When did you start treatment?

[inlimbo123]

Hello all, thanks for taking the time to read this. I’ve been on watch and wait for 2 years now, without a formal diagnosis (my platelets have between 500-600) with some other minor blood counts out of range too.

After a stay in hospital due to my gallbladder, I had to do a blood test two weeks after being home to make sure my infection markers were down; everything was fine, except my platelets have jumped to 950. I told my haematologist and he said he’ll see me in 2 weeks as we already had an appointment then.

My question is, did anyone start treatment when their platelets were around 950? My GP seemed really concerned, but said to see what the haematologist recommends. Is it normal to continue on watch and wait with platelets this high, or in the grand scheme of things is it not a big deal?

Sorry for the ramble, if you can please advise I’d be so grateful! Kind regards x

[Pinktulips]

Hi, when I was first diagnosed, I was told to only start daily aspirin. We would start treatment once my platelets were over 1500, had a blood clot or reached 60 yrs old, whatever came first. A few months after my diagnosis I had a blood clot in my finger so we started on Hydro. I couldn’t tolerate is well so after 1.5 yrs we changed to Pegasys.

Hope all goes well with your appointment 😊

[Ebot]

Hi there.

Starting treatment is a really individual thing - much like the disease itself. It tends to depend on one, or a mix, of three things.

First, your platelet count - usually anything over 1500. Mine was 1700 when I started on Hydroxy. I’d held off as long as I could but at that point it became a no brainer.

Second, your age. 65 is the new 60! The current thought is your mid sixties is the point where your age alone makes you ‘high risk’.

Third, your general state of health and any history of thrombotic events.

There is also a fourth, which is the severity of any symptoms and the extent to which these might impact on your quality of life.

However, none of these are set in stone. They are simply markers around which to begin a conversation with your haematology team. (GPs on the whole, are not usually in the loop nor experts in this MPN game!) All the best.

[Lyndjs]

Good morning.

I have PV and I was offered treatment instantly with platelets around 600 and high iron , but I was told I could wait until I was 60 or my platelets raised to 800+ I was on low dose aspirin and venesection until my 60th birthday and now I have just been offered a choice of peginterferon or Hydroxycarbamide. Thanks to support from the forum I have chosen peginterferon. I went to start it yesterday but have an infection so need to wait.

My haematologist has previously said, some consultants go by age, platelets 800+ or platelets 1000+ before starting treatment.

I really hope you can get some help and support. I know once we start looking at numbers increasing, how worrying it is. I'm not at all medical and there's so much info on the Internet, it's not easy to navigate useful info. Fortunately you've found your way here and there's some great advice shared by people living it.

Please let me know how things go l, for you. Take care x

[ainslie]

I suppose the first thing to establish was your reading of 950 just due to the gall bladder issue, I would discuss that with docs before anything else. Most good haems tend not to treat platelets under 1000 or more unless symptomatic or other risk issues.

[Mabellucie]

My platelets were over 900 and Haematologist was very concerned and put me on Hydroxycarbamide and 1 Aspirin a day immediately to avoid risk of a stroke. I have to take these meds for the rest of my life and have regular blood tests now so they can check my platelet levels. Perhaps urgently see another Haematologist or MPN Specialist - I am searching an MPN Specialist out as want to find out more info if I can. I find the MPN videos very helpful on past seminars and am booked to go to one in December. Good luck x

[Solyesh]

I was on watch and wait (daily aspirin) as my platelets kept climbing form 650 to 70 to 850 to 900. My MPN specialist was fine with keeping me on the w&w protocol as I was <60; no history of thrombosis; and platelet were under 1,500. When they shot up from the 900/950 to 1,400 and I had bleeding at the gums he suggested that it was time to start cytoreduction.

[hunter5582]

I did aspirin and monitor for the better part of 25 years with ET, that later progressed into PV. My PLT typically cycled between 500s - 700s. I did occasionally see spikes into the 900s. This was always as a result of reactive thrombocytosis. Note that these spikes are the result of normal platelet function. With ET, one just has a higher starting point, thus a higher end point. What I always found is that when my platelets were over 800 I tended to see an increase in hemorrhage (bleeding and bruising).

If you had any kind of surgical procedure related to the gallbladder, that would certainly trigger reactive thrombocytosis. I always see a bump up in PLT after surgery. Note that inflammation, injury, bleeding and infection can all trigger reactive thrombocytosis.

For most people with low-risk ET, aspiring and monitor is the standard protocol. The benefits of cytoreduction only outweigh the risks when the actual symptoms or risk factors drive the need for cytoreduction. Your MPN care team can do the best job of giving you a case specific answer to your question about when to start more active treatment based on your MPN profile.

All the best moving forward.