Had my CT scan Thursday morning. Got the results Friday afternoon. There was a lot of pacing happening between that period.

Well results are not what we hoped, but they could be worse. Way worse. You go into it hoping for the best, but preparing for the worst. Not to mention our last few CT scans have been pretty devastating, so I may have been “over” prepared for the worst…

Here are the positives. 1) No new lesions. Yes! 2) The largest legion in the liver which measured something like 4.8,4.6,3.9 shrank to 3.9,2.8,1.9. – not exact numbers but Yes!

Here are the negatives. 1) The other 9 lesions showed small growth between 2-7mm. Bummer. 2) Lymphnodes remained relatively unchanged to slightly larger. Bummer.

So some positives and some negatives. But when I go into the scan wondering if it has spread to my lungs, bladder, bones, pancreas etc.., this seems like a win. We saw how quickly and aggressively it moved over 2-1/2 months, so wondering what happened in 4 months was definitely tough. With these results, not much has changed since my scan 4 months ago. So with that in mind, I feel like my time has been extended a little longer.

From the Oncologist side, their definition is that my cancer was resistant to this treatment. Which is the sucky part. You go through all those beatdowns to find out it wasn’t affecting most of the lesions. As it was explained, cancer cells have different clones. So some masses will regress and others won’t be affected. Its amazing after being through 4 rounds of chemo though that it didn’t do anything to those cells…

What happens now? I do have a meeting with a surgeon in Edmonton on Tuesday, but with these results, it is unlikely we would look at any local treatments. The disease has to show regression or stability in most cases. Likely scenario is I will start the second line of defense for systemic (full body) treatment. This will be a combo of two drugs – Irinotecan and Bevacizumab. We’ll start this either the first or second week of February.

So, not a celebration today, but my disease also didn’t really get any worse. I already dealt with finding out I had 10 lesions and lymphnode involvement back in October. Comparatively, today was a walk in the park.

It feels soooo good to come out of a round of chemo. Especially knowing you have two full weeks of feeling good before the next whallup.

I did have round 4 last week. The extra week off was nice, but went quick. I was in for blood again on Monday the 13th, then chemo the 15th. I struggled with my water only fast this time. I was weak, tired and was also suffering from diarrhea. I wasn’t sure if the diarrhea was chemo related or just a stomach bug, but I carried it into chemo with me. This was not good. It caused some pretty bad cramping (the pass out kind of variety) and eating was a challenge. It can be a very serious side effect, but I was able to manage through it without having to call in the “medical system”. …if the quotes left you with an impression of frustration – good. I have been irritated with the lack of communication from my Oncologist these days. Back to positive – thanks Jason for sticking through on the fast with me. Definitely a big help!

But yes, the week delay brought my liver enzymes down enough. Actually quite a bit. A very positive sign that it was due to the chemo and not the cancer per se.
The two they were concerned about were my ALT and AST. Before I started chemo my ALT numbers went as follows – 25, 114, 235, 393(delay), 122(current). Normal is 1-60. So I am still high, but it came down a lot. My AST numbers are 19, 53, 101, 181(delay), 31(current). Normal for AST is 8-40. So this also came down significantly and the lowest I have been since before first round!
I was also asked about my GGT (Gamma Glutamyl Transferase http://www.ncbi.nlm.nih.gov/pubmed/11563810) which went 37, 86, no reading, 224(delay), 198(current). They didn’t seem as concerned for me on this, but still good to see it came down after the delay. The rest of my bloodwork looked really good as well. WBC (white blood cell) was at the highest its been (good thing) since before chemo (mine 7.1 – normal is 4-11). Platelets too at 294 – normal is 150-400.

Because of the delay we also had to delay the CT scan. It was supposed to be Monday, but now switched to Thursday. I lot of emotion surrounding this, but I am okay, it hasn’t been distracting. Yet.

The next blog will be some news. Till then, its a bit like looking over the edge of cliff and wondering what would happen if you fell. Its also looking over that same ledge and feeling that quick panicked rush, then stepping back and breathing a sigh of relief that was not your reality.

To stepping back…
Dan

Supposed to be getting infused with my 4th round today. Unfortunately my liver enzymes were too high, so we have delayed it a week to see if they will come down. They were elevated before round 3 but not enough to delay it last time. This time – too high.

So, it isn’t ideal. However, it does give me another week of feeling relatively good.
And there is some optimism coming out of this scenario as well.

Before every chemo round I have to get blood taken. This is usually the Monday, two days before Chemo. Then I see my Oncologist Tuesday for results and to see how I am doing. Unless I request otherwise, this is the only time I see my Oncologist(so every 3 weeks). During the appointment with the Doc, we discuss last round and side effects as well as my results from my blood. I was nervous going into this visit because it was also my 3 month Tumor Marker test – which is the CEA test(carcinoembryonic antigen). It isn’t a definitive answer on what my cancer is doing, but you certainly don’t want to see it high. On my last scan with multiple lymphnode involvement and 10 liver lesions my CEA was only 2.2. Which is normal and likely lower than/equal to people without cancer. Well good news – it hasn’t changed, it measured at 2.3. Back in April/May when I had my first lesion removed my CEA was at 13.6 beginning of May and 22.4 just before my surgery June 12th. So all things considered, this CEA has shown to go up in presence of disease. So my hope is that my disease has not progressed. And even more so to have it shrink!

Second piece of optimism is that when the doctor did a physical check he said he could not feel my liver. Which was great to hear because of the pain I have in the front and back abdomen. It feels like my liver is swollen and pushing on nerves and ribs. And it well may be, but if he can’t feel it then hopefully it isn’t too bad.

So now we have this elevated liver enzyme. This enzyme is a measure of how my liver is functioning. With it being elevated that high, it is cause for concern. But it could be attributed to either the Chemo or the Cancer. One of the drugs I take (raltitrexed) is known to cause liver failure and elevate these counts. So, the hope is that with this extra week off, these counts come down. If they do, we can hopefully take some relief in knowing it was likely the chemo and not the disease causing this.

This week I also hoping that the abdominal pain decreases with this extra rest. It would certainly lift my spirits. And even though my enzymes are high, I am encouraged that it may not be disease progression. We will find that out on my next CT scan. Currently scheduled for Jan 20th but with Chemo tentatively scheduled next Wednesday, I may have to delay scan for a few days. If my counts do not come down then no chemo next week and we will just wait for the CT scan to see what is going on in there.

Some other things I have been experiencing. I have numbness in my fingers when I tap something. Feels like pins and needles. This is a common side effect from the Oxaliplatin drug. Mouth sores are another common one, but I have avoided it so far. I did get one in the nose. Its like a canker sore. Again Doctor was not concerned. And then there are aches and pains which likely is just normal wear and tear, but when you have an illness, you are always on high alert wondering if that’s the disease or not.

Overall, my physical health is good when I am not constantly reminded of my situation due to the pain. My heart rate is great, my oxygen level at rest has been 100% the last two Oncology visits. Which is rare for anybody. Where I get into trouble is the mental side. This effects everything and leads to depression. I lack motivation and I feel defeated. Ambivalence prevails and I really couldn’t care about anything. Writing my blog, responding to friends and family, being productive and just daily life can take a hike when I am down. Which has been a lot these past weeks.

But I love optimism and I need hope and my doctor’s appointment left me with that. This improves my mood by 300%.

So here is to a good week off. Both physically and mentally. And to a lower enzyme count next week!

Dan