As the title indicates, we didn’t get any bad news from the PET scan. I am reluctant to use the word “good news’, but we definitely got the best news we have had since my liver resection!

I don’t have the report so my science might be a little off in describing what is going on. So lets get to it!

There is no cancer at my initial colon resection site!!! In fact they couldn’t see anything there, let alone a tumour.

All liver lesions and lymphnodes have either shown a complete or partial metabolic response. Meaning that there is less to no cancer activity from my lesions/lymphnodes in comparing it to my PET scan back in October. The doctor told me that for some spots they can still see where the tumour is, but there is no activity there. This could either mean the tumour is dormant or dead. They don’t actually know. (The metabolic activity comes from the tumours taking up the radioactive sugar coursing through my blood. That is how the PET scan works)

So outside of hearing “your cancer free” I don’t think there could be more positive news than what we just got. I will tell you it feels really good to take a deep breath, even if this is just temporary. Going to celebrate tonight with some Chinese food and a beer!

As far my physical well being, I did decide to take an extra week off chemo. I have been pretty tired and burnt out and I just feel like my body needs a little extra rest. I have multiple sores in my nose that bleed. Not dripping or anything, but there is always blood when I blow it. Its not serious as this is a side effect of the Bevacizumab, but still a little unsettling. My hand/feet tingling and numbness has also been a little more intense and my intestines have just all over felt off and tender. On the pain side, this has come down a lot. It is no where near what it has been. During the day I can barely notice it (if I am engaged in something) and in the evening it tends to only be a little more prominent. But it is nice to know that most of it is caused by chemo and not cancer growth. Why do I think the pain is less? Two reasons – one, this chemo isn’t as toxic as the last one and so I think I have healed a little more from that. And second, the tumours have all shrunk and putting less pressure on my liver capsule and surrounding nerves. (the liver itself has no nerves)

So, next chemo is scheduled for April 24th. I have 2 weeks off before that and not only do I get to feel physically good, but now mentally as well. Easily the most relaxed I have been since that shitty scan back in October. Decided today to fly to Phoenix to meet Renee’s mom and dad and I am not going to think about cancer for 9 days. Boo.Yah.

On another note, there is now some more talk about stereotactic body radiation therapy. This is a newer technology that delivers more precise radiation to tumours. In the past, radiation to the liver has been challenging because the standard radiation would damage too much surrounding tissue. The standard radiation wasn’t as intense of a beam as stereotactic, so not as effective either. Anyway, we will cross that bridge after I speak with the radio oncologist and update everyone more then. But this could be a very exciting door that could open for me. You can read more about it with this link. Stereotactic Body Radiation Therapy

Sending out a cheers to everyone on this special day. We needed this.

Dan

Well, as it is every 2-3 months, the anxiety and stress elevates as we wonder what fate my body has in store.

So here we go!

Like last time, it is a bit of a mixed bag but definitely more on the good news side!  All liver lesions and lymphnodes have shrunk. I don’t have the report and they didn’t tell me by how much, but there was one measurement on my chest lymphnode that went from 1cm to 7mm. So I am extrapolating that we saw a 30% reduction in disease across the board. So all this is SUPER positive. I wish it stopped here though.

The downside is there appears to be some sort of fluid build up/mass at my first colorectal surgery site in my pelvis. It measures 4x4x10 cm, but the kicker is that they don’t actually know what it is. On the report it says suspicious for disease and call it a local recurrence. However, two radiologists and a couple of oncologists have looked at it and actually don’t know what it is. I have no symptoms from it so we are going to push forward with chemo next week and I will go for a PET scan to see what this is. It is strange that this did not appear on my last scan and it is that size in two months. So I am going with this is just a side effect of chemotherapy and will clear up on its own. If it is disease, at least I won’t have to worry about it metastasizing to my liver! 🙂

Overall, I am pretty stoked about the news. I did ask my oncologist about chemo and when the disease becomes resistant to a particular drug. He said on average chemo works for about 8 months before we need to switch it up or try something different. So as long as this colon mass doesn’t come to light, I feel I have gotten so more time on this planet.  We did not really discuss options on this new mass as until we know, we aren’t going to worry about it. (I will still worry and wonder, but to a lesser degree.)

Spending a few days in Vancouver with my mom and dad, Renee and Audrey. Wanted some positive distraction while we waited for the news. Going to take the boat across to Granville Island today and then to the aquarium tomorrow. Feels good to not get devastating news for once and of course be on a little holiday. I may even have a beer this weekend to celebrate this small and hopefully not brief victory!

