Take Your Pick

Well maybe it isn't as easy as "take your pick" but pretty close.

This process will depend on your Doctor and their practice and experiences.

When I was diagnosed my hematologist went over the top three TKI's that are usually prescribed first. Gave us some feedback and her opinion on all three meds. She then gave me the option on which one I wanted to try.

Any other health related issues need to be taken into consideration as there are a few well know side effects from these meds.

Now this may not be everyone's experience. I've heard from many others with CML that they were just given a prescription and most have started with Gleevec which is the standard first line drug.

Below is a list of the targeted therapy medications used to treat CML.

The following targeted therapy drugs are used to treat CML.

Imatinib (Gleevec) is the standard first-line therapy for CML. It is usually taken once each day as a pill by mouth. The dose may be increased in the accelerated and blast phases if the CML relapses or if treatment doesn’t improve blood cell counts. Treatment with imatinib can continue for a long period of time if it controls the disease.

Dasatinib (Sprycel) may be given as the first-line therapy for CML. It may also be offered if someone cannot cope with the side effects of imatinib or if the CML does not respond to, or stops responding to, imatinib. Dasatinib is usually taken once each day as a pill by mouth.

Nilotinib (Tasigna) may be given as the first-line therapy for CML. It is given as a capsule that is taken by mouth twice each day. Nilotinib may also be offered if someone cannot cope with the side effects of imatinib or if the CML does not respond to, or stops responding to, imatinib.

Bosutinib (Bosulif) may be given if someone cannot cope with the side effects of, or the CML is resistant to treatment with, imatinib, dasatinib or nilotinib. Bosutinib is usually taken once each day as a pill by mouth.

Pontatinib (Iclusig) may be given if the CML is resistant to other targeted therapies or if the leukemia cells have the T3151 gene mutation. Pontatinib is usually taken once each day as a pill by mouth.

Asciminib (Scemblix) is a TKI targeting a very specific area of the BCR-ABL protein. This drug is used to treat patients with chronic phase CML if two or more other TKIs have already been tried or if their leukemia cells have a gene change called the T315I mutation. Asciminib is another TKI to work against CML cells that have the T315I mutation.

Are You a Spoonie?

I think I left all my "spoons" in Toronto. 

In a previous post I mentioned that I was heading to Toronto for the Health eMatters conference. It is an inspiring and educational 3 days meeting with other cancer advocates and learning new ways to make our voices heard online.

Since my diagnosis fatigue is something I have struggled with on a daily basis. I have to choose how I’m going to use my energy (spoons) and know that there will be times that I will have to push myself to do things that are important to me, being fully aware that I will have to deal with the recovery process later.

I’ve been home for a week and haven’t had the energy to do much of anything. I did manage to go get some groceries on Tuesday and then did have a bit of energy Thursday to do up 2 gift baskets (2 more to get done) we are donating for an upcoming charity event. Besides that I haven’t done much more than sleep, read some inspiring books and watch tv.

I’ve also been having a lot of nausea and trouble sleeping which is something else I deal with on a regular basis and doesn’t help with the recovery process.

I’m still quite exhausted and this time around recovery seems to be taking a bit longer to get my spoons back!

If you haven’t heard of the SPOON THEORY it is an amazing way to explain how some people with illnesses need to consciously think about how they are using their limited amount of energy. 

Online Advocacy Matters

I am excited to have the opportunity to attend the 2nd Annual Health eMatters Conference in Toronto Oct 27 - 29, 2022.

This conference is organized by Myeloma Canada and is open to all cancer advocates. The statement below is posted on their webpage.

Health eMatters is a program for online Canadian cancer advocates to network, learn, be inspired, and sharpen their skill sets to become better at raising awareness on the issues that matter most to them.

The conversations you have with your audience about cancer puts you in a unique position to make a difference in people's lives.

Health eMatters helps individuals harness the power of the digital world to champion the issues faced by people affected by cancer. You can be a:

Social Media Influencer

• Vlogger
• Blogger
• Website content writer
• Podcaster
• Filmmaker
• Animator

Whatever your method, if you are discussing cancer online and want the public to be more aware of the different issues facing those affected by cancer then we are here to support you.

Target Therapies for CML

What is Targeted Therapy?

Targeted therapy is the standard treatment for CML when the leukemia cells have the Philadelphia chromosome (called Ph-positive, or Ph+, CML). This is usually determined by a bone marrow biopsy (BMB).

