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Hello all, diagnosed with CML July 2017. Unfortunately was misdiagnosed with a platelet problem (essential thrombocythosis) 7 years ago which upon further testing of old bone marrow shows I've had cml since June 2011. I had been on hydroxyeurea since 2011 for this wrong diagnosis. Since July last year I was on and off a low dose of imatinib/gleevec for 2 months. It sent my platelets and wbc crashing so they stopped treatment. I started on nilotinib/tasigna since October again on and off in total 6 weeks at 300mg/ then 150mg daily. Again it sent my wbc and platelets crasing despite also taking platelet making drugs. Ended up in hospital for 5 weeks over Christmas, neutrophenic and Was diagnosed with acute aortic vasculitis. Restarted nilotinib alternate days at 150mg, again I'm crashing.

Consultant wants to break treatment till my blood count comes back up and then start me on bosutinib.

I am dreading another tki not working. At the end of my tether.. Any advice or people with same problems?

Hi Jane, 

I'm sorry to hear you've had a rough time - it sounds like it's taken a long time to get the correct diagnosis for you.

It sounds really unusual to go 7 years with CML, treated only with hydroxyurea - has a PCR test been done recently and do you know what the result was? Also, I presume you have stopped taking hydroxyurea now, right?

Where are you being seen? Hopefully somewhere with deep expertise in CML.

David.

So sorry for your problems - you've had it rougher than most of us. Has your doc suggested dasatinib?  All the TKI's can cause myelosuppression, but we all react differently to them.  You still have options - keep hope and listen to those on this site - a lot of wisdom and experience here.  There's a gal named Melanie who's had terrible myelosuppression.  I think she is on bosutinib and an experimental drub that helps increase her platelets.  Good luck

I second the suggestion that you should now be seeing some high level specialist in CML

If you're problems continue and you can get to Ireland, it may be worth your while to see Michel O Dwyer in Galway, he is a global specialist in CML. 

Hi Jane 

I am so sorry for the very rough time you are having and I feel guilty for complaining about my husband’s swollen eyes in another post. My husband’s oncologist has been very open and upfront with us about how little he really knows about CML , esp updates in research because it’s so rare and because he is treating so many patients with other diseases. So I would really recommend as others have done if possible you see a CML specialist. I know here in the States there are some CML experts  that will correspond with you by email be if you are a difficult case. Do you have someone who can support you and advocate on your behalf ? You must be so exhausted and sometimes it’s easier to be more assertive when you are fighting on behalf of someone other than yourself. 

Many of us who came over from the US site really trust the views of Trey who you will find on the CML community forum of the Leukemia Lymphoma Society , LLS.org and I would reach out to him there.  He is a patient expert with many years of experience  of CML. Let me know if you need help getting on as it’s not super user friendly. 

I can’t remember where I read it but I am sure that the drug you were on for 7 years can have some long term side effects and I wonder if that is why your platelets are so affected.

Best to you,

louise 

 

Jane, so sorry for what must seem like an endless roller coaster ride for you. Totally understand your fear of yet another TKI sending your numbers crashing again. I was on that same roller coaster for years and was headed towards transplant when I decided to try one last hope and seek out a CML specialist. I saw Dr Cortes at MD Anderson and was started on low dose Bosulif. Since I was already supplementing my wbc with Neupogen injections, we continued that course when needed along with transfusions for my Hbg. My platelets hadn’t been danger low yet at that point. With that treatment plan, I was finally able to get enough TKI in me long enough to start seeing my fish decline and eventually reached CCyR. My Hbg and wbc (anc) stabilized, still low, but needed no more transfusions and only occasionally the shots when my ANC’s dropped to.05 or below. Unfortunately, my platelets kept crashing. I was able to begin a clinical trial for CML patients with chronic low platelets, caused by TKIs. It took the highest dosage the trial allowed for it to maintain my platelets at 80-100, but it did. I’m now on the next to lowest dose and still maintaining 80-100 after 5 years. I’m on 400 mg Bosulif. My last PCR was .07. I feel both drugs were a miracle for me. Hopefully at my appointment next mont with Dr Cortes, I’ll be able to reduce both drugs. 

Hope my story helps you not to give up hope and to seek a specialist that’s able to pull from their vast experience and get you the help you need. 

Best to you!

Melanie

Hi Melanie B,

How are you doing? I am in US too and currently in almost the same situation. Had to stop Sprycel due to recurring low platelet and anc. Started gleevec. Platelets and anc keep on crashing. I am also thinking to see Dr Cortes at MD Anderson. Can you please tell me a little bit more specifics of the treatment plan that helped you to get through TKI?

Regards
Sid