Hydroxyurea

[dladydi]

Hi my name is Diane and I am 69 years old. I was diagnosed with PV jak 2 positive in January. My treatment so far has been phlebotomy and daily aspirin. After 4 treatments my platelets have risen from 506 to 526. Hemocrits are at .46 lymphocytes 1.2. Leukocytes are rising. I have a new doctor now and she wants me to go on hydroxurea. I am wondering if it is too soon. What would criteria be in blood levels to start take hydroxurea. I fear it is too early. Thanks in advance for any info you can give me.

[charl17]

The rule of thumb with jak2 pv is to keep hematocrit below 45 to prevent clots. Some believe that women should be below 42. That is the point of phlebotomies, hydroxyurea and the other option interferon. Most people on hydroxyurea tolerate it well. Phlebotomy will eventually make you iron-deficient and this has side effects. Your body treats phlebotomy as a wound and it can respond by increasing platelets and white blood cells.

I think this is a reasonable approach your doctor is taking. Be alert to signs of toxicity - skin cancers and lower leg wounds.

[dladydi in reply to charl17]

Thank you very much. I appreciate it.

[Indigo42916]

Yes, probably hematocrit, because when it is high it increases thrombosis risk. Elevated white cells can also increase this risk. You might want to consider Interferon, it is not chemo. It is not for everyone but it is showing impressive results for MPN's.

Take good care.

[dladydi in reply to Indigo42916]

Thank you very much. I appreciate it.

[Bluetop]

I am PV JAK2 positive and am 68. I was diagnosed 3 years ago. My platelets were higher than yours at 800+ , hematocrit 5 and red cells 5.9. Looking back at past blood results, these had been going up for a few years but it hadn't been picked up. After a couple of venesections during diagnosis, I went straight onto hydroxy. I am very lucky as I had virtually no symptoms before and only slight (mainly mouth ulcers) since. I have tolerated the hydroxy well and it has managed my blood well.However, as others have said, I suggest it would be worth a discussion about interferon. My understanding is that the pegylated interferon has reduced side effects compared with the earlier version, recent evaluations look good and it does not have the disadvantages of chemotherapy. Good luck.

[hunter5582]

Your platelets are relatively low. Minor fluctuation is not significant. Lower level Thrombocytosis alone is not where the highest risk for thrombosis is. It is when you add leukocytosis and/or erythrocytosis on top of the thrombocytosis that the risk goes up. However, the risks are not the same for everyone. Some people with PV are actually at higher risk for hemorrhage when their platelets go up. Recent research indicates this is more common than previously thought even at levels well below 1 million.

As others indicated keeping hemacrit below 45% is the critical number to manage. While some people can tolerate hydroxyurea as part of their tx not everyone can. I showed signs of HU toxicity even at very low doses. HU is a cytostatic med that inteferes with DNA activity, slowing it down. It slows down hemapoetic stem cell activity, which is why it can help. Unfortunately, it affects othrr cells too. It can also break allele strands and inhibit the DNA self-repair function. That is why it is considered to be a mutagen. It is also a carcinagen (skin and oral cancers) and is possibly leukemogenic (the latter is controversial). It is also immunosuppressant. There are other side effects too.

Having said all that, HU works fine for some. ALL of the chemos have risks. If you need one, evaluating the risks and benefits of each med is really important. HU is the oldest and cheapest. Many systems want you to try it first. Other options include peg-interferon and Jakafi. Both are more expensive, but may (or may not) be a better choice for you.

Sounds like you have time to carefully evaluate all of your options. In the absense of symptoms like thrombosis, it really pays to research and understand all of rhe potential choices.

All the best to you.

[wotan10]

Good morning and greetings from Fleetwood England.

When you evaluate the treatment options open to you it is much more positive to consider it from what knowledge you have.

You have not said what your back ground is and whether you have some understanding of your condition.

Your team are the best people to assist you.

Take care.

[Innessant]

Hi I am younger (M,62) with PV for ~5-6 years.I agree with Hunter. I manage the key hematocrit with venesections (several a year, which dont bother me) and aspirin. 100% normal lifestyle...keeping fit for me is best medicine.HU is a major decision. Why not wait a while and see how you feel without it?