Targeted therapy is a type of treatment that uses drugs to target specific molecules (usually proteins) on the surface of cancer cells. These molecules help send signals that tell cells to grow or divide. By targeting these molecules, the drugs stop the growth and spread of the cancer cells while limiting harm to normal cells. Targeted therapy may also be called molecular targeted therapy.

Thanks to medical research there are now 6 different types of targeted therapy drugs available to help in the fight against CML. Therapies used with CML are referred to as Tyrosine Kinase Inhibitors.

When I was first diagnosed we discussed the three main drugs which are Imatinib, Dasatinib, and Nilotinib. We went over some of the "reported" side effects, any issues my Hematologist had seen in other patients, etc. She gave me the option as to which one I wanted to start with. I chose Dasatinib. I have been on it from day one but have had some side effects that I deal with. More on side effects later.

In another post I will list the available drugs for treating CML.

*Photo is copyrighted. Taken and supplied by Amber Noden

Newly Diagnosed with CML.....now what?

 

Firstly I’d say take a deep breath and just breathe. 

I’m sure you have many things going through your mind right now. I’ve been there, I completely understand. 

There are supports available to help you understand your cancer diagnosis. Below is a list of a few websites I am familiar with and that I highly recommend visiting. These websites may also include other resources not listed below.

There are also a number of support groups that can be found on Facebook and you can get support from other people with CML. I personally don’t post much in these Facebook groups but I do visit and read the posts and have had things I’ve thought about answered. Keep in mind this journey is your and only yours, not everyone will have the same experiences in regards to side effects or treatments.

Canadian Cancer Society

https://cancer.ca/en/

Canadian CML Network 

https://cmlnetwork.ca/

CML Advocates Network 

https://www.cmladvocates.net/

CML Society of Canada

http://cmlsociety.org

Leukemia and Lymphoma Society

https://www.lls.org/

Leukemia and Lymphoma Society of Canada

https://www.bloodcancers.ca/

The National CML Society

https://www.nationalcmlsociety.org/

Know Your CML

Thanks in part to all the hard work by everyone involved with the CML Advocates Network, a new app has been designed to help all CML patients, whether newly diagnosed or not.

Awareness Ribbons

 Throughout the month of September, in honor of blood cancer awareness month, I’ve shared some information about blood cancers. 

                                   

I thought I’d end on a bit of a lighter note to end out the month. 

Many groups and organizations have adopted ribbons as symbols of support or awareness, and as a result, many causes often share the same colour. Some causes may also be represented by more than one colour.

Wearing these ribbons shows that you stand for a cause and also encourages other to support the cause. Thereby, these ribbons promote a bigger mission.

If you are interested in learning more about the history of the awareness ribbon please check out 

https://en.wikipedia.org/wiki/Awareness_ribbon

If you would like to find out what some of the colours support please check out 

https://www.qualitylogoproducts.com/blog/awareness-ribbon-color-symbolism/

This Time It’s Personal

 THIS TIME IT’S PERSONAL 😊 

  

Every September 22nd, CML patients across the globe unite on World CML Day to raise awareness about CML.

9/22 represents the genetic change of chromosomes 9 and 22 that is the cause of Chronic Myeloid Leukemia.

However, there is still a serious lack of standard treatments and monitoring tools for CML patients in many countries over the world.

Access to basic medicines and diagnostic, treatment according to expert recommendations, accurate monitoring tools, effective side effects management, and the right information for patients and caregivers remain as huge challenges for many CML patients worldwide.

You can learn more about CML by visiting https://cmlnetwork.ca/

MY STORY ❤️ 

I struggled for about six weeks with an infection that just wouldn’t go away, even after a few rounds of antibiotics, high fevers that had me bed ridden for days, pain that radiated down my arm so badly that I couldn’t even lift it high enough to grab a coffee mug out of the cupboard, shortness of breath, and extreme fatigue. After all that, Jay insisted I follow up with my family doctor instead of going back to the local clinic. It was then that blood work was taken, and things would never be the same. 

I was diagnosed with CML in February 2017.

I was told that if you were going to get cancer, this was the best one to get. It has been called the “lucky leukemia.” I don’t feel lucky and for me it has not been an easy road, I struggle daily………physically, emotionally, and mentally.

I do not write this or any other posts about CML looking for sympathy or attention, I do it to bring awareness. CML is a rare cancer of the blood and after my diagnosis it was a challenge to find support. My experience was kind of like, “here is a pamphlet and good luck to you!” 

Being told you have cancer is shocking enough, no one should ever feel alone during such an emotional time.  By sharing my story, my hope is that it will let other people know they are not alone as they face their own cancer journey.

Different Types of Leukemia

September is blood cancer awareness month so I thought it would be nice to share a few facts throughout the month. 

