8 replies to this topic

[PJM]

Good Morning

 

I am on my third TKI (Tasigna, Sprycel and now ponatinib). I was diagnosed with CML on 4/3/14.   My onc had me on ponatinib 15 mg beginning in January and switched me to 30 mg in March when my PCR went up slightly from 9% ( the lowest since diagnosis)  to 12.26%.  Most recent PCR is 10.8%.  Since the switch to 30 mg, I have had 6 platelet transfusions (transfused at 15,000 and under)  and 2 blood transfusions (transfused at 8,000 and under) in addition to 2x weekly neupogen injections (shots when white count is 2,500 and under).  The ponatinib is clearly raking havoc with my blood counts but my onc feels that lowering the BCR/ABL is the most important part of my treatment.  He will leave me at the same ponatinib level and repeat the PCR at the beginning of May.   This is so frustrating and I am at City of Hope 2x week for blood counts. OUCH!!    Onc says that if I don't respond favorably he will consider switching me to Bosutinib which means I am running out of options.  Onc told me on Friday not to be discouraged that some people just take longer than others to respond. Obviously, this is easier said that done especially since I have never missed a dose and I have no mutations.   Anyone else out there have such low blood counts and then finally responded to the treatment??? I know that the majority of people in this forum are undetectable but I am wondering about the rest of us who are not. 

[hannibellemo]

PJM,

 

I just read your posting history and, my, you have had a go of it this past year! I would be very surprised if most of us posting on here are undetectable. I was dxed in Dec. of 2008 and have been through Gleevec, liver toxicity. Switched to Sprycel where I gained MMR, but then developed a pleural effusion 2.5 years in. Lost MMR and almost CCyR while waiting for PE to resolve, then went back on Sprycel reduced dose (50mg) and regained MMR at about the 15 month mark. My last PCR was undetectable, but I don't expect it to hold because the threshold for this particular test was .006 and it is normally .001 at this lab. Still, I'm not complaining.

 

My point is many of us are late bloomers!  You have just had a more difficult time than most. Hang in there, you are doing the best you can do, the body will have to do the rest. When you are feeling discouraged please keep coming here to vent (or whine, as I like to say, and do).

[Lucas]

i think this is what you are looking for:

 

http://community.lls...l=+tedsey +pcru

[PJM]

Thank you for the encouragement and the great link to the post by Tedsey on her incredible journey through CML.  Clearly, CML is unpredictable. All of us are individuals and no one responds to a given TKI in the same way.   We are at war with CML; our bodies are fighting with the TKIs and the cancer is fighting us back.   I am a person not a statistic and my body will respond how it will - I just have to be patient and wait through this season of uncertainty. 

[hannibellemo]

i think this is what you are looking for:

 

http://community.lls...l=+tedsey +pcru

 

Teds,

 

If you are reading this...I don't know how I missed this post almost 2 years ago!!. Congratulations and mea culpa!

[Lucas]

You are welcome pjm. Tedsey is an inspiration for many of US!

[Tedsey]

Teds,

 

If you are reading this...I don't know how I missed this post almost 2 years ago!!. Congratulations and mea culpa!

OMG, I am almost famous!  Gee, wish it could be for some kind of great talent.  CML is hardly that.  LOL 

 

Anyway, PJM,

I feel your pain.  I so mean it.  I struggled with similar issues for about 2 years with things getting better into the 3rd.  At the time I was dx, (Nov. 2009), there were only three drugs to try (and Sprycel and Tasigna were still in trials).  I opted for Sprycel (after it became approved) because Gleevec was so hard on me (mostly hemorraging and severe anemia, and I had pancytopenia).  I thought that Tasigna is too close to Gleevec chemically.  It was tough.  I had a baby and a little toddler.  Anyway, almost 5.5 years later, I am still on a TKI and my counts, although still low, have improved enough to be somewhat low "normal" for a person dx with CML on a TKI.  Not all of us get to PCRU and stay there.  I hit it twice, and although small, I am usually detectable.  That is good enough for me.  It appears I have a bad case of CML or my cells don't take up the drug optimally.  Could be my samples are sent to a lab with the most senstive machinery on the planet (PCR).  I like to think that is why I am usually detectable.  Hee, hee.  Realistically, I think the PCRUs were because my blood samples sat too long before they were tested.  But I still like to dream that someday I will get there and stay there forever (that is, until CML is cured).

 

I pray life will become more normal for you soon.  Keep us posted how you are doing and what they are doing to you!  There are others who have had similar experiences.  You can always write to me or just post.  I had been through the gammet and I hope all of that is over forever.  There will be a way to control your CML.  It just takes time to figure it out.  Hang in there.  Do the best you can not to get too down.  It is really, horribly, rough, but you are not alone.

Tedsey 

[Pin]

Teds, I still remember that day now - I think I danced the happy dance for you, I was so excited to hear your news!

[Lucas]

Tedsey, you're famous here!! i remember when i told my story for the first time here and you came with sweet and kind words for me. it was kind of a relief for me. i also had/have some problems with low counts despite never had to stop treatment or lower my dose - i live with 3500-4500 wbc, and 95-100K platelets (last year i lived with 75-85K platelets) and a magic 14.3hb. I also failed gleevec. my pcr was 6% at 7 and a half months but my bma was 40% positive (don't ask me why). I had a mutation analysis and it came negative so i choose nilotinib because it's similiar to gleevec and i had zero side effects on gleevec. well, 3 and a half months into tasigna and i achieved CCyR (yiippiiiee) and my pcr was 0.04% (later i discovered that it get late to the lab. it took 72 hours to arrive and not the expected 48 hours. so my pcr was probably high). i had another pcr from another lab 1 month later but they did the qualitative instead of the quantitative. after, they said that they ran both tests in the same time and gave a number: bellow the detection limits (there was bcr-abl detectable but they couldn't gave a number because it was too low). now i'm waiting for my new result with fingers crossed. and just like to thank you, tedsey. you're an inspiration for many guys and girls here.