Exciting News!

So I have some exciting news….

 

I am PCRU!!!

 

I know you are thinking, “What the French toast is PCRU?” Well let me explain, it’s good! Real good! Being PCRU is the CML version of being in remission. In CML terms, it’s called a ‘response’ and not remission because remission can imply cure, or cancer free. There is currently no cure for CML. However, there is treatment via a drug therapy and this drug therapy, if it works right, should allow me to live a long, ‘normal’ life. The goal of this drug therapy is to gain maximum response which halts disease progression and puts the disease into a continuous state of very low level chronic stage CML.

When you have CML, you begin taking a daily drug therapy and the goal is to achieve different levels of ‘response’.

Complete Hematological Response

The first level of response you want to achieve is a Complete Hematological Response, or CHR.  CML (chronic myelogenous leukemia) is a cancer of the blood. What happens when you have CML is one of the chromosomes in your body mutates and becomes a new chromosome, and they call this new chromosome the Philadelphia Chromosome. This new chromosome creates a new gene, BCR-ABL. This new gene causes certain blood cells to grow out of control, and causes the diseased white blood cells to not to grow or die like normal cells. They just build up and damage the bone marrow. Your white blood cells fight disease. Your white blood cell count should be between 4,000-8,000. When I was diagnosed with CML, my white cell count was in the 30,000s. CML also increases your blood platelets. If you have too few platelets, you risk bleeding to death. If you have too many platelets, you risk having a stroke or heart attack. You should have between 150,000 – 350,000 platelets. When I was diagnosed with CML, my platelet count was over 1 million. I was taking an aspirin every day because I was at risk for having a heart attack. Within a couple of months of starting my medication, my numbers dropped, which is good, but they dropped too low. Even today my numbers are still slightly low, but they are consistent and the doctor is happy about that so I’m happy about that which means I have achieved a Complete Hematological Response. Wahoo!

Complete Molecular Response

The next big level of response (and ultimate goal) is to achieve a Complete Molecular Response (CMR). CMR is when the PCR is negative/undetectable (PCRU). PCR (polymerase chain reaction) is the testing method used to monitor leukemic levels in CML patients. The smaller the PCR number, the better because it means the fewer leukemic cells in the body.  

When the leukemia was discovered, the first PCR test was around 10%. That meant about 10% of the blood cells in my body were leukemic. That’s a really low number. Reason being, we know we caught it very early. The goal was to be PCRU within a year. Within three months of stating treatment, my PCR went from 10% to 0.214%. While that may seem great, it still means that leukemic cells were still being produced in my body. I just went for my 6 month checkup and after being on treatment for 6 months; my PCR is 0, or negative. That means no leukemic cells in my body can be detected! I am PCRU!

So what does that mean?

 Only about 5% of CML patients ever reach zero, or PCRU. Furthermore, studies have shown that if a person responds well and quickly to drug therapy, there is only a small chance of progression into later stages.  That is the biggest relief to me.  When you find out you have cancer, you feel like you don’t know your body any more. Anytime I have slight sign of an illness or a weird rash, bump, or mark on my body, in the back of my mind, I can’t help but think “is it spreading?” I don’t know what’s normal anymore. But now that I have proof that my medication has this under control, it’s a huge relief!

What it doesn’t mean…

Unfortunately, as exciting as this is, I still have leukemia, I still have CML. It’s something I’ll always have to deal with, always have to monitor, and always have to take drug therapy for. The last part of that statement is the’ ugh’ part. The leukemia itself doesn’t make me sick, it’s the drug therapy that I have to take every day that does. However, I will say, after being on it for 6 months, I can definitely tell my body is starting to get used to it. I still have the Princess Fiona effect every  morning (which even my doctor noticed at my last visit), I still get extremely exhausted at times, I still have anxiety, and I still wake up some nights hugging the toilet and revisiting what I ate last. BUT, it’s getting better. It’s been a lifestyle change. I drink more water, I get more rest, and as much as I hate it sometimes, I don’t overdo it like I used to. I have also learned what I can and can’t eat. My nights/mornings are the worst, but they aren’t like they used to be. I’ve learned that I need to take my medication on a completely full stomach. I tried taking it after eating a bowl of cereal once. That didn’t work out well. I’ve also learned I can’t eat really greasy foods. I once took my medication after eating meatloaf and that didn’t work out well either. Also, apparently I’m the only CML patient who can’t eat watermelon. When I do, you’ll find me curled up in a ball on a bed because I feel like the life just got sucked out. And that makes me sad because I love watermelon. :( I can honestly say that the hardest part of this journey has been the control part, or lack thereof. But I’m adapting, and it’s working. I’m feeling better, and according to my mom, I’m finally filling back out. Thanks mom. That’s what every girl wants to hear. :) In her defense, she is right. After my appendix surgery and through the process of being diagnosed with CML, my weight dropped down to the mid-90s. I hadn’t been that little since middle school. I’m now back to my normal weight of 105. What can I say, I do love food. :) 

Where do I go from here?

Well, at this point, all we do is monitor. I continue to take the drug therapy every day and continue to test every 6 months. And hopefully, every 6 months, the results will come back the same:: PCRU. It is said that if I can remain at PCRU for the next two years, then the chances of it progressing decrease drastically. This is why they advise women, even though it’s not advised at all, but women with CML who want to have children, to wait until 2 years after they are PCRU, because a woman with CML can’t be on any type of drug therapy while pregnant as it can cause birth defects. So if all goes well, in two years I can have more kids. But first I need to find a husband, but that’s another story for another day. … :) Soon I will have another bone marrow biopsy to test my bone marrow to see if anything has changed. After my first experience with that gigantic needle and grinding of my hip bone, it’s safe to say I am NOT looking forward to that, but I have at least 6 months before I have to worry about it.

But even with the good news, there will still always be some concerns in the back of my mind. There is still a chance that the medication will stop working, there is a chance that my CML will resist the medication, and there is still a risk for long term side effects. This medication has only been around for a little over 10years. But the best part of that is I have other options. There are other types of treatment to include different types of drug therapy, and worst case scenario, a bone marrow transplant.

 With all of that being said, I am feeling pretty blessed today. When this journey began last summer, even though I was scared, I remained hopeful, and today, I still remain hopeful. As each checkup passes, I feel more and more confident that I really will get to live a long, ‘normal’ life.

Thank you to everyone who has continued to pray for me.

 

Last but not least, this is for you, watermelon :

 

Goodbye my love...

 

 

To catch up on my CML journey, click here.