Renee,
I remember vividly the day I was diagnosed. It followed a period of 'feeling dizzy with tingling in my arms and legs' (sound familiar?) along with a faster than normal heart beat that just got worse over time. Finally my wife convinced me to go to a cardiologist. He told me "nothing wrong with my heart, you need a blood test". I'll never forget how my wife broke down and cried when the hematologist told us I had leukemia. It was the most intense emotional and intellectual period of my life. As a scientist, I devoured the literature on CML 24/7.
You will never die from CML. It was caught and likely caught early. This is key and you need to let that sink in. You will never die from CML.
Also - CML likely extended your life. In other words, you have received a 'wake up call' about the fragility of our bodies and that we did and do take them for granted. Most of the time, our bodies just work. We tend to "feed" our bodies (and mind) what makes us feel good. And that's normal - but there is a lot we can do to help our bodies prevent disease before it even starts. We need to feed our bodies in a way that helps us heal on the inside.
Getting CML taught me a great deal about the most important function in our bodies - our immune system. And you would be surprised to learn that our daily habits do so much to impair our immune system that I am surprised more people are not diagnosed with cancer than are already.
Once you get a handle on your CML - and you will, you will begin to think a lot about your overall health.
David and other excellent members here will list some resources for you to read and learn on this forum. I will summarize a few key ideas for you to think about:
1. Your doctor is your advisor not your boss. You may find some of what you learn on this forum will not be what your doctor advises. Be mindful that your doctor may not be an expert researcher in the field. He/she is following guidelines. One size does not fit all - and you should track your progress in a personal way for you. This means that your sprycel dose may be too high if it is 100 mg. (headaches). We're learning that 50 mg is a better starting dose. If you find your blood counts falling too quickly (myelosuppression), you may need to have drug breaks and the re-start in order to manage your blood transition from cancer to normal. For many, this is normal and you will get through it. Over time, you will want to lower your dose as your CML gets under control. Less drug is better if less works.
1a. Let us know your blast cell percentage. Blast cells are how CML kills if not treated. Low or zero blast percentage means you are in chronic phase and this is the slow part of CML giving you time to get your drug dose personalized for you.
2. Your goal at this early stage is to track FISH tests which show percentage of CML cells under the microscope and your blood counts. You want FISH percent to go to zero. This should happen within 12 - 18 months. Some take longer some much faster and all with the same outcome (i.e. CML won't kill you). Over 95% progression free survival when FISH levels fall to zero. The other 5% die for other reasons - so do the math (i.e. CML won't kill you).
3. If Sprycel is going to work, you are going to know within a few months by a falling FISH. There are other drugs if it doesn't.
4. Get a vitamin D blood test. Chances are your blood level is low (many people have low vitamin D). There is NO case I know of where someone with high vitamin D (~60-80 ng/ml) was diagnosed with CML. None that I could find. After CML diagnosis, my vitamin D level was < 17 ng/ml. Now I keep my vitamin D level around 70 ng/ml. I test twice a year. Vitamin D is a T-cell activator. T-cells fight disease especially virus' AND help attack cancer cells including leukemia. It is not a cure - but probably would have been preventive if I knew before I was diagnosed. Also - once I increased my vitamin D (2013), I have not had a cold or flu since - NONE. And I use to get colds several times a year and dreaded flu season. No more (and no flu shot either). Also vitamin D enables blood cell differentiation including leukemic cells. This means that getting your vitamin D level into the high normal level will tend to keep CML in the chronic phase by causing leukemic blast cells to differentiate (into non-blast cells). Get your vitamin D level checked.
5. Take magnesium (400 mg) in the form of citrate or taurate. Sprycel (and the other TKI's) depletes our bodies of magnesium. This can lead to muscle aches (restless leg syndrome) and fatigue. By supplementing with magnesium, you may be able to avoid much of this right at the start. Also - magneisum is vital for heart health. Most people are magnesium deficient in the first place. Take half at night before sleep. Magnesium helps you relax and sleep much better. I am so glad CML taught me about magnesium.
6. Consider a high quality curcumin supplement. Research is mixed on the value of 2-8 grams of curcumin per day regarding cancer, but my reading revealed the fact that curcumin interferes with the gene pathways of CML (and other cancers too). Also - South Asian people (India) who have a diet rich in curcumin (turmeric) on average have lower rates of CML than in the west. That was enough for me to add curcumin. One BIG benefit of curcumin, my beginning arthritis disappeared. So Curcumin is good for you - whether one has CML or not.
7. You will never die from CML - so you are about to get this behind you and you will be healthier as a result.