Finally, a day where I have a little motivation and some positive spirit. This makes for a good day to update my blog. I didn’t want to update with a darkness in my writing, although that has been the feeling lately.
And sorry, its another long one.

I had to read my last post to see where I left things off…

Because of the CT scan results, I did proceed with chemotherapy on September 24th. I did 3 sessions of hyperthermia with that round as well. The hyperthermia is pretty straightforward as a patient. Lie on a water bed with a large water bath probe positioned on your abdomen. Current runs through your body into the water bed for about an hour. It apparently heats the tumour up to about 46 degrees. The idea is to enhance the uptake of the chemo drugs and create apoptosis (cell death) in the cancer cell. They don’t like heat.

The following week, after that Sept 24th round, I picked up a chest cold followed by a sore throat that lasted a few weeks. Lucky me.
And that same week I was feeling sick I did go for my PET scan (Oct.3rd). Well, as we always hope for good news, it was not to be. PET scan not only confirmed the CT scan, it also discovered a new lesion and that all original lesions are active again. Insert F word here…

Now what?
We had been bouncing back and forth about which direction to go with chemo. Keep going with current cocktail or switch to new. The idea of staying on original chemo was that I was doing it with hyperthermia which could make it more effective. Also, it still may have been slowing the cancer down to some degree. This would then prevent having to switch to my last line of defense. It had been 2 weeks since my last chemo, but ultimately decided to take another week off and switch to this last drug called Panitumumab. But I waffled, back and forth all that week and what was the right decision. I then decided to stay on current chemo for another 4 rounds, re-scan and re-assess. I also decided to take another week off to really let my body heal and get ready for 4 solid rounds with hyperthermia. I didn’t want to have to delay chemo because of my enzymes again. That, anyway, was my plan.

After discussing this plan with my Oncologist (which he actually brought up first), it was decided we had to switch to Panitumumab. My liver enzymes were too high for traditional chemo. With Panitumumab, it is not called a chemotherapy but a targeted agent and can be administered regardless of liver function. It is called an EGFR inhibitor (Epidermal Growth Factor Receptor). It is expressed in many normal epithelial tissues (Skin/Hair) and also in 60-80% of colorectal cancers. Why? No idea. This drug inhibits the EFGR pathway thus stopping the cancer from spreading and induces apoptosis (cell death).

I started this drug yesterday (Oct.22). As with any of these drugs, there are side effects. The AWESOME side of this drug – no nausea, no major fatigue. In fact, I had this yesterday and this is the best I have felt it a while – go figure. So being on this gives my insides a much needed break. I actually slept right through the night for the first time in weeks (Usually up due to pain or nausea). But the downside is the heavy rash it comes with. As I mentioned it is an “Epidermal” Growth factor inhibitor so it greatly affects the skin. It usually starts about 5/6 days after infusion and lasts the entire time while you are on the drug. Everyone reacts differently and from what I understand it creates acne from the head all through the upper torso. So I may look a little different if and when you see me…
I no longer have to take anti-nausea pills. All I am on now is an antibiotic called doxycycline which is for acne sufferers and a hydrocortisone cream. Not sure if anyone has ever been on doxycycline but so far it has sucked. I puked 45min after taking it the first time yesterday. We called the pharmacy and they suggested opening the capsule and putting the powder in apple sauce. I tried it last night and again this morning. This trick seemed to work – slight nausea but no puking.

That is the process for the latest in “what’s next”.
As far as my health, it has not been well. Even though it has been 4 weeks since my last chemo, I never seem to re-bound. The pain has been ever present and random days would just feel like I had chemo that day. I could not seem to get relief or any comfort. This, coupled with all the negative scan reports really put my head into a spin. But the worse news may have come this past Tuesday just before yesterday’s chemo. I had my blood done (as I have to do before every chemo round) and because of my high enzymes from the last blood work I was fully expecting them to come down. They did not, in fact they went up. The enzymes are a measure of my liver function. And being that I only had one round of chemo in the past 8 weeks, this was very alarming. In the past, my enzymes have crept up, but always come down with an extra week off chemo. Here are a few numbers – ALT (normal 1-60) Currently – 570. Alk Phos (normal 30-130) Currently – 980. Then we get into my Bilirubin. (Likely not accurate) -This is what goes through the liver and into your colon, urine and bile. It is what makes your poop brown, bile and urine yellow as well as bruises. Yep I said POOP!
My numbers have always fluctuated but always within normal (0-24 is normal). It has been 6, 3, 6, 8. The last few blood tests have been around 6-8. But the latest jumped to 15. Still normal, but why the sudden jump? And being that I am getting further and further from “liver destroying chemo:, you would think my liver numbers would have gone down. So what does this mean? Likely it is my disease starting to take out my liver. My counts can go higher, but eventually the liver will no longer be able to filter my blood.

