Tag: chemotherapy

Posted on by John Clark

Latest treatment is working

I received a second good CEA (tumour marker) test result yesterday that seems to indicate that my cancer’s growth has slowed down. After my first 2 treatments the growth rate decreased by 25% and after another 2 more treatments the growth has decreased by 35%. My level is still VERY high but it is moving in the right direction again. I should be having a CT scan at the end of this month to confirm these indicators and I hope to see a possible reduction in tumour size.

I am still relatively side-effect free from the new treatment. I still have a rash but it’s quite manageable. The constipation from my anti-nausea medication seems to counter-act the diarrhea I would normally get from Irinotecan. I have been feeling a little fatigue during the week after treatment—not enough to affect my normal routine but I am noticing it. The pressure in my abdomen is still there sometimes but I don’t really have any pain. Oh and I had to shave my head once again as my hair was falling out with the slightest touch.

I have now had a cancer diagnosis for 5 years. I don’t search out statistics deliberately but I did happen to stumble across one when looking into one of my medications and it said that 87% of colorectal cancer patients do not make it to 5 years.

I’m just happy to be alive.

Please pray that I will continue to beat the odds, Lord willing.

 

Posted on by John Clark

Cetuximab

It took a bit of work but I finally started a new chemotherapy treatment last Friday.

Since I don’t have private health insurance I had to apply for compassionate coverage from the drug manufacturer. Thankfully I was approved and that process only delayed my treatment by a week.

The new drug is Cetuximab which is apparently similar to Panitumumab which I was on for 4 years with good results. I was told to expect similar side affects like sensitivity to the sun and they basically guaranteed that I would get a rash.

I also received a referral to a radiation trial in London. My appointment is next week.

Prayer requests:

Thank God that there are still treatment options available for me and that I was able to be approved for compassionate coverage of the new drug.

Pray that this treatment works and as before blows away my doctor’s expectations of how long it will keep working!

Posted on by John Clark

Second Line

After four years of the same chemotherapy treatment it appears to have finally stopped working as well as it did at first. I have a CT scan booked for Monday, February 6, to confirm this suspicion. Over the last few months the amount of CEA (carcinoembryonic antigen) in my blood has continued to rise and I have been feeling increased pressure in my lower back. It is now time to begin a second-line treatment.

I mentioned a new drug trial in a previous post and am now in the process of being enrolled. A lot of these types of trials are done in Toronto but this particular one is actually taking place at my local hospital in Cambridge. The trial is specifically for second-line stage 4 colorectal patients which exactly describes my situation.

My oncologist described this trial as intensive–not that the treatment itself is harder to endure, it just involves a greater number of appointments for me. I will be undergoing a barrage of tests before and during the trial. Sounds like I will be at the hospital even more than I currently am.

There are two arms of the trial, the standard care group and the experimental group. I may or may not be selected for the experimental group, however even the standard care group still provides better treatment than the typical second-line treatment I would receive if I did not participate in the trial.

If I am selected for the experimental group it will mean spending two full days at the hospital every two weeks instead of my usual single day. Unfortunately this means my standard Friday chemotherapy day will need to change. Currently it sounds like my treatment days may be Wednesday and Thursday. If I am in the control group I will only need to spend one day at the hospital every two weeks for treatment.

Besides hopefully postponing my death a bit longer, the new drugs are not as likely to cause diarrhea or a rash. The base treatment drugs are similar to what my mother went through last year and she, unlike myself on my current regimen, did not need to rest for two days post-treatment. This makes me hopeful that I won’t need as much downtime after my treatment, especially since it will be in the middle of the week.

I am well aware that I have surpassed my initial one- to two-year life expectancy. I still get quite the surprised reactions from doctors when they learn I have been on the same treatment for four years. Whenever highly educated people are surprised I think that is a pretty clear sign that God is working. I thank God constantly that I am still alive and get to enjoy my family.

