platelet level as an indicator for hydroxyurea

[Debinuk]

My haematologist suggested that I go onto chemo tablets last year because of being over 60. I was reluctant because of side effects and so we compromised on Clopidogrel to reduce platelets. Has anyone else had the same experience? I wondered if age should be a factor for these strong medications or whether it should be platelet levels. (Platelet levels consistently approximately 600 for 7 years).

[hunter5582]

Age is used as a relevant risk factor for thrombosis, most commonly age > 60 or 65. It is a statistically valid risk indicator but does not take into account the differences in how people age. Some providers do not use age as the determining factor, looking at each individual's profile instead. This is not the most common practice. My MPN specialist was one who did not look solely at age to determine the need for cytoreduction. He said "65 is the new 35." I like that doc!

It is worth noting that there is not a linear relationship between platelet levels and risk of thrombosis. There is a direct relationship to risk of hemorrhage however. The higher the platelets, the higher the risk, particularly nearing or over 1,000. There are other risk factors to consider such as the specific driver mutation that you have, history of thrombosis/hemorrhage, co-occurring conditions, and more. This is best reviewed with a MPN Specialist who knows your specific case.

There are a number of options for cytoreduction if you determine the need. Hydroxycarbamide (AKA hydroxyurea - HU) and Pegasys (currently in short supply) are the two recognized first-line treatments for thrombocytosis whether from ET or PV. Besremi, another pegylated interferon, is also recognized as a preferred medication (FDA approved for PV) . There are more options as well as clinical trials. You are not limited to HU as the only choice. Some people tolerate HU and benefit, but not all. I am one of the latter. I was refractory to and intolerant of HU. I have done much better on the interferons (Pegasys then Besremi). Note that I did not start on the interferons solely based on age. The decision was based on actual symptoms and an individualized risk assessment.

Reducing risk of thrombosis is a core goal in treating ET/PV. Antiplatelet drugs like aspirin and clopidogrel are commonly used. Note that antiplatelet does not mean the drugs reduce the number of platelets. These drugs interfere with platelet aggregation, preventing thrombosis but increasing risk of hemorrhage.

So to answer your question, Yes - age is a factor to consider in deciding whether to engage in cytoreduction buyt it is not the only factor. There is also more than one choice if you decide to opt for cytoreduction. It is also important to consider the other MPN symptoms you may be experiencing as they can be more bothersome than the thrombosis risk.

Wishing you all the best.

[Debinuk in reply to hunter5582]

One of the problems I have had is exhaustion. I became anaemic and take iron supplements daily. I don’t know if this is a symptom or not?

[Dojojojo]

Like yourself, I questioned the one size fits all to start chemo pills at 60. I am triple negative and have no symptoms.The good folk here advised accessing a specialist for a more personalised plan.

My hematologist was really supportive and within a few weeks Guys Hospital took me on.

That was a few months ago and I am so impressed with the care and consideration I have been shown.

I had my first face to face 2 months ago and they immediately arranged for a second BMB (with a sedative which I wasn't offered for the first one) as they were not happy with the quality of the initial sample and a full CT body scan to eliminate any developing cancers being the reason for my high platelet levels.

I have my next appointment this Monday when all of the test results including a full reassessment of my gene panel will be discussed.

I should therefore come away with a personalised plan for the way forward now.

Thank you for the info you have posted , I will now ask about Clopidogrel which I have not heard of before.

I am so grateful to everyone here that share their experiences it has led to a much better understanding of what can be very scary when first diagnosed. I read everyone's posts every morning.

I will post back next week with consultants comments on Clopidogrel.

Keep well everyone.

[AndyT]

Increased risk of thrombosis over the age of 60 has definitely been used as a marker for considering treatment in ET for many years but often in combination with other risk factors that may or may not be present.

In my case it was reaching 60 and having rising platelets consistently over 1,000 that triggered the decision to bring my platelets down.

Some doctors also now feel that driver mutations are relevant, with less urgency to treat patients with the CALR mutation as that appears to have a lower risk of thrombosis, so long as other risk factors are low too - e.g. prior history of thrombosis or other conditions that raise the risk. Do you know which mutation, if any, you have?

I opted to start treatment as a precaution and have been on Pegasys, with no significant side effects, since 2015. I have the CALR mutation but back then it wasn’t differentiated for risk.

[Debinuk in reply to AndyT]

I also have the CALR mutation and have no history of thrombosis. I don’t know if I have symptoms or not - that may sound strange but despite telling doctors that overall I don’t feel particularly well, nothing is really taken on board. The consultant consistently asks the same questions at every meeting, usually asking if I have had any infections.

[AndyT in reply to Debinuk]

Symptoms can be difficult to assess, especially as so many of those associated with MPNs can be caused by other factors. Fatigue is definitely more of an issue for me now than it used to be but I was 47 when diagnosed and am now 68, so that probably has something to do with it too!

Have you tried using the MPN10 symptom tracker to record your symptoms and any changes in them? uk.mpn.your-symptom-questio...

[Bluetop]

I was just over 60 when diagnosed and was put straight onto hydroxy because of the statistics. I also take asprin.

[Debinuk in reply to Bluetop]

I took aspirin for about 3 years and started to have problems with my stomach (not good for the stomach lining). I had to stop the aspirin and the stomach problems never resolved.

[gilded]

Hello Debinuk. I was 79 when diagnosed with ET (CALR). My doctor prescribed Pegasys Interferon. When I last saw him and we discussed the worldwide shortage of interferon, he was very reluctant to alter the prescription to Hydox. I'm still on interferon but owing to shortage, I'm given just 2 packets at a time ( I month's supply)whereas before I used to get many more packets.

[Mishie14]

I was on low dose aspirin and clopidogrel for one year per cardio with hematology approval. Cardio said it was all about thinning blood, not reducing platelets. After the year, cardio stopped it and I have continued with low dose aspirin only to thin blood. For lowering platelets have been on IFN injections for last 18 months. What has changed is formerly very high platelets at nearly 1.4M at the start are now down to low 600k and steady. It’s my target. All of my cardio side effects have gone away. I firmly believe those effects were the result of taking hydroxyurea as first line drug for ET. It ruined my quality of life. I am very comfortable now with IFN and supplements. Please be careful with whatever platelet drug you may take. We react differently and the drugs are all different in how they manage platelets and with what side effects to do it.

[Debinuk in reply to Mishie14]

Very interesting about your dreadful side effects. Quality of life is key