I was unofficially (by lab results) diagnosed with CML in October while standing in line at Costco on a Sunday afternoon. A hematologist called me and said based on your latest lab results, you have CML Leukemia. I looked at my wife with pure horror and she knew something was wrong. When I told her, we were the only two people left in the store in our minds as we were holding each other and crying. I guess in my mind from my own experience with past family members that once you get a leukemia diagnosis, you get a death sentence. I didn't know that there are meds out there that can let you have a somewhat normal life. Flash forward to now after going through a bone marrow biopsy, ultrasound, two ekg's and countless blood draws, I started Sprycel a couple weeks ago which my onc doctor recommended. I have a few things happening since starting this which I think are to be expected but will discuss with my doctor when I see her next month. Overall, I'm still just as sad, scared and mad as I was when learning of this but I guess it's better than the alternative. I know there is hope and it definitely could have been way worse. I'm glad I found this site.
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That’s a shitty way to find out, but I guess none of us had a particularly good experience through our diagnosis.
Read. Read. Read. When you educate yourself you will learn how far CML treatment has come. The videos section on this site is really good, so have a watch there. Post any questions you have here. We have lots of patient experts. Buy a copy of “The Philadelphia Chromosome” on Amazon - you will learn a lot and it’s a good read to understand the history of the disease and why, if nothing else, your timing is pretty good.
Two things to remember:
- The majority of CML patients who are doing really well are just getting on with their lives and not posting online about it. Remember that when you read online, you are almost exclusively reading about the harder cases. People getting on with their life tend not to post about it online.
- TKIs, such as dasatinib, work really well for most people. They don’t for some, but even then there are alternatives. You have cancer - can’t avoid that - but you have excellent and many treatment options.
Above all, remember this: you are vastly more likely to die with CML at a “normal” age than from CML.
BTW, life ahead of you should not be “somewhat normal” (is there such a thing?!) it will hopefully be your own normal as it was before.
Your story sounds so much like ours! My husband had bloods taken ( last month) on the Tuesday at 430pm. Wednesday morning he was at work when he received a call from the pathologist to say he had leukemia. He rang me at home and told me and I thought no he must have misheard it can't be? I picked him up and he rang his GP who also said yes it's looking like leukemia, at that moment we both burst into tears and held each other. I took him straight to emergency where the triage nurse asked if anyone had discussed his blood results with us to which we responded yes. They took him straight through and within two hours we had the oncologist come do a bone marrow biopsy and tell us he was certain it was CML and that it is very treatable with medication that he would have to take every day and for us not to worry. We were in a complete state of shock and disbelief. It's so traumatic to go through and I really feel for you and your wife. While hubby was in hospital the nights became so long, what to tell the kids and so on was playing on my mind. I spent endless hours searching the internet and came across this site and it was an instant source of information about what we would be dealing with and a much needed support for me as I was so in need and so upset. Without this site I don't think I would have coped as well as I have and my hubby has benefited enormously through what I have discovered and been able to relay to him. We are now 4 weeks into this journey and taking every day as it comes. He is doing well and we are in a much better place than a few weeks ago and much of that is due to this site and the wonderful people here and their valuable input. So my advice as a new member here is use this space to ask questions and help with any worries you may have etc. Read the forums, use the search bar and educate yourself as I have these past few weeks. It was a very scary time for us last month but now we know more about CML we are much more comfortable and the initial fear has subsided now we know the bigger picture and how best to support each other through this.
It’s all just a massive shock isn’t it?
Please have a watch of this video. This is specifically about me (voices changed, I don’t actually sound like that!).
A big difference between that video and my life now is that I said then I was hoping I could one day start a family. We achieved that, doubly so (twins!) which has been wonderful. My little girls are the light of my life.
I’m not saying CML is a walk in the park. It’s not. But life goes on and CML sure as fuck doesn’t define it any more. I would never have believed the words I’m telling you now to myself at diagnosis. There are outliers, I won’t lie, but the chances are that it’ll all be OK. Not the same, but OK.
Thank you so much for that. It’s so hard not to let this and the medication define who I am now. Especially when only just a few short months ago, I was extremely active and in great physical shape. I’ll just have to get used to the new me and live for my new life instead of this defining me. Thank you for your kind words and God bless you and your husband along your journey with CML.
Thanks for the link to your story it is hard to think that one day we will look back and not think so much of the turmoil we went through following diagnosis and the dark place we have been these past few weeks. But as hours turn into days and days turn into weeks we are beginning to feel much better and are getting used to our new "normal".
The only way I can describe it, is it's like everything has changed but it's still the same. My husband is back at work and playing squash, we have our normal routines with the kids. People would look at him and not even know he has leukemia. But, everything HAS changed. I can only go a few days without breaking down in tears, little things can set me off. I have never felt so fearful in all my life and I'm in absolute awe of how my husband has dealt with things these past few weeks.
As we are very much at the start of our CML journey it is constantly on our minds. How well will he respond to treatment? How bad will the side effects be on his body? How can I best support him and what he is going through, physically, mentally and emotionally? I know the future ahead will not be a walk in the park, but I am very much looking forward to life going on and it not being at the forefront of our minds each and every single day. One day at a time I know we'll get there, as did you and your wife.
It is so wonderful to know of the double blessing you were both gifted along the way!
It is hard to accept that life a few months ago was relatively normal. We never thought we would have to face what we have just experienced this past month. However, we will remain positive and get used to living life with CML and take each day at a time. Take comfort in knowing that this group will help us through the challenges we face and provide us with much needed support along the way.
Wishing you and your wife all the very best.
How are you traveling with your CML now? Haven't been on here for a while, so thought I'd check in! It's a scary time for everyone atm with Covid19 around. My husband is going well. Results have been excellent on Nilotinib and his BCR-ABL was 0.17 in March down from 46 when first diagnosed in October last year, so we are very excited about this! Hope you're doing well and keeping safe.
All the best,