PV and CML?

[Jsb45]

I was diagnosed with PV, Jak 2+ several years ago. I have been here on MPN Voice for most of that time. I appreciate how everyone shares their experiences and now I have a new one to share!

My newest hematologist, MD Anderson Cancer Center where I live has been through several changes in Dr.s, is having me tested for Chronic Myeloid Leukemia, CML. I have a slightly elevated number of immature granulocytes 0.9% of my total white blood cell count and my Neutrophils are at the high end at 75%.

Have any of you had this concurrent diagnosis? What are the treatment options? I am currently on 500mg 5days a week and 1,000 mg 2 days a week of hydroxy and lately a venesection/phlebotomy every 8 weeks.

[cmc_ufl]

Testing for CML is usually part of the routine workup for diagnosing any MPN. CML is one of the BCR-ABL-positive MPNs, whereas ET, PV are BCR-ABL-negative. Testing for the BCR-ABL mutation is usually a step taken to confirm a diagnosis of ET or PV. I would be surprised if you hadn’t already been tested for this during your PV diagnosis.

Neutrophils go up for many reasons, as do immature granulocytes. Was your absolute count of neutrophils also high, or just the percent? When neutrophils go up, so do IG. What is important is the trend over time. Are your IG always high, or this a single finding? Usually, an increase in IG is transient.

Another common finding with CML is elevated basophils. Are your basos high?

[Jsb45 in reply to cmc_ufl]

CMC_UFLThanks for your response! Once my original hematologist/oncologist had my JAK2+ confirmation we stopped looking. We discussed a BMB but since there was very little to be gained from it I agreed that we didn't need to do it. And, no other tests.

My levels have really not changed over the last 3 years, there is minor variation between the readings but that is to be expected, nothing really weird. What has changed is I have had 4 different hematologists/oncologists over the last 2 years. And I turned 61 so now I am considered high risk and they want to see me monthly, we debated this heavily and I agreed to every 8 weeks. My levels are really stable.

I also have had to compromise between my GP and Oncologist, the GP says a full aspirin 320mg a day and the Oncologist says 81mg a day. So I do a full one and then a baby one and alternate!

[cmc_ufl in reply to Jsb45]

So your IG have been elevated, but stable, for 3 years?

Standard aspirin protocol for PV (or ET) is 80/81 mg aspirin daily. Keep in mind most GPs do not have much knowledge in treating MPNs since these are rare diseases. The same goes for most standard hematologists/oncologists. I recommend finding a MPN specialist hematologist to manage your care.

It is possible for MPNs, such as your PV, to transform/progress into other MPNs over time. Since CML is BCR-ABL positive, any association between these would be unusual, and likely unrelated. There are other MPNs besides CML that can cause elevated neutrophils and IG. If your PV is progressing, that is something that will need to be monitored closely.

[Jsb45 in reply to cmc_ufl]

Yes, IG has been 0.07 to 0.1 since June of 2017 never above 0.1. Part of the reason my GP wants the higher dose is the hiking I do at a higher altitude, above 8,000 feet and the stroke risk. All while trying to keep my heart rate under control. The GP told me that Dr.s argue about the efficacy of 81 or 320 mg daily AND they do!

[Meatloaf9]

Hi, I just came across this post because of the CML reference. I also have PV and have IG's of 1% and my neutrophils run over 70%. I am wondering if you have found out anything different in the 9 months since this post.

Wondering what your hematologists think about the elevated IG's, mine don't seem to think it means much?

Hope you are still doing well. Best to you.

[Jsb45 in reply to Meatloaf9]

I'm doing very good, thanks for asking.

in fact I have been able reduce my hydroxy. Praise God my hgb has stayed under 13 without phlebotomy. I need to stay under 13 to keep my hematocrit below 45%.

No BM biopsy.