Leukemia

The term “leukemia” refers to a cancer of the blood cells. There are four major types of leukemia. Because of differences in the characteristics of the different types of leukemia, there are also differences in how they are treated.

In understanding the four major types of leukemia, it is helpful to understand the following terms.

* Acute vs. chronic: when the term “acute” is used, it refers to a type of cancer that – without treatment – may advance quite rapidly, such as within months. In contrast, the term “chronic” refers to a form of cancer that typically progress much more slowly.

* Lymphoblastic vs. myeloid: these terms refer to the type of blood cell that is involved. “Lymphoblastic” or “lymphocytic” refers to a cancer affecting lymphocytes, white blood cells such as the B lymphocytes, T lymphocytes or natural killer cells. 

In contrast, “myeloid” or “myelogenous” refers to a cancer that involves a type of stem cell that has the potential to develop into a red blood cell, non-lymphocytic white blood cells such as granulocytes, or platelets.

In all forms of leukemia, the proliferation of abnormal, non-functional cells in the bone marrow and blood interferes with the production of normal, fully-functional red blood cells, white blood cells, or platelets. As a result, people with leukemia may develop anemia, have a reduced ability to fight infections, and may experience blood clotting disorders.

Keeping this in mind, the four major types of leukemia are:

1. Acute lymphoblastic leukemia (ALL) – a fast-growing cancer of lymphocytes (white blood cell) that results in the accumulation of immature, malfunctioning cells in the bone marrow and blood.

2. Chronic lymphocytic leukemia (CLL) – a more slowly-progressing cancer of the lymphocyte cells

3. Acute myeloid leukemia (AML) – also known as acute myelogenous leukemia or acute non-lymphocytic leukemia, AML is a rapidly-progressing cancer of myeloid stem cells.

4. Chronic myeloid leukemia (CML) – a more slowly-progressing cancer of the myeloid stem cells.

Treatment

Within each type of leukemia, there can be several sub-types depending upon the cancer cells involved, how mature they are, and how different they are from normal cells. Treatment options vary according to the type of leukemia and other factors, such as age and general health. The main treatment options include chemotherapy, stem cell transplant, or targeted therapy using drugs designed to only attach to specific antibodies or proteins on cancer cells. In special circumstances, other treatments may be used, such as surgery, radiation therapy, leukapheresis (removing white blood cells from the blood), or treatment with monoclonal antibodies. Advances in understanding the genetics of leukemia and how they influence the progress of the disease and response to treatment is opening new doors in individualizing treatment.

To learn more visit https://www.bloodcancers.ca/i-have-blood-cancer/leukemia

September 15th is Lymphoma Awareness Day

September is blood cancer awareness month so I thought it would be nice to share a few facts throughout the month. 

September 15th is Lymphoma Awareness Day.

What is Lymphoma?

Lymphoma is a cancer of the lymphatic system. In lymphoma a tumour develops due to abnormal and out-of-control growth of abnormal lymphocytes. Because the lymphatic system exists throughout the body and involves many organs, there may be cancerous tumours in many parts of the body. Lymphoma encompasses a variety of cancers specific to the lymphatic system, an important network of glands and vessels that make up the body’s immune system, our main line of defense against disease. 

There are two main categories of lymphoma: Hodgkin and non-Hodgkin (NHL).

The lymphatic system manufactures and circulates lymph throughout the body. Lymph is a clear, watery fluid that contains lymphocytes, white blood cells that fight infection and disease. Along the network are bean-shaped organs called lymph nodes or glands. The nodes are responsible for the manufacture and storage of these infection-fighting cells. Lymph nodes are clustered in the neck, armpits, in the groin and abdomen and may swell and become tender when the body is fighting infection (such as occurs in mononucelosis or strep throat).

When lymphoma occurs, some of the cells in the lymphatic system grow abnormally and out of control. Eventually, they may form a tumour that continues to grow as the cancerous cells reproduce. If all the cells are the same, they are called malignant or cancerous, because they will continue to grow and eventually harm the body’s systems. Because there is lymph tissue throughout the body, the cancer cells may spread to other organs, or even into the bone.

What is the Difference Between Hodgkin Lymphoma and Non-Hodgkin Lymphoma?

Lymphoma is an umbrella term used for over 50 related cancers. There are two general categories of lymphoma: Hodgkin and non-Hodgkin lymphoma (NHL).