These could be my last days here on earth. I hope not, but they could be. God has seen me through four years of constant poisoning, surgeries, and countless hours on the toilet. I pray that He will give me at least another four years. I will not give up. I have four little motivations at home to keep on fighting.

Please pray for my healing, whether it be through this new treatment or preferably just a nice miracle. Whatever happens, may God’s will be done and may He be glorified.

Posted on by John Clark

Another Break

I survived my second chemotherapy treatment a little better than the first. At least I didn’t need to go to the ER this time. The reduction of the diarrhea-causing chemotherapy drugs may have helped a bit, but I think my weight loss may have interfered with the doctor’s reduction calculations, which may explain why my diarrhea was still very present. I was able to work a little more in the week following chemo but still not as much as I would have liked.

Next time will be better. I met with my oncologist a week or so ago for my monthly check-up. He is going to further reduce my chemo drugs. I also learned that part of my problem was that I was dehydrated. Apparently lack of hydration can affect your appetite which explains why I was having trouble eating. I have now resolved to force myself to drink my required amount of water, as I understand how important drinking water is to my recovery, especially when I am losing so much from my bowels.

My oncologist also gave me another break over Thanksgiving to get my weight back up. I’m about 10 lbs. lighter than I would like to be at the moment but Leanne cooked a turkey yesterday so I will spend the week eating hot turkey sandwiches smothered in gravy and that should do the trick. (I rather enjoy trying to gain weight.)

My next chemo is scheduled for this Friday, October 22.

On another note, my oncologist recommended a (definitely not free) genetic test which may open the door to other treatment possibilities down the road. Unfortunately, it may also be a complete waste of money. It will be good to have options when inevitably my current chemo drugs stop working.

It’s almost time to shave my head again. I was surprised that my hair would fall out so quickly after only 2 treatments.

My ostomy wound appears to still be healed over and I have yet to experience another abscess in my abdomen which means my fistula has also finally healed.

  • Please pray that I can stay hydrated and that the diarrhea will not interfere too much with my quality of life.
  • Pray that the genetic test will be useful.
  • Pray for Leanne; it has been tough for her taking care of everybody.
Posted on by John Clark

Life is short

Life is short. I am constantly reminding myself of this fact. For a Christian, this life is also a temporary one, a tiny speck of eternity.

Recently my mother has been diagnosed with stage 3 cancer. She has been told that her cancer is curable, but still, she is finding it a bit overwhelming to be in the patient’s chair this time instead of the caregiver’s. Please pray for her as she goes through several more months of chemotherapy.

As for myself, I am just finishing a 2-month break from chemotherapy. My ostomy wound has once again completely healed and hopefully my fistula has healed as well. I will be starting back on chemo this Friday, Sept. 10.

Before my break, my CEA test revealed that the last batch of chemotherapy is still working which, according to my mother’s oncologist is “amazing.” I get the sense that it is not common for the same chemotherapy drugs to remain effective for this long and that she (the oncologist) was a little surprised that I am still alive. I am thinking that prayer may have had something a lot to do with it.

I had another CT scan last month which, unsurprisingly, showed the cancer was growing again in my lungs and liver. I also had a CEA test which showed levels in the 50s again, confirming this growth. My oncologist thought it would be best to resume treatment very soon.

I have thoroughly enjoyed my break. It was so wonderful to be “off the toilet” for awhile. We were able to get away for a few weeks this summer camping in our little tent trailer. I went canoing for the first time and only crashed a few times.

We also rented a bouncy castle for the girls’ birthdays and hosted a neighbourhood kids’ club in our backyard, run by our church. Both events were a lot of fun for our kids.

Poppy is now 6 months old and getting nice and pudgy. She is working on sitting up on her own and enjoying real food. She is a pretty happy baby as long as no one ever leaves her alone which is not usually a problem now in our household. 

