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Just venting / BMB

I have my third BMB coming up on May 15th. I was diagnosed in August 0f 2018. This will be my THIRD...

I am a little nervous. I know what to expect, but it doesnt mean it gets easier. I am tired of getting blood draws all the time. Im tired of not having a definite treatment plan. Frustrated with my body. 

The bone pain has been INSANE this weekend. Is there anything at all that can lessen the pain itself? I am not on any TKI's at the moment. They have not been actively treating my CML. 

The upcoming biopsy, my oncologist will also be doing mutation testing. We are hoping to have more answers from that. My oncologist has also sent my case to Dr Druker himself to ask his opinion. I have a second opinion appointment coming up on June 3rd as well. 

I am trying my hardest to stay positive and focus on what my life is currently about. But I am still very scared and nervous.... 

 

Just wanted to vent a little. 

 

Thanks. -Sarah

Hi Sarah,

I'm sorry to hear about your bone pain.  I wish that I could offer some advice about that.

That's awesome that you're going to get some feedback from Dr. Druker!  Was that your oncologist's idea, or did you suggest it to them?

Are you still seeing your original oncologist?

Hopefully your platelets will be up this week and then maybe you can start back on a low dose of TKI.

Kirk

Sarah - I almost can't think of two things that exhaust the human spirit more than pain and uncertainty.  Uncertainty is a kind of fear, so I guess it's really pain and fear.  I've been following your story and it seems that your unusual course has confused the medical guys, and in turn, they haven't been able to communicate much to inform or reassure you.  So you've soldiered on in the dark on your own (with your spouse).  This makes me really sad for you.  But I think you're just about to finally get things settled into an explanation and a way forward will show itself.  So, so, so glad Dr. Druker is involved.  I think you're just about to turn a corner.  Who knows what will be decided, but at least you will know what's going on and can get going on what you need to do.  Things will get better!  HANG ON.