The difference between Hodgkin lymphoma and NHL is the presence of Reed-Sternberg cells. A Reed-Sternberg cell is a cell derived from a B-lymphocyte and is only present in Hodgkin lymphoma. If Reed-Sternberg cells are present when the tumour is examined under a microscope, the diagnosis is Hodgkin lymphoma. If there are no Reed-Sternberg cells in a lymphatic tumour, the diagnosis is most likely to be NHL. NHL is more common than Hodgkin lymphoma, outnumbering it by a ratio of over six to one. Of all diagnosed lymphoma cases, 85% of them are NHL. Distinguishing between Hodgkin lymphoma and NHL is important to show different patterns of spread and that they require different treatments.

Find out more about the different types of lymphoma:

*  CLL

*  Hodgkin lymphoma

*  Non-Hodgkin lymphoma

To learn more visit https://www.lymphoma.ca

September 9th is MPN Awareness Day

What are MPNs?

Myeloproliferative neoplasms (MPN), known in the past as myeloproliferative disorders (MPDs), are classified as rare since less than 1 in 50,000 people develop them. They are chronic blood conditions which are more common in adults over the age of 60, but will sometimes also be found in children.

There are three major disorders which comprise the MPNs, these are;

1. Essential thrombocythemia (ET)

2. Polycythemia vera (PV)

3. Primary myelofibrosis (MF)

These diseases are differentiated by the major blood cell types involved. 

For example in ET it is the platelets and in PV it is the erythrocytes or red cells. The three MPNs (ET, PV and MF) have many features in common including their molecular origins and symptoms.

Common symptoms such as fatigue, night sweats, fever, bone pain and itching, as well as an increased chance of developing thrombosis, bleeding, and leukaemia will be seen in all three diseases. Also the three MPNs may transform over time from one type to another; most often ET to PV or ET and PV to MF.

The molecular cause that MPNs have in common is the increase in activity of a cell signaling pathway known as the JAK/STATpathway, this causes enhanced cell division and therefore increases the number of blood cells. This cell signaling abnormality is due to over activity of JAK2 (Janus kinase 2), in most patients caused by a V617F mutation in the JAK2 gene. Very recently, a mutation in the CALR gene was found to be associated with JAK2-negative ET and MF.

Learn more at https://www.mpn-advocates.net/

What is Myeloma

September is blood cancer awareness month so I thought it would be nice to share a few facts throughout the month. 

WHAT IS MYELOMA?

Multiple myeloma, commonly referred to as myeloma, is a blood cancer that is associated with the abnormal behavior and uncontrolled growth of a type of white blood cell – the plasma cell. Plasma cells are made in the bone marrow – the spongy tissue found inside bones – and are an important component of the body’s immune system because they produce antibodies. In myeloma, abnormal plasma cells (also known as myeloma cells) interfere with the production of normal healthy blood cells in the bone marrow and overproduce inactive clones of abnormal antibodies that can negatively affect different parts of the body such as the bones and kidneys. The cause or causes of myeloma remain unknown.

Every day, 9 Canadians are diagnosed with myeloma, yet in spite of its growing prevalence, the disease remains relatively unknown. To date there is no cure for myeloma, however advancements in research and treatment are enabling those impacted by myeloma to live better and longer lives than ever before. More research leading to new therapies or new combinations of therapies are required to find a cure.

You can learn more at https://www.myeloma.ca/en

September 4th is World Leukemia Day

Please check the link below to learn more about what it is all about!

https://www.worldleukemiaday.org/about-world-leukemia-day

September is Blood Cancer Awareness Month

I thought it would be nice to share a few facts throughout the month. 

                              

DID YOU KNOW………

There are 137 types of blood cancers and related disorders. These cancers involve blood cells, the bone marrow, the lymph nodes and other parts of the lymphatic system. The main types of blood cancers include:

Leukemia

Hodgkin and non-Hodgkin lymphoma

Myeloma

Other, less common, blood cancers, such as myelodysplastic syndromes and myeloproliferative neoplasms.

  

Why did I choose this name and logo?

Seems a bit strange to use the word lucky when talking about leukemia, or any type of cancer for that matter. 

So why did I choose this name and logo?

When I was first diagnosed with Chronic Myeloid Leukemia (CML) I was being booked in a for a few more tests when the nurse said to me, "Well if this is the type of cancer you have, you are lucky, it's just like having diabetes". Now, I am sure her intentions were good, but personally, it did not come across very well and I think that way of thinking within the medical field needs to change! 

I'll have more to say about this in future posts!

As for the logo, my inspiration came from a description I found online about the symbolism of the hummingbird. Reading it really made sense. That was also the inspiration for a tattoo I decided to get on my wrist which closely resembles my logo.