Switching Things Up

Well it is time for a change. I have been taking Dasatinib since my initial diagnosis. Overall it has been going well. I do have a number of side effects that I deal with to this day. Extreme fatigue and nausea being at the top of the list.

In the past my hematologist has given me the option to change to a different medication. I always said no because if the medication is working (keeping the cancer cells under control) why change. We slowly decreased my dosage in the hopes that it would help alleviate some of the side effects. I believe it did make a difference. 

Unfortunately, as we got to a lower dosage my numbers started to slowly creep up. I had to have a slight increase (but still a lower dosage) in my meds. I know now that I will not be a good candidate to try TFR. This was again indicated when I took a 4 week break when I had surgery recently, as my numbers increased slightly.

My numbers are still in a safe range but as you can see by the graph they have stayed pretty steady (no more decreases). There was a tiny jump in Feb, not sure why, and the jump in May was from when I had my little break.

Well that time has come to take a leap and make a change. My Dr. did say that as with any medication, there is no guarantee that it is going to work as well or that the side effects are going to be easier to deal with. 

I am hoping for the best but preparing for the worst! 

In the beginning it was pretty rough but I was also quite a bit sicker then. So keeping my fingers crossed the side effects will be minimal and won't last long. 

Here is a list of some of the possible side effects.

Most Common and Mild - swelling, nausea, vomiting, muscle cramps, diarrhea, rash, hair loss, belly pain, fatigue.

There is also more serious side effects listed including allergic reactions, eye related issues, kidney/liver damage. 

If you are curious to read in more detail, here is a link.

When compared to the “listed” side effects of Dasatinib they are pretty much the same. But, from experience I know there are more possible side effects because I had them. Things like mouth sores, scalp tenderness, bone pain and more. 

I have a binder that I keep all my medical records in and I tracked all my side effects for a year. I will probably do the same just to compare. 

For anyone with CML, the graph was done with the Know Your CML app. provided free through The CML Advocates Network. You can track your test results, track any side effects, do some meditation, and there is also an education section as well. 

Saying Good Bye

Many of us have been effected by cancer in one way or another, either through our own diagnosis or supporting a family member or friend. It’s not an easy road. Our stories may not be the same but we all have the same goals and that is to support each other any way we can. 

As someone living with cancer, and being a part of the cancer community as a patient advocate I’ve met some amazing people. One such person was Karen, also known as Keto Karen. She was passionate about life and helping others, whether through weight loss, healthy eating or cancer support, she was a beacon of light for many. 

Support groups can be vital especially for your mental health. While I was not part of her cervical cancer support groups I can only imagine she left a huge impact on many within them. That’s just the kind of person she was. 

Taking care of your own mental health is vital in helping with recovery and Karen also shared that with many of her Facebook friends. She’d post videos sharing and reading books she found helpful. 

She was a fantastic advocate and spent countless hours educating herself on new treatments and therapies. She had a wonderful oncology team that was very supportive with whatever she brought forward to them. There were even a few things that her oncologist had to research, as she hadn’t heard about them before. 

Leave it to Karen to set the bar. 🙂

Within the cancer community it is inevitable that we will have to say goodbye to friends we’ve met along the way. It’s never going to get easier, especially when you know someone who has had such in impact on so many people. 

Back in April 2022 Karen shared her cancer story in our local paper. You can read Karen’s article here.  

IN MEMORY of Karen, please share information on the signs of cervical cancer with all the women in your life. 

Fly High Beautiful Angel

When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live. We will all die one day; perhaps the winner here is the person who does it under his or her own terms; the person who dies peacefully and not at war. Let us focus on the life that people enjoyed before being told “you have cancer” and remember them as victors in life, not losers in death. Let us stop letting cancer appear to be the winner.

Stuart Scott, ESPN anchor.

Cancer with a Sign

As a person living with an incurable chronic cancer and as a cancer patient advocate I am always looking for ways to support having our voices heard.

I am happy to help support this new initiative taking place called #CANCERWITHASIGN.

Details below as posted by The Cancer Collaborative

Cancer is no laughing matter, but sometimes, you've just got to find the humour in the chaos. That's why we're inviting cancer patients, survivors, caregivers, advocates, anyone really, to share their wishes, experiences, frustrations, ideas, and even funny quips about their cancer experiences by holding up a cardboard sign. Its cancer meets dude with a sign.

Whether it's poking fun at the endless waiting room waits or expressing a real desire for change in cancer care, the #CANCERWITHASIGN campaign is all about using humour as a powerful tool for connection and advocacy.

Grab a marker, get creative, and join us in sparking conversations about the ups and downs of the cancer journey. Let's turn our frustrations into fuel for change. 

Share your sign, share your story, and let's make some noise for a world where cancer isn't just survivable—it's laughable. join the #CANCERWITHASIGN campaign today!

dm us @cancerwithasign on IG or send an email to cancerwithasign@cancercolab.ca

We Don't Get to Ring The Bell

Back in July I wrote a post about some books I thought were worth sharing. They were not specific to CML except one but all worth reading in my opinion.

I just recently read this book by Anne McAuley Lopez who is living with CML. I really enjoyed it. If you are curious about what it's like to live with CML this is the one book to read.

It can be easily downloaded or purchased through Amazon - Kindle. 

We Don't Get to Ring the Bell

If you do not have an amazon account or use kindle or kindle app, reach out to me and I may be able to help.

New Year, New Beginning…….New Direction?

What was the idea behind starting this blog? 

I have told this story before but I think it needs to be revisited to understand my thought process.

When I was first diagnosed in 2017, I did not feel like I was given a lot of support from my medical team. I spent weeks scouring the internet looking for answers and hoping to find someone else to talk to.

I did finally managed to connect with Lisa who runs the Canadian CML Network. She sent me some information and was able to connect me to someone that lived closer to me. I can tell you, that made all the difference to me. So much so that my husband and I made a plan to travel to her city to meet in person. Lucky she lives in a great place to visit which is only about 4 hours by car. 😄

When it comes to CML we do have a few organizations dedicated to education and support. Here is a list of 3, but there are a few others as well.

The Canadian CML Network

The National CML Society

CML Advocates Network

 

So what more can I add? 

That's what I keep asking myself. 

My original goal with getting into patient advocacy was to help anyone newly diagnosed with CML have someone to talk to and help guide them to information. 

We all know you can head down a rabbit hole looking stuff up online. 

I will continue to share my story whenever I can but because I struggle with daily fatigue I find it hard to post as much on this blog as I’d like to, so it’s not really reaching as many people as I was hoping. 

I’ll be doing a bit more thinking over the next few months to see what I feel is the best direction.