So, yes I have progressive disease, but the fact that my liver appears to be functioning poorly has made things more “real”. There may be other factors at work (I really hope so!) that is causing this, but it is a wait and see. This new drug may shrink the tumours and allow the liver to heal a little. It may also be gallstones or just a revolt from the 20 rounds of toxicity I have had this past year.

In any case, it has us pretty frightened and the tears are not uncommon. It just seems closer now. Its kind of like I have been swirling down a funnel this past year and half.

But I will leave this write up with something my daughter said to me a few days ago….

She was in bed and I was lying with her feeling pretty sad and in a bad head space. She was complaining about saliva in her mouth…I don’t know, they’re kids. But I said I would get the flashlight and have a look. Had a quick look with the flashlight – surprisingly there was nothing there. 🙂
But as I laid back down I was groaning a bit from the pain. She asked me what was wrong and I just told her I was sore. Without missing a beat and in an almost adult voice she responds with “Well, just stop thinking about it”.
It was such a profound statement coming from my 5 year old. At that moment, she knew more than me. It was something I remember my dad saying to me as a kid, which is where she likely picked it up from. Thanks Papa!
Those words came across so powerful to me at that moment. “Just stop thinking about it”. It felt like it wasn’t just my daughter in that voice but everyone that has supported me. It made me smile and cry at the same time and was the best thing I could hear. I needed that more than anyone knew. Love you Audrey!

Anyway, let’s hope for some great success with Panitumumab and see these enzymes and lesions go down. Oh, forgot to mention that studies have shown that the greater the rash the more successful Panitumumab is. Has anyone ever wished for explosive acne before??

He called the shit poop!

Dan

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

Let’s get right to the point. It’s POSITIVE news!

I haven’t seen the report, only talked with my Oncologist about it. The scan showed “Stable Disease”. Nothing new and nothing grew. Obviously, everyone wants to see a reduction in their tumor size, so that really would have been the only better scenario. I have attached an article that talks about stable disease – click on the link and have a read as it explains stable disease .

My tumors are still visible in my liver, but they don’t know exactly what is happening within them. My Oncologist said that tumors can still show, but are completely void of any living cancer cells. Its just scar tissue remaining. So, we still push on with my current chemo unless we see disease progression. There were a couple of other things on the scan, but there wasn’t too much concern about them. I have some fluid build up around my bowels and there is another spot where they see scarring – in both scenarios they don’t know what it is, but they elude that it could be disease related. The other small concern was that my CEA (tumor marker) has gone up slightly. I discussed this before about not being an accurate tool and for some people, like me, it isn’t much of an indicator at all. When they discovered my lesions in October my CEA # was 2.3. However, on my March scan, which showed tumor shrinkage, my CEA went up to 4.1. Now on this last scan my CEA was 5.2. A little weird, but there are so many things that can affect your CEA its tough to know what is causing it to rise. One thing I found is that your CEA can go up as tumors die. Yep, sounds good to me! Also, the average person has a CEA between 2 and 5. When I read cancer forums, people report having CEA levels around 6000! So, I am not too concerned about this or the two mystery findings.

Right now, I am in the same position I was back in March and maybe even better if more cancer cell death happened within the tumors. More time – that’s what I was given today – and I WILL TAKE IT!!

Here is a picture of two of my biggest fans. They cheer me on daily and live first hand all the ups and downs we go through. I cannot express how incredible Renee is to be able to look after me (its difficult) and Audrey, manage the house and daily routine, work her event planning job and to still go through all the emotions I do as we ride the worst rollercoaster ever created. She doesn’t get a lot of down time and relaxing is something she rarely “fits in”. I love you both and for the first time in over a year, my wife and I are spending 5 days together in the Okanagan to celebrate my 40th!