We are year-round homeschoolers, taking breaks whenever we need them, so right now when many children are going back to school, we are just picking up where we left off before our last camping trip. Magnolia is 4, Daisy is 6, and Harry will be 9 in November. They would be entering JK, grade 1 and grade 4 respectively.

In their homeschool lessons this week, the kids learned that God has a plan for our lives (Jeremiah 29:11) and “will put beautiful crowns on their heads in place of ashes” and “give them a spirit of praise in place of a spirit of sadness” (Isaiah 61:3 NIRV). With that in mind, we praise Him for all the beautiful things he has allowed us to experience this year, like Poppy’s birth and our summer outdoor adventures.

Pray that God will continue to do amazing things in my life and that my chemotherapy will continue to work. I know one day it will inevitably stop working, but I am at peace with that because I know I will spend eternity with Him. Until then, I’ll continue to enjoy the life He’s given me and do my best to honour Him with it.

 

Posted on by Leanne Clark

January update

Happy New Year, everyone! May you find many reasons for joy and hope this year.

After about a month off, John is back on chemo again. His first treatment was on Friday, January 8. He lost his appetite (and 10 lbs.) over the weekend, but so far the other side effects haven’t kicked in yet. Basically he just slept a lot.

I gave him his first Grastofil injection today to help keep his white blood cell count up. Six more to go before the next chemo day on the 22nd. Being back on Grastofil means he can probably proceed with treatment uninterrupted until he and the doctor decide it’s time to take a break again. He’ll have another CT scan in about three months to re-evaluate.

Please continue to pray that the chemo will be effective, that God will give the doctors wisdom in their decision making, and that I will have the strength to take care of our family on the days when John is not feeling the best.

Keep praying for the baby too. My last ultrasound the week after Christmas showed she was growing normally, kicking and moving around, and she had a normal heartbeat, so we are very thankful for that. I found out earlier in December that I have gestational diabetes for the first time in my life, so I’ve had to monitor my blood glucose daily and follow a special diet, which so far has helped keep my numbers on target without the need for insulin shots — another thing I’m thankful for.

I’ll close with a little story to brighten your day. Sometimes I use Bible verses for the kids to practice their handwriting, and I stuck a copy of Philippians 4:13 on our fridge back when Harry was memorizing it. It’s been there for months. The other morning, he saw that I was tired and I must have seemed frazzled because he pointed to it and said, “Mom, just remember, whenever you feel weak, read this verse.” I just thought I’d share these words of wisdom from an 8-year-old for anyone else who could use the reminder today.

“I have learned the secret of living in every situation… I can do everything through Christ, who gives me strength.” Philippians‬ ‭4:12-13‬ ‭NLT‬‬

“When peace like a river attendeth my way, when sorrows like sea billows roll, whatever my lot Thou hast taught me to say, ‘It is well, it is well with my soul.’” Horatio G. Spafford

Posted on by Leanne Clark

Uncertainty and Emmanuel

John asked me to write a brief update to let you all know how he’s doing. He feels great and has been able to work lots of hours lately. The reason for that, however, is that his most recent blood test showed he did not have enough neutrophils to go ahead with his last chemo treatment on November 26.

The oncologist decided to give him a short break from chemo to allow his bone marrow time to make more neutrophils (bacteria-attacking white blood cells). This will also give his surgical wound more time to heal. John is going back to show it to the surgeon on Monday, then he sees the oncologist again on Wednesday. He has another chemo treatment scheduled for Thursday, December 10, but that will be dependent on the status of his wound and whether he has enough neutrophils. If not they might postpone treatment till January and he will likely need Grastofil injections again.

Thank you for continuing to pray for our family. I realize that we are all living with some degree of uncertainty right now and facing the prospect of a different kind of Christmas than usual, so I want to share something that encouraged me this week.

