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Why I’m I crying

Hi

Unsure where to start really, but I will try. I was told last May that I have CML and went on Imatinib Accord 400mg within a few days, luckily for me the count has come down from 131 to 0.012 to now. I chose not to talk about my CML to family members etc apart from my wife and two adult children but after getting positive news from my consultant regarding my treatment and blood results I have found now I’ve hit the wall as the last 3wks im crying when someone brings up words linked to my CML. 
I lost my dad 6yrs ago to Cancer and when he passed I had to stay strong for others but now it has really hit me too.
Can I seek help mentally with the above please.

Dean

Dean,

I so remember what it was like when I was first diagnosed with CML. My wife cried like I have never experienced before. I was simply stunned at first.

But there is very good news, Dean, that you should internalize and make part of your thinking. CML is no longer a death sentence like it was before the development of tyrosine kinase inhibitors. In fact, survival rates of people diagnosed with CML is well over 95% - and the remaining 5% die from other causes. The fact you are at 0.012 (I assume PCR percentage) means you will never die from CML.

Let that sink in. CML will not kill you. You have already beaten it.

Cancer is such a strong emotional word because we have long been conditioned to the notion of chemotherapy, illness and subsequent death. But not all cancers are the same. And this is especially true when the cancer in question is understood and a targeted treatment exists. Chronic myelogenous leukemia is well understood and has a very good treatment protocol. And there are things you can do to enhance your treatment so that over time you may be able to achieve a permanent remission without any drug.

The key here is to learn all you can. Apply what you learn and over time, living with CML will lead to less and less anxiety.

I had a tough time with CML back in May 2010 when I was diagnosed. I am now 'undetected' and for the last year I have not had any drug treatment and remain undetected. I live drug free and CML free. You can too. CML may have extended my life! I am much more aware of nutrition and health than I was before. My CML diagnosis uncovered other issues (all those blood tests) I never knew I had such as emerging heart disease. I have since corrected these issues. CML was a blessing in disguise.

To your health!

Hi Scuba

Thank you for replying and so encouraging words. Although I was told by the consultant back in May 2021 that it was treatable and not life threatening, I have always been a positive person and always pulled positives out of a negative. But the last 3wks I have found it very hard mentally and feel I may need help with this blip, I was told today from the haematology department that what I am now feeling is normal and a progress many people go through,

Your results now are both encouraging, fantastic and positive news and hope your health remains well. Many thanks again.

Dean 

Dean and Scuba. That is a great answer from Scuba and I’m glad it helps you, Dean. I have had a bit of whiplash since diagnosis almost exactly 5 years ago (April 7, 2017). First I thought I was certainly going to die. Then as I learned and used this website and listened to my doctor, and the WBC went down very quickly with Gleevec, I felt great but a bit confused. Then over time, as I wasn’t reaching Undetectable, I began to worry again. Then my most recent labs finally showed Undetectable, after 5 years. 

Thank goodness this disease is so easily treatable, but it does take your mind for a spin. It is really wonderful to have this website to visit again and again for support and information, and knowing others’ experiences — and to remind us, when we are afraid, that CML will not kill us.

Blessings to both of you, and to all of us with CML. We really are blessed.

Justine

 

 

Dean - I second everything said here so far.  I want to add to it.  First, yes indeed, seek mental/emotional help in the form of therapy.  It will help you, undoubtedly.  There are more things underneath the CML (as you suspect, with your dad's death) than you can figure out all by yourself.  It doesn't have to be forever, and it doesn't mean you're weak.  You might not think it's "working" for awhile.  But just talking to someone who's a pro (not a familly member you need to "protect") is very beneficial.  We are, indeed, in a weird place - not sick, not well - not in danger, but locked to a permanent therapy.  Anyway, not to go on and on, I would like to alert you to the possibility that the imatinib is, in itself, causing your mental outlook to change.  There is a very, very small percentage of depression with imatinib, but it happened to me.  I felt physically sick all the time (two years) I was on imatinib, and I certainly think it was all mixed up together.  Bottom line, one miserable polecat.  A switch to dasatinib changed all that, and very quickly.  Just a possibility to think about.  Let us know how you get on!    

I had a relatively easy time (mentally) with CML initally when i was diagnosed 6 years ago.

I guess my straight line recovery to MMR helped with that and my attitude was that it was a hiccup i needed to deal with to get in with me life.

I've recently gotten a small but detectable PCR test after a TfR attempt and its hit quite hard so i really feel the emotional struggles of this.

Therapy can be helpful but mindset change will be more useful. I was ok the first time because i was able to accept wjat happened more easily...it was no one's fault and actually i felt i got a lot of benefit (in a weird way, it freed me from a lot of expectations i had on myself).

Many thanks for your encouraging and kind words, hopefully with the counselling I can move on with a positive attitude. I’ve been on a Zoom support group which really helped but the emotions are still there but hay it’s all about small steps I suppose. 
Dean. 
 

Hey,

Few things can be more difficult than realizing that you don't know the right step to take, like this gentleman here who faced the reality of not knowing the "double step":

https://youtu.be/UUO5WPaIr-s

In all seriousness, I sympathize when you say "it's all about small steps". I would add that sometimes it's not just about taking steps but also learning to take them differently.

PS: The guy in the video ended up learning the double step, and so will you.