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Diagnosed with CML - feeling overwhelmed

Hello,

I hope you don't mind a post about feeling scared.  

I was diagnosed in December last year and started Imatinib about 7 weeks ago.  Up to now, I have felt fine. Not many side effects etc.  But I think the diagnosis has just hit me.  I feel overwhelmed by it.  I'm scared and feeling so shaky.  Did anyone else go through this?

My Dr is good - he tells me that CML can be relatively well controlled but it will almost certainly stay with me for the rest of my life - which I now find terrifying.

I'm sorry for the meaningless rant but this feeling started yesterday and I cannot shake it off. 

Would be grateful for any reassurance right now :-(

Thanks

R

HI Rae,

I was diagnosed last year also. It's perfectly normal to fell overwhelmed, sad, having been dealt this card can seem very unfair and tragic. All of us sent a first post asking for reassurance on this wonderful forum. Mine was very melodramatic hahaha  It took me a few months to adjust and deal with the news properly. This website has people that have had CML for decades and are very healthy, they met partners, conceived , got older, and advanced their carreers if you care for that sort of thing. On this forum people like to say you'll probably die from something else.

Take as much time as you need  to process this. I personnaly think that CML will likely hurt more psychologically than physically, your ability to live despite knowing you have cancer will decide your quality of life. I'm at the point where I understand and accept that I'm no worse off than a diabetic patient that has to take a medication everyday to control his condition.  I can  now spend a whole 24h without thinking about it. Still a process tough . You'll get there as  humans we are very adaptive. 

Hang in there!

Thank you Zaccar

I've spent some time reading the forum and everyone's shared experiences - this is an excellent resource.  I really do appreciate your response and for taking the time to pass on some reassurance to me.  I can see that it's going to be a bumpy ride for the first couple of years - and I hate blood tests! haha

Thanks again,

Rae

 

Hi Rae,

Allow yourself to feel scared- it's normal to feel like this especially so early on from your diagnosis. You are really at an early stage and one thing that helped me when I was first diagnosed was to share my feelings with others - mainly via online forums like this. That was in 1999, and I am still here and still doing well. My diagnosis changed my (and my families) life certainly, but we humans are survivors, we just need to reach out and ask for help.... you can do that here.

Sandy

Thank you Sandy - I really appreciate your insight.  It really is helpful to know that there is life beyond the initial diagnosis.  

I appreciate this website forum more than I can say - it has been a tremendous help already.

Thanks again

R

 

Just a thought here.  You sound a lot like me, back when I started Gleevec (imatinib).  The shakiness, sadness, fear, general not-greatness.  I, too, looked to an emotional answer, as did my then-onc.  With the perspective of a LOT of time (this was in 2009) and experience, a different doctor and drug, I just want to posit that it might just be the imatinib.  There is an extremely small risk of depression on imatinib, but it happened to me, most definitely.  I gave Gleevec the old college try for 2 years and I never had a happy moment from the first pill.  I was driven to psychotherapy, which among other helpful things, gave me the perspective necessary to change doctors and drugs.  When I switched to Sprycel, not all my troubles were over, but just about!  The clinical depression lifted and stayed away.  I was no longer physically miserable.  I'm not telling you to switch meds or doctors, and there are MANY people who have had the exact OPPOSITE experience with imatinib and dasatinib.  I'm just giving you a possible.  It's just that your post sounded like I could have written it c.2009-10.

Hi Rae, as Kat73 said, it may be Imatinib related, but consider the following: 

When you say the diagnosis hit you it sounds your mind has learned a new stimulus, a negative one, and got attached to it. Take a look at the concept of Learned Helplessness:

"When people feel that they have no control over their situation, they may begin to behave in a helpless manner. This inaction can lead people to overlook opportunities for relief or change."

The danger of learned helplessness is when you crave the negative stimulus. It is a stimulus nonetheless.

There is a movie called Memento, by Christopher Nolan, where the main character doesn't want closure to his suffering because he likes the stimulus it brings. You might like this movie if you haven't watched it already.

There is also a quote that can be applied to this situation, unrelated to the above:

"Life is 10% what happens to you and 90% how you react to it."

Best,