9 replies to this topic

[PJM]

Good Morning

 

I am new to this forum.  I was diagnosed with CML in April 2014 at City of Hope; Sokal high risk, englarged spleen, WBC of almost 500,000 and platelets over 1,000,000.  I was put on Tasigna, then Sprycel and now Iclusig.  My PCR at diagnosis was 146% and even though Tasigna and Sprycel brought my BCR-ABL down to as low as 30% it did not go any lower. Tasigna failed and I experienced also swelling of feet, hair loss, and increased liver toxocity.     My dr. changed me to ponatinib because the PCR while on Sprycel indicated 45%.  I am tolerating the ponatinib however dr. has increased the dosage from 15mg to 30mg because BCR-ABL  went up from 9.01 % to 12.26%.  Ponatinib is causing my blood counts to be very low; 1.7 WBC; platelets to 12,000, and Hemoglobin  8.1.  I have received weekly injections of neupogen and last week both a platelet and a blood transfusion.  I am frustrated and coming up on the 1 year of diagnosis and certainly worried about what my future holds. Anyone else experienced the same?? Any advice???

[scuba]

Good Morning

 

I am new to this forum.  I was diagnosed with CML in April 2014 at City of Hope; Sokal high risk, englarged spleen, WBC of almost 500,000 and platelets over 1,000,000.  I was put on Tasigna, then Sprycel and now Iclusig.  My PCR at diagnosis was 146% and even though Tasigna and Sprycel brought my BCR-ABL down to as low as 30% it did not go any lower. Tasigna failed and I experienced also swelling of feet, hair loss, and increased liver toxocity.     My dr. changed me to ponatinib because the PCR while on Sprycel indicated 45%.  I am tolerating the ponatinib however dr. has increased the dosage from 15mg to 30mg because BCR-ABL  went up from 9.01 % to 12.26%.  Ponatinib is causing my blood counts to be very low; 1.7 WBC; platelets to 12,000, and Hemoglobin  8.1.  I have received weekly injections of neupogen and last week both a platelet and a blood transfusion.  I am frustrated and coming up on the 1 year of diagnosis and certainly worried about what my future holds. Anyone else experienced the same?? Any advice???

 

Get a mutation test done straight away. No need for the Onc's to guess - they can determine which drug would be best.

[PJM]

Thank you for your response.  I should have added that I have had two mutation tests and both came back negative for any detectable mutation. I have never missed a dose of any medication and I can tell that my dr. is baffled as well as to why I am not responding and why my blood counts are still so low.   

[scuba]

Interesting... I wonder if something in your diet is interfering with the TKI. For example - Ibuprofen (Advil) will markedly lessen the effect of Sprycel. As a result I stopped taking Advil long ago. There may be other factors interfering with your treatment. You might try taking your drug before bedtime several hours after you eat to let the drug work overnight.

 

In addition - have you had a bone marrow taken? A closer look at the cells might indicate something else going on in addition to the CML.

 

(and check your vitamin D level ... )

[PJM]

I had a BMB at diagnosis.  My vitamin D level is low so they have me taking 2,000 units daily.  I will try taking the medication right before bedtime so that there isn't a lot of food in me that might interfer although ponatinib can be taken with or without food.  One more thought, how does stress relate to a TKI working and has anyone pursued this issue?  In my case, my mother recently died, I have a daughter who is a senior in high school and will be off to college in the fall and my husband is undergoing prostate cancer surgery next week.  This in addition to my own battle with the fatigue and everything else associated with CML.  Stress impacts our bodies in many ways and is a known contributor to many diseases.  Just a thought....

[scuba]

If your vitamin D level is low, 2,000 IU's won't be enough to raise it quickly enough. Talk to your doctor about prescription level vitamin D.

 

I don't think much about stress causing this or that. Proper nutrition, exercise will do more to take care of stress (or more accurately - enable your body to take care of stress).

 

I drink wine - so maybe that's a stress reliever. Lots of wine.

[carrie]

Oh my, you certainly have a lot going on. My heart goes out to you. I know stress can do a lot to our bodies, but I am not sure if it can create everything you are experiencing. I am hoping things get better for you....saying a little prayer that some good news comes your way and that you will start responding to the TKI you are currently taking. Take care and keep posting, it helps to talk with others experiencing something similar.

[Trey]

It is a difficult road you are on.  But we have seen several others in your situation.  Your initial WBC of 500K and PCR 146% were quite high, suggesting a later diagnosis.  

 

The key is, I believe, that you are still early in drug therapy (not yet at the one year mark).  Although most do well on drug therapy, under a year the progress can be erratic for some.  Changing TKI drugs can be useful, but if that does not work it can simply be a matter of drug uptake.  Sometimes the low counts prevent higher dosage.  Sometimes additional time is the only way to make progress.  For some it is quick, for others very slow.  The reasons are not all known.

 

If the issue is low drug uptake, the person should look at whether they take any other drugs (ibuprofen, PPI, or anything at all -- please list any other drugs).

 

A later diagnosis can be an issue.  If the CML progresses, it can gain certain advantages,  How much is not always identifiable. 

 

Did your BMB suggest any high risk factors?  Was a Flow Cytometry done? 

 

There are some clinical trials which might be useful, such as combination drug therapies. 

 

Any additional information you can provide might help us give some better insights.

[PJM]

The initial BMB confirmed CML because prior to that point the dr. in the emergency room, not at City of Hope, thought I was acute possibly going into blast crisis.  The BMB in April 2014 done at City of Hope showed 2% blasts. I should add that I went to see my regular doctor and she thought I was suffering from diverticulitis and I was on two antibiotics for 2 weeks.  It  was only after a blood test to find out additional information because my condition was not improving that I was sent to the ER because my blood counts were abnormally high.    Retrospectively, I did have classic CML symptoms:  night sweets, weight loss and an enlarged spleen.

 

I have wondered if I was diagnosed late in the game and there are studies that I have researched that indicate a poor response and difficulty if not impossibility of ever reaching MMR for people like me.   Flow Cytometry was done but from what I can ascertain on the report it did not reveal anything unusual. 

 

My dr. increased the ponatinib to 30 mg and will do another PCR at the end of March.  If the numbers are not down, he says will consider switching me to Bosulif. I seem to be running out of options.  City of Hope is a major cancer center that treats CML so I believe and I getting good care but I am frustrated with my results. It is impacting my life and not in a good way.

[Trey]

Generally patients can respond to TKI drugs unless the CML has morphed into an aggressive state.  But the only real way to know is to see how the TKI drug response goes.

 

Let us know what the next PCR shows.  Hope things will go better for you.