I don’t know why I am so bad a updating the blog. I like doing it, so I am not sure what my problem is….

Phoenix was great. I attached a few pictures at the bottom. We had a great place to stay so lots of time spent in the pool. We also made it to a baseball game, golfed, mini-golfed and had a nice walk through the Desert Botanical Garden (http://www.dbg.org). The garden had a really amazing blown glass exhibition from artist Dale Chihuly.

For the most part Phoenix was pretty relaxing but I do like fun distractions. I have been able to relax a little more lately, but I still find I need to be engaged to take my mind off the pain and dark thoughts.

As far as health, I have been feeling quite good. Weight has been pretty steady around 150-153. I had a chemo round the day after we got back and I have another session on Wednesday this week. I met with the Radio-Oncologist last week about the stereotactic body radiation. Unfortunately, I am still not a candidate for this. I have too many lesions in my liver for this to be successful. Even with this more precise radiation it still takes 3 times the area you are trying to destroy. So basically for a 1cm spherical lesion he will destroy a 3cm spherical area. So to go after 10 lesions it will destroy too much of my healthy liver tissue. If I was to get to a point where I only had 1 or 2 lesions then it is possible. But that is pretty much the answer to any local (liver directed) treatments I have looked into.

They said they could radiate 1 or 2 if they were causing pain, but this is only considered palliative. I am definitely not there yet and I told him I hope I never see him again. (Unless I only have 1 or 2 lesions left of course…) I wasn’t overly discouraged – I don’t think I was really expecting it to be an answer. But it would have been nice to have more options…

I also started some anti-depressants the beginning of April. I went on a drug called Wellbutrin. Doc told me it would take about 3 weeks to start noticing any effects. Well, within a week I started to notice my irritability was a little more prominent. Then about 4 days into our Phoenix trip I started to get some anxiety and panic attacks and for no reason. Usually, if my headspace is muddled it is because I am thinking about something related to my cancer. This time, these attacks came out of the blue. And, I didn’t think about it at first but these attacks started around the 3 week mark. Coincidence?

I also slept less. This was an active anti-depressant, which is what I need, but it affected my sleeping too much. I would be wide awake at 5:30am and trying to get to bed was also a challenge. But what really freaked me out was the flight back to Calgary. About an hour into the flight I started to find it difficult to breath. Asthmatics say it feels like breathing through a straw. This was exactly the same for me. It was like I had to force the air in and then out. So being on a plane and feeling like this, I started to panic. I finally took an Ativan which helped with the anxiety, but it didn’t help the breathing. It lasted the rest of the night and by the next morning I was fine. So I looked up Wellbutrin side effects and some of the main ones were – anxiety/panic attacks, difficulty breathing and sleep disorders. Then I searched Chemotherapy with Wellbutrin and 5 drugs came up as potentials to enhance the side effects of Wellbutrin. Guess what one of the drugs were? Irinotecan – one of the main ones they are giving me right now. So with the side effects and my new found info, I stopped taking them. I wasn’t on full dose and Wellbutrin is a drug you can stop cold turkey. 

I met with my psychiatrist later that week and told him I was going to hold off on the daily anti-depressants for now. I don’t get down every day (or much at all to be honest) and if I do get a little anxious he gave me a prescription for Ativan. So we will see how this goes for now. If things change we can always try a different drug. Plus I really hate taking any drugs and I am fully loaded with this Chemo crap. 

Anyway, daily activities are starting to creep back in too. It feels good to care about something again. Still have many moments of “this f’n sucks” but doing some projects and doing a little work feels good. I am still nervous that things could change quickly though. 

My mom and sister are in Mexico this week for my cousin Kayla’s wedding. Would have liked to have gone but with Chemo schedule and a small fear of the Mexican health system it wasn’t to be. Creating memories with family and friends is very important to me now. Would have liked to create those memories with my extended family but I am happy my mom and sister are there. All the best to the happy couple and I can’t wait to see some pictures.

Off to bed now, meeting my Oncologist in the morning for the usual pre-chemo follow up!