Aspirin

[lyncd66]

Hi all just come back from seeing my hematologist , I was preparing myself to start hydroxycarbamide but he’s now decided to just carry on with aspirin as he thinks I’m too young for any other treatment (I’m 54) It is a relief but just wondering if anyone else was given this wait and see approach and if I possibly will be prescribed hydroxy in the future

[ggrana]

Hello, I’ve been on 1500 mg for over three years now and I’m only 50 years old but my platelets were 1.6 million and Pegasus did not reduce my count. And My mpn specialist checks my counts monthly here in New Jersey. Maybe your blood counts are not high enough where you need to go on it.

[nightshadow]

Look at the trajectory of the platelet count in your blood tests. If the trajectory is shallow staying on aspirin sounds like it might be enough, but if it is suddenly spiking then you might want to push for HU despite your age. When I was first diagnosed I had access to 5 years of data and it showed a sudden uptick in the platelet levels within a few month period, so even though my doctor also gave me the option for staying on aspirin I opted for the HU route instead. I am not sure that age is more important than the pattern of change in the platelet count.

A good doctor shouldn't be treating just the disease, but balancing overall health as well and starting a carcinogenic drug may not be the best choice if the platelets are simply not that high or looking to suddenly spike upwards.

[Jody00 in reply to nightshadow]

Hi am 42 years old I've been on aspirin since last year in march but my platelets at moment are on 692 been up down bit from last year Xx

[hunter5582]

I was diagnosed with ET 30 years ago. It progressed to V about 7 years ago. I spent almost all of that time on an aspirin-only protocol. I did use HU for three one year periods during spikes in thombocytosis. Unfortunately the last time I used it, I have become HU-intolerant. It is important to understand that while some people can tolerate HU and benefit from it, not everyone can. Do note that all of the meds used to treat MPNs have a risk/benefit profile. You have to evaluate each of your options, including aspirin-only to determine which option is best for you.

Typically, most docs would recommend PEGylated Interferon for patients who need cytoreduction with age<60, One of the reasons has to do with the risk of leukemic progression that accompanies long-term (more than 10 years) use.

It sounds like you hematologist is on the right track to be conservative with cytoreduction. In the absence of specific risk factors or symptoms, at age 54 aspirin-only would be the standard protocol and the safest option.

[JV4E]

Hello, I have had ET for 13 years and have been only on aspirin the entire time. I am 52. My Platelets are around 1100 -1200. My hospital has the view that if you are under 60 and the platelets are below 1.5 million and your other risk factors are well managed ( weight, diet, exercise, drinking, smoking etc) then it is best to be conservative with cytoreduction. My view is that If you start taking Hydroxy relatively young , you could be on it a very long time with the potential risks associated, so if it can safely be delayed then that suits me. Obviously it's your personal choice having considered all the risks/benefits and your own personal circumstances. Good luck on your ET Journey.

[Amethist]

I agree with JV4E. Better to be a little conservative with Rx. I am 54 too and just on aspirin, platelets were around 1300 on diagnosis 5 yrs ago. I only see my haem 1x yr and my last appt had raised platelets above 1500 so he wanted me to start treatment straight away. Instead, I went for a second opinion with an MPN specialist ( from the list) who said to just carry on as I was. She said high platelet numbers on their own don’t give you the whole story and as my other bloods were all normal, no symptoms, fit, healthy and physically active with sport, she wouldn’t consider cytoreductive drugs until age 65 at the earliest, regardless of platelet numbers.

[Minu6]

Hi, I’m 53, diagnosed last year and started on Hydroxycarbamide straight away. My platelets were around 900, but I had a blood clot 3 years ago, so have an extra risk factor. We all need to be treated individually, but be cautious about starting medication that, while it may reduce platelets, carries its own risks to our body x

[Solyesh]

I am 52, diagnosed officially, post BMB in December 2020 but dealing with high platelet numbers for about 7 years (north of 700 the entire time). I had been on aspirin only and annual CBC panels since 2014. After my BMB confirmed ET (Jak2+), my MPN specialist saw no reason to change the protocol and I remained on aspirin and watch. At my appointment last month, my count had shot up to 1,400 (from around 900 for the past year). He was still fine at that level maintaining aspirin only but I started having bleeding gums with every time I brushed my teeth (and not a little) so he said the combination pushed him toward cytoreduction (the spike over a 3 month period and the bleeding). I was very hesitant to begin as I am hopeful that still have a long runway ahead and not sure I want to be on a cytoreductive drug for 3 decades (or more...).

We went through all the options and I decided to start with HU - so far so good and it has already improved both the platelet count and the WBC count and I am managing well.

The best news is that we now have choices and Peg/Beresmi is available and maybe something new in the future.

It sounds like your hemotologist is following best practices with maintaining aspirin given your levels, good health and lack of other symptoms. As I said even at 1,400 my specialist would have been fine on aspirin only absent any other factors. He also said hemotologists tend to like "round numbers" (levels less than 1,500; 60/65 for cytoreduction; etc.) but that every patient is different with different realities and needs.

Best of luck!