Category: Updates

Thank you for praying! My weekend of IV fluids seems to have fixed my pancreas enzyme levels. I went from levels that were 10X normal on Thursday to normal by Monday morning. It sounds like I will be getting into the trial with a possible start date of next week, however, I am still waiting for an official confirmation.

I am still struggling with appetite but I don’t seem to be losing any more weight. I think it’s been almost 2 weeks now where I have been holding steady in the mid 130’s.

Please keep praying.

Leanne and I eventually made it to Princess Margaret yesterday…on separate trains. (We will have to monitor the frequency of 1pm Blue Jays games in the future as they tend to fill up both parking lots at Aldershot GO station.) The study nurse went through the consent form, asked me a ton of health questions, and proceeded to have her colleagues administer a few more tests. We then raced across the street to Toronto General Hospital for my CT scan.

About an hour later, I received a phone call from the study oncologist while on the train headed home (with my wife this time). She said that my pancreas enzyme levels were very, very high and would likely prevent me from participating in the study. She and my oncologist in Kitchener have no idea why the levels are so high, especially when I am not having the typical related symptoms. To try and reduce the levels of these enzymes, I am having 3 days of IV fluids at home. They used my port which means my arms are free which is really great. I will get a blood test on Monday locally and find out the results on Tuesday. If the levels do not show improvement I will not be part of the study.

Again, please pray for God’s will regarding this study. On the one hand, considering how new and small it is, the side effect risks could be high and unknown. On the other hand, maybe it does have high potential to do some good. God knows what is best for me!

Regardless of the trial, please pray that my pancreas enzyme levels go down. I’ve been told to go to the ER if I start having abdominal pain and vomiting. I haven’t had time to look it up yet but I don’t think there is anything good about pancreatitis.

 

Here is a nice little song from Weird Al in case you want to learn more about pancreases.

 

This morning, Leanne and I are off to Toronto again to have some tests done and paperwork signed for a new Phase 1 trial in which I may be eligible to participate.

This was a bit unexpected. At my last meeting with my oncologist in June, he told me he wants to take me off my current treatment and try something else. He mentioned contacting Princess Margaret Cancer Centre again as one of a few options he would pursue for me. A few days later I was meeting with the trial doctors at Princess Margaret discussing this trial.

The trial involves an immunotherapy drug given via IV once every 3 weeks. That will be a welcome change from my last Phase 1 trial at Princess Margaret and all my other treatments which have been once every 2 weeks. The big catch with this trial is the risk of deadly diarrhea; one person in the trial died from complications related to diarrhea. Apparently some people on the trial have no diarrhea at all, so I am going to be hopeful that I am one of those very blessed individuals. The “deadly diarrhea” did have me pause a bit before jumping ahead but I am getting very close to exhausting my treatment options. And I know I’ll be in good hands at Princess Margaret even if unwelcome side effects occur.

I keep mentioning my lack of appetite. Sadly, that issue is getting worse. I keep having setback after setback. I weigh around 135 lbs now. For context I am 6’1″. I keep thinking I am making progress but after what I think has been a good consistent run of eating, the scale disappoints me. I am really hoping once my last round of chemotherapy has finally left my system I will regain some of my appetite. 

Please pray for us as Leanne and I travel back and forth to Toronto. We take the train so it is at least quite a relaxing journey. Pray for God’s will regarding the trial at Princess Margaret, and that my acceptance in this trial will not be contingent on my weight. As Leanne and I continue struggling to find foods I will eat, pray that I will be able to gain some weight.

 

P.S. Thanks for continuing to pray for us and taking the time to send us encouraging notes now and then. Occasionally Leanne and I hear from people who are having trouble contacting us when replying to the blog email, so here are our direct email addresses:

 

• • theclarks@jtclark.ca (This goes to both of us)
  • john@jtclark.ca
  • leanne@jtclark.ca

Radiation in London is done now and I am back on chemo at Grand River in Kitchener. We won’t really know until my next CT scan if the radiation treatment was successful or not. Thankfully I didn’t experience many side effects, just fatigue and some very minor aches around the radiation target area.

I’m still having some a lot of trouble with my appetite. Basically I have no desire to eat anything. I get hungry but have no desire to eat. I rate foods as tolerable or intolerable. My tolerable list is extremely short and changes constantly. I haven’t enjoyed eating anything in quite awhile now. Leanne and I are working really hard to solve this problem but I am not gaining much weight. We have some medical options we are pursuing as well. I promised my oncologist I will be 150 lbs by our next appointment near the end of June but I am becoming doubtful I will reach that goal as I am in the low 140s now.

I really do miss eating. On our trip to California I was eating kids meals. 

My CEA level is still slowly climbing, which is not surprising since nothing has really changed to affect it.  Hopefully next month’s level will show some signs of decline or stability as that test would include my radiation treatments.

My oncologist prescribed me some pills to help with fatigue and after a bit of experimentation with the dosage I think it is working. 

Prayer Requests

I need to get my weight and appetite under control.

Staying alive longer would be nice.

I am very thankful I was able to go on such a great trip with my mother and family. I had such a good time with the kids, especially my sweet little Magnolia. I couldn’t keep up with Leanne and the older kids but Magnolia and I seemed to have a similar amount of stamina.

