CML – Leukemia Patient Stories

Apr 20, 2021 | Patient Blog

Being diagnosed with Chronic Myelogenous Leukemia (CML) can seem like an endless road with infinite steps. Luckily, for anyone battling leukemia, there is hope. 

CML, a type of leukemia that starts in blood-forming cells within bone marrow, is a rare cancer that affects around 9,110 people in 2021. 

Since the 1990s, the 5+ year survival rate has more than doubled and medication has advanced drastically. Throughout this blog, you’ll find everything you need to know about CML, including symptoms, leukemia patient stories, resources, and more.

cml

CML, Symptoms, and more

Some individuals may not show symptoms, so it’s important that everyone has regular cancer screenings. CML can be found during these screenings or from routine blood work.

Because symptoms of CML can be tied to other cancers or unrelated conditions, it’s important to consult your physician if you have any concerns about your health.

Symptoms of CML include: 

  • Weakness
  • Fatigue
  • Night sweats
  • Weight loss
  • Fever
  • Bone pain
  • An enlarged spleen (felt as a mass under the left side of the ribcage)
  • Pain or a sense of “fullness” in the belly
  • Feeling full after eating a small amount of food

Additionally, CML is typically diagnosed in people aged 65 or older and rarely affects children. 

There are 3 phases of CML: the chronic phase, the accelerated phase, and the blast phase. For more information on these phases, visit the Leukemia & Lymphoma Society

leukemia patient stories

CML Patient Stories

Uncle Bill

“4 years ago, my Uncle Bill was diagnosed with CML, a form of leukemia, and given a life expectancy of 5 years,” said Bill’s niece. 

“His treatment, thankfully, is a pill he takes daily. It affords him the chance to live a normal life. It makes it possible for him to travel to watch my children graduate from high school. This life-saving drug does come with a cost, $12,000 per month!” 

“Even with Medicare, this life-saving drug is too expensive. This is where PSI came in to save Uncle Bill’s life and is giving him the time to beat CML. PSI pays for this medication. My one wish is that PSI can continue saving Uncle Bill’s life so, in a few years, he can still be here to watch my son graduate from college!”

Letter from Ray

About 4 years ago, after having a yearly physical, my doctor requested I have blood work redone as there was a concern with one of the findings. An additional test indicated that I had a problem with my white blood cell count, which eventually led to being diagnosed with CML.

When my doctor gave me the diagnosis, he told me that there was no cure. But, there was a medication that in many cases stopped the progress of the disease and put patients into remission where they can live normal lives.

He said the medication was expensive and something I would need to take for the rest of my life. I asked how expensive and he said (4 years ago) $5,000 a month.

I then asked him, “What if I don’t do anything?” He said, “You will probably live around 3 more years but your quality of life will deteriorate as the cancer progresses.”

I told him I needed to think about it and discuss the situation with my family. I have Blue Cross Blue Shield health insurance and I also wanted to find out if the medication would be covered under my plan.

In talking to Blue Cross Blue Shield, they stated they would cover $2,800 and I would be responsible for the remainder. In discussions with my family, I told them that I was not going to bankrupt them so I could live longer.

During the follow-up visit with my doctor, I told him, “I guess I am going to die because there is no way I am going to bankrupt my family so I can live longer.” He asked, “Putting the financial aspect aside, would you be willing to move forward?” I said, “Of course! But how do we do that?” 

He then said they would contact the drug manufacturer who in turn found Patient Services, Inc., whose help I attribute to my being able to write this letter.

You see, that medication that cost $5,000 per month 4 years ago now costs over $11,000 per month for a generic equivalent!

I do not know how much more time I have to live (only God knows), but I do know that the medication has worked so well that the doctor has stated, “Ray whatever you’re doing, continue to do. If a doctor tested your blood today they would not know you have CML.”

*Uncle Bill’s story was originally published on April 3, 2019, and Ray’s story was originally published on April 11, 2018.*

cml support

Patient Services, Inc.

The financial burden of any chronic disease can be mammoth. Luckily, as a 501(c)(3) nonprofit organization, we provide financial assistance to patients battling specific diseases, one of which is CML.

If you’re struggling with the medical costs of CML, we encourage you to use our prescreening eligibility tool and apply for our assistance today. We are here to serve you. 

CML Resources 

Support is crucial to anyone battling CML. In addition to receiving help from friends and family, there are plenty of support groups to join. 

The Leukemia & Lymphoma Society offers a tool to find support groups, peer-to-peer support, and online chats for those battling blood cancers. Cancer Care also offers a free online support group that you can register for today. 

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