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Hi.  I am newly diagnosed (2 weeks ago) and now on Sprycel the past 4 days. It arrived on my birthday....I live in Princeton NJ and my doctor is at PennMedicine in Philadelphia.  

I ended up in the ER after feeling dizzy with tingling in my arms and legs while at work.  After my bloodwork showed WBC of 81, the doctor admitted me to the hospital. without  this site I do not know how I would have made it through that first night in the hospital. I have three daughters, and all I could think of was them losing their mother so early in life.  My husband stayed home with our daughters that first night, and I stayed up alone in my hospital room reading through the material and threads here.  The following day I had a bone marrow biopsy and FISH results came back a few days later.  

I cannot thank you enough for all of the support and guidance contained in this forum.  I am still terrified and break down at least once daily but slowly adjusting to this diagnosis.  My doctor is top notch, friends and family are amazing, and so far I have no side effects from Sprycel other than being exhausted with a manageable headache.  But I wonder if no side effects means no good effects either?  

I have a hundred questions about my PCR results but my doctor insists there is nothing of concern.  
 

anyway, thank you all again.

 

Renee 

 

 

 

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.

Hi scuba,

I cannot thank you enough for this response.  I  have read it ten times over already.    I started taking the supplements you suggested about a week ago after reading through your posts on here.  My blasts are only at 1% and I did discuss a lower dose with my Dr. but she is not willing to discuss until at least the one month mark and not seriously until 6 months.  My headaches have been pretty terrible the past few days but I’m also suffering from a cough/cold that’s keeping me up at night so maybe that is contributing.  I will bring it up again with her at my next visit.  
 

In hind site, I knew something was off with my health and had started to take small steps to feel better, eating only plants based diet, more exercise,more sleep,  etc.... in some ways this diagnosis makes complete sense to me.  I just thought I was run down and stressed because of very unbalanced work/family life.    I also agree that CML may save my life or at least give me hope for a new life with less stress and more self care.  If I want to be here for my daughters, I need to change the way I live and my priorities.   I’m off of work for the rest of the year and will focus on getting these meds to work.  
 

thank you again.  

and to add on to Scuba's sage advice, keep an eye on your B vitamin levels esp if you notice a sharp mood dip at any point.

Looks like you were diagnosed very early so you'll be fine!

 

You very well might have all kinds of weird blood results in the first few months, it doesnt matter, after the adjustment period is when you need to keep an eye on parameters. My platelets did very strange things for a while...and I had a sub par response to treatment at 3 months HOWEVER I had a really fast time to functional remission (8 months). Like Scuba said, you have a long life ahead and now you have extra reasons to take care of yourself in terms of diet, health and lifestyle...go you!!  I wrote a diary in my first year, if you think it will help, you are welcome to read it!

Thank you!  I have been stressing out over my test results and peppering my Dr with questions about change ESPECIALLY in platelets.  It’s so good to know that it’s normal for things to fluctuate.  I need to focus on the milestones.  It’s only been one week on sprycel, but I’m feeling pretty low the past few days.   The vitamin B check is a great suggestion.  I broke down in tears on the poor phlebotomist today for my blood draw, so need to watch that I’m not going dark.  

As others have said you’re going to be fine. We all completely understand your feelings, as much as accepting that you have CML a former deadly blood cancer, you have to accept you are lucky you have a cancer that will never kill you.

You will have days, weeks and months you are weaker mentally, and you will have the same where you are coping very well. You will ups and downs and initially more downs than ups. You’re going to get through this time as hard and as impossible as it may seem in this moment. I can completely relate to your feelings I was 37 when diagnosed and all I could think of was I am going to die and won’t get to see my baby girls grow up. That and leaving all those I care about behind.

20 months in I am close or at MMR (I was just shy 0.1% at 18 months). I was diagnosed with a wbc of 330, massive spleen, weight loss and in a very bad way. Today I am here I feel fit I finally sleep better and I am back at the gym putting my body through it’s paces. For me this was always going to be a mental and emotional battle and it’s something you will get stronger with. Give yourself lots of compassion and time to recover, be kind to yourself physically and mentally.