My latest CT scan wasn’t too surprising. There were again signs of continued tumour growth in my liver and lungs and it looks like there is a new nodule on my pancreas.

The current chemotherapy may still be helping to slow down the growth so it makes sense to continue on this treatment at least for a few more cycles.

To help combat my biggest liver tumour I will be having 5 days of radiation treatment in London starting May 10. Hopefully this will reduce the size of my biggest liver tumour which may also help my current chemotherapy to be able to attack this tumour better as well.

Prayer requests:

• Please pray that the radiation will help and for Leanne as she takes me to London for each of the treatments.
• My oncologist has given me a new prescription to help with fatigue. Please pray that it works.
• We will be leaving for a vacation with most of the kids this week on May 1. Please pray for our safety and that my health won’t cause any significant challenges or expenses on our trip.

The results of my last CT scan (January) were mixed. There was a slight reduction of growth on my larger tumours but possibly signs of growth on a few smaller tumours.

Since that scan I have had 3 more CEA results. The first one showed yet another fairly significant drop (early February) but my late February result was a little higher followed by my latest CEA result of a few days ago which was also a little higher.

See a chart showing all of my CEA results since my initial diagnosis.

I have yet another CT scan coming up this week that should shed some more light on these results. My oncologist seems to have a lot of ideas of what we can try next but as far as standard treatment goes, there are very few options left and they are not very effective.

This new chemo treatment is definitely making me feel more tired in the days after treatment which is different than what I experienced with my other treatments. The rash is pretty maintainable, it usually leaves my face alone. I miss all my hair.

Lately I have been having trouble with my appetite. It is becoming very difficult to find foods that are remotely appealing to me. This has affected my weight a bit but we are working on it.

Thank you for your continued prayers.

Please continue to pray for us. It would be nice if my current, familiar treatment would start working like it did in the beginning again but I’m not sure how likely that is.

Pray for more treatment options.

I received the results of my latest CT scan today.

The results were not good. The current experimental treatment I have been receiving in Toronto is not working, so I will no longer be participating in that study. The CT scan showed significant growth on my liver which, if it continues, will cause my liver to totally fail and kill me.

I will be going back to my oncologist in Cambridge to see if he has any more options for me.

I get the sense that I don’t have too much more time left.

Fascinatingly, I still don’t really have any pain. The pressure in my abdomen has increased to the occasional ache but it’s still nothing a Tylenol can’t cure.

Of course I am not giving up yet, nor will I ever, but this is certainly a significant setback.

I’ve known this day was coming for five years now. I don’t like it but there’s not a lot I can do to prevent it. In fact, I think I’m doing all I can. I don’t know of anything else to do besides pray. Please join me in doing so.

Please pray for my family, who are not thrilled with the idea of me leaving them.

Please pray that my oncologist will be able to offer me some more treatment options and that these treatment options will work.

It’s been almost a month since I started my new treatments at Princess Margaret in Toronto. I probably should have mentioned earlier that, yes, I made it into the trial. I am officially being experimented on, or something like that.

I made it through the liver biopsy I mentioned in my last post. The doctor overseeing the procedure didn’t think it necessary to knock me out so I was wide awake while the fellow fished around inside my abdomen, extracting 10+ samples of my tumour. The doctor had to make a second hole to get enough samples. The wound was VERY unimpressive. I had conjured up a much more impressive image of the fishing holes in my head during the procedure. I think I liked my last biopsy better when they knocked me out and went down my throat.

I’ve been in Toronto countless times this past month. Even had two overnight visits so they could monitor me. My visits are gradually getting fewer though.

So far I am having basically 0 symptoms. I had a little fever on my first infusion but nothing since.

I take 4 pills every day for 2 weeks and then I get 1 week off.

Every two weeks I have an IV infusion to deliver the other part of my treatment. It only takes an hour to do the IV but it takes hours of waiting before I even get a chair in the infusion room. They give me an IV dose of Benadryl first and then finally they hold me  an hour for observation afterwards. I hate the Benadryl as it makes me VERY tired which makes it impossible to work. Princess Margaret is so big/busy that they hand you a restaurant style pager when you check in for treatment and they page you when your chair is ready.

After the first few Toronto trips I started taking the GO train from Kitchener to Union Station. From there it’s just a quick subway ride to Queen’s Park and a 1 minute walk to Princess Margaret. 

I actually am really enjoying the train. Once out of Toronto it’s a pretty scenic ride. I usually travel at less popular times of day so I usually have an entire train car almost to myself.

I wish every city had a subway system. So much better than the bus.

Leanne and I were getting so good at public trasportation in Toronto that we decided to try our skills in NYC. We caught a Broadway show while we were there too!

We won’t know if this new treatment is doing anything until my next CT scan or CEA level. My next scan is Aug 24th and I meet with my doctor a few days later.

I still have pressure in my lower abdomen from my expanded liver. I think it’s getting VERY gradually more noticeable but it’s so gradual I barely notice a change. Still no pain, yet.

Please continue to pray for us.

God has been taking care of us so wonderfully these years.

Please pray for this treatment to work.

Pray for my continued tolerance of public transit. I have a feeling my enthusiasm for the train may diminish a bit once the weather gets a little colder.