Our church had sent us an Advent box with activities to do at home with the kids. Last week the theme was Hope, and one of the activities was to have them draw a picture of themselves in a scary situation (e.g. alone in a dark bedroom with a monster’s eyes peeking under the closet door). Then we talked about how Jesus is always with us and how the name Emmanuel, which we sing in a familiar Christmas carol, actually means “God with us.” Finally, the kids were asked to add one more thing to their drawing: Jesus standing right there beside them. To me, that was such a comforting reminder! Whatever our future holds, Jesus will be right there with us. Emmanuel.

“So do not be afraid. I am with you. Do not be terrified. I am your God. I will make you strong and help you. I will hold you safe in my hands. I always do what is right.”

‭‭Isaiah‬ ‭41:10‬ ‭NIRV‬‬

Magnolia, Harry and Daisy
Magnolia, Harry and Daisy

Posted on by John Clark

October

I’m a bit behind on my updates but I have nothing too surprising to report.

I had a CT scan last month. For my situation, the results were good. The cancer has not spread anywhere else that they can see, however, as expected, the cancer is growing again in both my lungs and liver. 

I will be going back on chemo every two weeks starting Oct. 29. It will be on Thursdays this time instead of Fridays. I liked the Fridays because it meant I would be unavailable for a minimal number of business hours. I lost a little time Friday afternoon and Monday morning while I did hyperthermia but those hours were easy to make up. Unfortunately, they weren’t able to put me on the same schedule this time. For the first cycle, I’ll be on only 2 of my 3 usual chemo drugs due to my stoma incision that refuses to heal. We are skipping the panitumumab as it can impair healing, and this wound is taking long enough to heal as it is. That drug is likely the reason why my toe took so long to heal. I’ll be rash-free for awhile as panitumumab is the drug responsible for that side effect too.

My stoma incision is getting much closer to being fully healed though. The drainage is negligible. 

Leanne is now 22 weeks pregnant and is doing well, although we can no longer use Hubert as a pseudonym for the baby after her most recent ultrasound. We’ll have to change it to something a bit more feminine like Huberta.

Poor Harry. His hopes of no longer being outnumbered by little sisters have been dashed.

In all seriousness though, we are thankful that there have been no complications with this pregnancy so far. Thank you for continuing to pray for Leanne and the baby’s health.

As for me, please pray that the chemotherapy will keep working and that I’ll be able to tolerate the side effects.

Posted on by John Clark

August

Summary: I still have a drain and my stoma incision is leaking, but God is good and I feel fine.

  1. The Hospital
  2. The Oncologist
  3. The ER
  4. The Surgeon
  5. Hubert
  6. Pray

The Hospital

I wasn’t expecting to be released from the hospital so soon. The Saturday night before my release I was laying in my bed praying and contemplating how many more days I would spend away from my family when my doctor showed up. Normally I get a visit from a doctor in the morning, never in the evening, so I was quite surprised by this visit. I was even more surprised and overjoyed when the doctor told me he was going to send me home in the morning.

I felt pretty good. My drains hurt when I moved but that was about it.

I was home Sunday afternoon and it was wonderful.

The Oncologist

I met with my oncologist last Wednesday, August 19. Prior to my appointment I had to get blood work done which meant a long walk across the hospital and back for me and my drains. I made it, although it took awhile. My oncologist has booked me in for a CT scan on September 16, and on September 18 we’ll discuss the results. If things are good, he may keep me off chemo for awhile longer.

The ER

Last Friday, August 21, my home care nurse (who is awesome by the way) told me to go to the ER. She was concerned about the increased volume of fluid that was coming out of my stoma incision. She discussed my case with one of the doctors she works with and they suspected I had a fistula. I got to the hospital around 1pm and they eventually gave me a CT scan to see if there were any issues. The CT scan was good. They were concerned there could be a new pocket of fluid beneath my stoma incision that was causing the increased stoma site drainage but there was not. They still suspected I had a fistula but they can’t tell that from a CT scan. There was nothing urgently wrong with me so after waiting around a couple more hours for a surgeon to review my case they did eventually send me home! I had a nice private room and bathroom for most of the day in the ER but then they decided I wasn’t sick enough to justify a bed so they made me sit in an uncomfortable chair while I waited for the surgeon. I spent 12 hours in the ER that day but that’s ok because they sent me home. I had leftovers from Daisy and Magnolia’s birthday party that I missed when I got home at 1am.