Dan

Writing this blog is tougher than I thought.
My mood is so up and down. When its down, I don’t feel like doing anything and when I feel mentally strong, I want to get as far as I can from cancer. Hence why my blog suffered these past few weeks.

So, now where do I begin…

Its been almost two months since I updated my health status. There isn’t too much change. I physically feel better than I did say 3 months ago. My liver enzymes are all in normal range now and my bloodwork is pristine. My CEA (carcinoembryonic antigen) did go up slightly since January. 2.3 in Jan. to 4.6 two weeks ago to 4.2 yesterday. As I mentioned in previous blogs this can be used as a tumour marker. However, it is not a definitive test. For me, my oncologist says it is not something we can use. Normal range is 0-5 and even with my cancer it is still showing normal range. Does the slight elevation mean the cancer is growing? Could be, but it also could just be nothing. Many people with less cancer than me have a CEA level in the hundreds.

My new chemo isn’t as hard on me as the last one, although it is every 2 weeks. So, just when I start feeling better, I go in again. When I went every three weeks it was almost like I forgot how shitty it was. This two week stuff just seems to roll over on itself and the past two months have gone by quickly. If anyone can stop time, please let me know.

I start my 4th round tomorrow and then I have another scan Monday the 24th. This chemo actually makes me sick during infusion and then I am pretty bad the rest of the day and into day 2. After day 3 I can start moving around more. Nausea comes in waves so it allows me to be a little more mobile during days 3-6. The diarrhoea can be severe on this drug, but I can control it with Imodium.

The downside – I have started getting some newer, more prominent pain around my liver. The liver is pushing on some nerves on my lower front and back rib cage. I have never had a problem sleeping, but this has started to affect that. Sleeping on my right side has been out for while, but now sleeping on my left side and back is causing some painful pressure points. This can wake me and in the morning I am quite sore. This is the crappiest part, as the pain really drives my mood. I use heating pads all the time and unfortunately I have started to take some morphine (I don’t like taking meds…). Anyway, outside the pain and some numbness/tingling in my hands, I feel pretty good which just makes me angry at all this bullshit.

As I said, my mood is up and down. A lot of down and the up is more of a neutral feeling. I see my psychologist at Tom Baker frequently and I enjoy talking with her. I did see a psychiatrist last week about possibly taking medication. After his clinical assessment he felt I could benefit from an anti-depressant/anxiety pill. The drug he is offering is called Cymbalta and it also has some pain killer effects too. I don’t really want to take them as it is just another “thing” I have to do as a result of my disease. But while I am still physically feeling well, perhaps this could help the mental side. If it can bring back some joy and help keep me out of the dark places then I guess bring it on.

Anyway, as I stated my 4th round of this chemo is Wednesday (tomorrow) and then a scan Monday. With the scan comes 4 scenarios – Disease regression, disease stabilization, disease progression but still limited to liver/lymph nodes and then disease progression with new lesions in other areas.
So, once again really hoping for scenario 1. I would also be elated with scenario 2 as well.
Depending on what the results show, will dictate which treatment direction we go. I still have some options which is great, but I do need to respond to them to help extend my time.

Just before round 3, I went through all the canadian clinical trials online and brought in all the ones I thought would pertain to me.
There are a couple of trials in Calgary that I could qualify for but they are still systemic (whole body) chemotherapy. I am really pushing to get a more localized aggressive treatment on the liver. But with the lymph node involvement and multiple liver lesions I tend to get the door shut on me. There are a couple of trials in Toronto for these treatments and doctors there have heard my case and are willing to look at my scans. So, we are encouraged by this.
I actually found out that my Oncologist did some training out of the Princess Margaret in Toronto. He was in the clinical trial department so he knows a lot of the head researchers.

Renee and I manage, but its tough. My disease is a full time job and has really sapped our joy. We’ve lost a lot of our drive and motivation. Meal times and life’s routine seem like such a chore. I also forget how hard it must be for Renee to see me at certain times. She just wants to take it away for me. I do try and be strong because this cancer is not just my burden and my mood doesn’t just affect me. Its hard on everyone else – especially those at home.

I do have anxiety with chemo now and I am not looking forward to tomorrow. However, if I knew chemo was working, this would change my attitude towards it. Yes, I am little bummed today, but I am not down. I try and keep the positive alive, but the pessimist in me loves to come to the party. I am rarely able to stop thinking about my situation and if I do its brief. And if I have forgotten, reality quickly comes crashing back and its like I have cancer all over again. Its weird and I miss a normal life.

As we all hope for a good scan, I will update results next week.
We are going to leave town right after the scan though. News is news no matter where you are and the distraction will hopefully be good for everyone.

Sending my thoughts to all of you first ;),
Dan