Hang in there, we are all in this thing together.

Alex

Alex

I really needed that.  Thank you so much for taking time out to write this.  I’ll read it over and over I’m sure :). I think accepting this is key.... and I’m trying, but I have to admit some days are harder than others.   I’m hanging on for another good day and plan to get some yoga in tomorrow.  That’ll help.  
 

Thank you again.  Your email was exactly what I needed to hear.  

You are more than welcome. When I was diagnosed I must have read about 20 self help books. The only thing that reliably gets me through day to day is mindfulness meditation and lots of selfish self care.

Physically you’re going to be fine. We have to watch our mental and emotional states too. All you can do is pop the pill exactly as prescribed and take timeout mentally to do you. Start doing things you enjoy, being with friends and loved ones. You will certainly learn who the “real” people are in your life now. 😉

As the saying goes “Accept the things you cannot change, courage to change the things you can and the wisdom to know the difference”

Again you’re going to be fine! I know that’s hard to accept after this news but you will be!

Alex

Tater1, I'm a decade in on this journey and I still vividly remember breaking down in tears with the phlebotomist!  It was about a month or so in - I had so many questions and I couldn't find the answers anywhere - I felt absolutely s--t physically and looked it too - and the onc (although very nice and competent) seemed to feel I was from Mars.  I am fascinated (and appalled) by the disconnect in the early days between patient and doctor regarding CML and TKI's.  Your story and mine, repeated endlessly and needlessly, as you will see from others here.  From the medical point of view, this is a slam dunk - after what they see most of their cancer patients suffering, and all we have to do is take a tiny pill - the magic of it must be glorious for the oncology establishment.  And yet, we do indeed suffer, in our way.  In fact, I think we suffer BECAUSE of the expected success.  We're supposed to carry on as if nothing has happened.  And to be grateful, to boot!  But something HAS happened, and it's "real" cancer.  

Anyway, I remember the phlebotomist didn't understand, either.  You'd think she would have seen this happen a lot, but no.  She was very kind, but she said, "Now, now, it can't be as bad as all that?"  I had no answer for that.  Just had to swallow the emotion.  Not the person to unload on.  But things do get better.  I became better informed, found a psychotherapist, changed doctors, changed TKI, found this site (and the LLS site).  Time helps.  Success against the CML helps, too (!!!)  You most probably will have success against the CML, you will learn how and when to change what you can change, you will come to accept the new normal of what you can't change.  And yes, you'll come, gradually, to real and true gratitude.  But it'll be awhile!

I found it hard to come to terms with early on, as well. I buried my head in books and scientific stuff to understand what was going on. Neither a good or a bad way, but it was my way of dealing with it. It's not for everyone but it was my way.

Here's a little video about me. It's not my voice, by the way. I sound nothing like that! And life has changed a lot since then, twin babies being the main difference!

https://cmlsupport.org.uk/videos/what-if-what-now-living-cml

David.

Wow that video is pretty spot on and sums pretty much my experience also! CML seems to be the wake up call we all needed. A harsh one, but a wake up call all the same!

Thanks for sharing that!

Alex

Hi kat73,

Yes, yes, all of what you said!  I asked my husband to read your response because it is so accurate to how I’m feeling.  Thank you so much.  I’ll come back to your words many times in the coming days.  It helps so much to feel less alone and to have some place to come where I feel understood.  

 

Believe it or not, this video comforted me in the hospital the night I was diagnosed. It must have been 3 am when I saw it and was able to put my phone down and sleep.  Thank you!

Thank YOU.  My best Christmas present, to know any words of mine have helped.

Wow, that’s amazing to hear. I have no idea how many people have seen that video but I’m really pleased to hear it gave you some comfort.

If you want to read about other CML patients stories, there’s a nice book too.

Faces of Courage and Hope: 16 Inspiring Stories of Patients with Chronic Myeloid Leukaemia

https://www.amazon.co.uk/dp/B01FKTND9U

My mug and my story is in that one too. I never really liked the title of the book, but I do like the contents.

David.