn’t tired.
Based on how I was feeling, I was fulling expecting the scan to be terrible. It was a chemo week and I did go for blood on Monday (15th) and then met with my Oncologist on the Tuesday morning (16th).
That Tuesday was a weird day. It was the first day I have woken up with a little jump in my step. Things felt more settled in my stomach, the headaches had lessened and overall I just felt more like I should. Needless to say, because I was feeling so good, I had a optimistic outlook on the scan results. My oncologist didn’t have the report yet, but we looked at the images. He doesn’t read the images, but can see the obvious stuff. We compared the previous scan to this one and he actually thought my original lesions had shrunk. In any case I was feeling pretty positive after our conversation.
I was also going to delay chemo another two weeks if the scan came back stable or better. Surprisingly my Oncologist was okay with this, but we agreed to wait for the official ct scan report. But then we looked at my blood counts…My liver enzymes were extremely elevated. They were too high too proceed with chemo that week. So for sure I was getting an extra week off. So if the scan was good – two weeks off. If not, we would have to proceed the following week. Well, I left thinking I had two more weeks off and the whole time I may actually feel good!
I was riding a pretty big high and then later in the day I got a call from my Doctor with the crap news. A new lesion was found on my right liver lobe measuring 1cmx2cm. Larger than any of the lesions they had originally found last October. They also found some nodules on my left lung with the largest measuring 4mm. Complete and utter disappointment – from hero to zero in about 2 minutes.
The other flag is that my CEA level has slowly climbed back up. CEA (Carcinoembryonic Antigen) is a protein that we all have, but can be elevated in the presence of certain cancers. It is tumour marker, but by no means accurate. It hasn’t been a real accurate test for me, but back in April it was around 2.5, July it was around 5 – which are both normal limits. However, end of August showed a CEA level of 10. At my initial diagnosis in May 2013 my CEA was 13.6. So, not a very promising result – regardless of its effectiveness.

So, what does this all mean? Well it means my current chemo cocktail is no longer effective. My cancer has grown in spite of this chemo and I will have to move to another treatment. What sucks is that I have been trying hard not to be a cancer statistic. That my prognosis of 1 year without treatment and 2 years with treatment could be beaten. Not saying that it still can’t, but I am moving on to my last standard of care chemo treatment. After this, then it is hopefully finding a trial and then hoping that trial is also effective. Last April, when we got the first positive scan I had asked my Oncologist how long chemo typically lasts for. (That is why for most people chemo is not a cure. The cancer becomes resistant. Similar to insects and pesticides). He told me about 8 months. I am exactly 8 months with this chemo. Hence, I am a stat. I fall into the category of everyone else. Now, I will be on my last line of defense and there is no guarantees this will work. While there is no benefit in looking ahead in my path, it is hard not to. If this new chemo works, then what? I have 8 months on it and that’s it? I hate sounding defeated but it feels like it sometimes. When we started this journey there were lots of options, but as time marches these options are slowly disappearing.

On the positive side, things could have been a lot worse on the scan. My head CT scan came back clear and with the way I had been feeling, I am not sure it would have surprised me that the cancer had significantly progressed. Also, the original lesions have not changed (still stable). And we also have another chemo agent which could be the cancer bomb for me. It may be more effective than anything else so far!
Another bullet in my gun is that I start logo-regional hyperthermia this week. I mentioned before about us considering going to Germany for this. Well, Calgary just got the first unit in Alberta. The idea is to do this the same time as chemo. Studies show it makes the chemo more effective. There is a clinic in Ft. Langley BC, but I would not be able to travel there during my chemo week. And with Germany, they do chemo and hyperthermia at the same time. So, having this in my backyard is a big positive and who knows what could come out of it.

This week (22nd), I have blood again and if my counts have come down I will have chemo on Wednesday. After this round, they are still sending me for a PET scan (Oct.3). They want to confirm extent of new disease as well as to see what is happening with original lesions.

Yeah its the wonderful ups and downs. Was really hoping to go a little longer on this chemo agent and not have to share this news already. Don’t want to be a stat. Two years is just not an acceptable prognosis – I flat out refuse it.

But, everything we do is still all about playing for time. A silver bullet would be nice, but not realistic. There is a reality for me and my family, which is why it is so important to live for today. I am not saying this as some motivational speaker. It is simply to remind myself to not let tomorrow ruin today. Its hard, but I have gotten a lot better at it.

Will update more as info comes available,
Dan