The Surgeon

On Thursday, August 27, I had my follow-up appointment with my surgeon (from my ostomy reversal). He said that my left drain could come out but he wanted to leave my right drain in as he saw a little more fluid on my right side in last week’s ER CT scan. He also confirmed I had a little fistula and that it should clear up on its own, although slowly. I have an in-person appointment with him next Thursday, September 3. I have an ostomy bag over my stoma incision right now just to catch all the not-so-nice smelling fluid that is leaking from the incision. The amount went from around 60mL/day to now around 5mL/day. My right drain has been immeasurably low (0mL) for over a week now. I expect the surgeon will order the removal of my right drain when I see him this week.

I was taking Tylenol earlier last week but I haven’t had enough pain to warrant any sort of pain medication for quite a while now. My right drain site still hurts a bit but I am moving around a lot more than in previous weeks.

I just wish I could have a shower. I am long overdue.

Hubert

In case any of you are not on the Facebook, Leanne and I are having another baby who is due March 1, 2021. To continue my father’s tradition of assigning a prenatal pseudonym to new babies, this baby will henceforth be referred to as Hubert until we are sure about the gender or the baby is born. Hubert was unplanned, at least by us. We always wanted a fourth little munchkin (I don’t like odd numbers) and despite my condition we were seriously considering having another one back in February. Those dreams were quickly shattered when we were told my cancer was growing again, which caused us to make the difficult decision that we were done having children. We were so sure about it that we immediately went out and got a dog and started giving away the baby stuff.

Apparently our plan differed slightly from God’s plan because we experienced a minor birth control issue on ovulation day. It’s actually rather surprising we got pregnant at all because apparently it’s common for chemotherapy patients to struggle with infertility. Not me! 

According to the manufacturers of my chemotherapy medication, pregnancy is not a good idea while using said drugs. However, we could not find any data that says why it’s not a good idea. Even my oncologist didn’t have any answers. I think the lack of data is related to the typical age of people with cancer. We are going to do a little extra non-invasive testing with this pregnancy just so we have as much data as possible if there are any issues with little Hubert’s health. We are so happy and thankful to God for this new life!

Pray

Thank you for all your prayers. From getting my drains installed sooner than expected to being released from the hospital, God has answered our prayers.

  • Please pray that my fistula would heal on its own and heal quickly.
  • Pray that my CT scan will justify a further extension of my chemotherapy break.
  • Pray for Leanne. She has been doing so much for me this past month while fighting through her first trimester nausea. She is feeling better now that she is in her second trimester. Pray for strength for her as she soldiers through this pregnancy while dealing with my health issues and homeschooling our children.
  • Pray for little Hubert. Pray for his (or her) health and that my chemotherapy drugs will not have any affect on him. 
Posted on by John Clark

Pandemichemotoe

Bottom line: I’m still alive. Chemo is hard. Please continue to pray.

 

It’s been awhile since I have posted anything. It’s taken me almost 2 months to come up with anything noteworthy to report. I even had to go to the trouble of messing up my toe again just so I could make this post more interesting.

The pandemic

So far we are unaffected. I have a nice spreadsheet of all reported cases from around the world because I like data and spreadsheets. I’ve been working from home for over 7 years now and we’ve been homeschooling for roughly the same amount of time. We are all quite used to being together all the time.

I am one of those people with an underlying health condition due to my immune system trying to heal me from the havoc of chemotherapy every two weeks. If you have a little extra prayer time after you have prayed for the people who have COVID-19 and after you have prayed for all the nursing home residents, you could pray for a little protection for us immunocompromised folks.

Chemotherapy

I do not like chemotherapy.  My treatment is considered “essential” so I still get to go to the hospital every other week for my dose of poison. I get to wear a mask now at the hospital. I didn’t like the ones they gave me so my mother made me a Mario one.

Mario mask

To comply with social distancing the hospital removed half of all the chemo chairs in the room so it’s really nice and spacious now. The downside is that no visitors are allowed. As usual, I bring my laptop and I get to work in peace and quiet for 5 hours or so.

As someone who was hospitalized for 15 days last November, I especially feel for all the patients in the hospital that can’t receive visitors right now. Staying in the hospital is bad enough but I can’t imagine being stuck in there without your family or friends being able to visit. Please pray for all the hospital patients.

My chemo treatments have still been tolerable, although I have been extra nauseous during the past few. I’ve been dry heaving multiple times on day 1, 2 and 3 and even managed to actually vomit a few times now. This is different from last year. I am trying some new nausea pills this time, so please pray they do the trick.

It’s been very difficult to eat or even drink anything on the weekends I have chemo. I traded in my water for apple juice which has helped me drink more fluids. I don’t even bother trying to eat because my appetite is non-existent. This only lasts until Monday, Day 3, when I feel about 95% like myself. By Wednesday, I am back to 100%. My current post-chemo craving is a Mango Pineapple smoothie from McDonald’s. I’ve been having one every time after we return home from my Day 3 hyperthermia session.

On my last two chemo treatments I managed to drop over 10 pounds from Thursday night to Monday morning. I gained most of it back over the following week, but I thought 10 pounds in 3 days was impressive (or perhaps disturbing would be a better word). There has got to be a weight-loss product idea in there somewhere…

My next chemotherapy treatment is booked for May 15. I can’t remember how many more I am to have but there should be a CT scan coming up soon.

My rash is still quite present. It’s on every area of my body except my feet. I am taking antibiotics and have a few skin creams to help keep it at bay.

When I am not on chemo I still feel great.

Leanne and I are old pros at ostomy care now. I need her help due to my lack of depth perception. She’s better with stickers and scissors anyway. I was hoping to have my ostomy reversed soon but that is a non-essential procedure so I’m stuck with my bag for awhile longer.

My dear wife is now an expert at giving me my Grastofil injections. All the post-surgery daily anti-blood-clot injections must have helped build her confidence, because Leanne is now an expert at stabbing me. She was worried about hurting me in the beginning, which actually made it hurt worse. Now she doesn’t hesitate, she just jabs that needle in my leg and we’re done in no time. The injections are merely a slight distraction from our conversation.

On my last visit to the oncologist my white blood cell count was so high that he told me to do fewer Grastofil injections. Instead of 7, we are now doing 6 per treatment and will likely be going down to 5. This would be much more significant if we had to pay out-of-pocket for these needles that cost $140 each, but the manufacturer and Trillium are still footing the bill. (Thank you all for paying your taxes.)

My toe

Remember my ingrown toenail I had back in August? Well it came back. I was SUPER careful, I was too scared to cut my toenail at all, but it still came back. I didn’t let it get as infected as last time though before going to my family doctor. He had his colleague, a nice young doctor who couldn’t have been more than a year or so older than Harry, do a different procedure which essentially removed the overgrown skin from the sides of my toe.

This Vandenbos procedure has a longer recovery time than my last toe fix in the ER (6-8 weeks vs. 1 week). As of yesterday, Tuesday, it will be 2 weeks since I had it done. I still have to soak my toe 3 times per day for 4-6 more weeks. The pain isn’t too bad but much worse than in August. I have some neat photos but Leanne won’t let me post them.

If there is still room left on your prayer list, I suppose my poor toe could use some prayer as well, although I’d still prefer you pray that God will heal me from the cancer.

My next post will likely feature something regarding a CT scan unless something else exciting happens to me in the meantime. You know I still have 9 toes that aren’t currently ingrown…