Anyone with similar numbers and not on hydroxybicarbimide

[Eoin]

Diagnosed with PV JAK2+ My numbers are hgb 20.3 hemocrotic 60 and platelets 500. I know everyone is different but I just wondered if anyone was similar to me and what there medical plan was. I'm 64 (can't believe it!) don't have PV symptoms and feel fit and well (I thought I was). I am fearful of starting hydroxy any advice would really appreciated.

[francesb]

Hi, your platelets are just above the top of the normal range so maybe your doctor doesn't think there's reason yet for Hydroxy? I'd say don't fear taking it, in my experience it does bring counts down and doesn't have horrible side effects unless on a very high dose. Good luck, Frances.

[HardwareHarry]

Hi Eoin. When I was diagnosed about 18 months ago, my numbers were similar to yours, though I was also suffering from a blood clot caused by the PV. I was 42 then.

My only treatment for the PV is through venesections. Since you have been diagnosed, have you been having regular blood tests and/or venesections? If so, have you started to see your blood levels change?

As I understand it, venesections are good at controlling your red cell counts, really for getting your hematocrit levels down, but they can also increase your platelet count. Because your counts are quite high across the board, I suspect they will want to treat you with a drug as well as, or probably largely as a replacement for venesections.

Have you discussed your concerns with your haematologist? They should be transparent with you about treatment options are open to you. HC is not the only drug available; there are others, all with their own benefits and side-effects.

If you feel that your consultant isn't prepared to have an open discussion around options then you should consider getting a second opinion, which you are entitled to. Of course it doesn't mean that they are wrong, there may be one particular treatment which is clinically expedient for your circumstances, but it's worth getting another expert view.

You don't mention where you live. If you are based in England and can travel, I can heartily recommend Professor Harrison at Guys Hospital in London for a second opinion. I'm sure others can suggest alternate specialists in other parts of the world.

Good luck. Remember that your treatment plan is your own, and that you have the right to steer it in whatever direction you see fit, however also remember that left untreated, the clinical outcomes for unmanaged PV are not particularly good. You need to have a specialist who will work with you to balance treatment with results.

Cheers, Paul.

[jane13]

Hi,

Good comments from Paul and Frances

Your haematocrit is high, so I'd be asking about the risk of stroke and similar events if this is not brought down.

I was in similar situation but 10+ years younger than u. I had my HCT controlled by venesection for several years while only my red cell count was a problem, and my consultant was not too bothered if it went up to 50 or 52 (most will work to 45). But anything over that would trigger a venesection. However, once my platelets started to rise too I was advised to go onto HU due to the risk of stroke; as Paul says, venesection is not a good way to control platelets as they replicate every few days and produce "sticky" versions which add to the stroke risk.

There are lots of threads here which tell u not to worry about taking HU so I won't replicate those, just say that for me the risk of stroke was higher and nastier than any side effects from HU.

Good luck

[Jacqx17]

Hi Eoin

Im 52 and have PV Jak2+

When I started on this PV journey 9 months ago, my levels were similar to yours, but I was suffering from fatigue and terrible headaches, and vision problems, which is one of the reasons I went to the gp in the first place.

Since then my medical plan is monthly Venesection to keep my hematocrit below 45, and daily mini aspirin. Platelets have risen slightly since starting but haematologist not worried, and doesn't think I need HU yet.

Glad you feel good, and don't have any symptoms.

Just make sure your bloods checked regularly and let your doctor know if you start getting symptoms of PV.

Jacqui😊

[Eoin in reply to Jacqx17]

Hi Jacque I really appreciate your reply. I'm still in shock re the whole thing and questioning everything! can you tell me what your platelet reading is and if you've been told what Number would trigger you being put on HU. I have been told it's 400 but as far as I can gather this varies from consultant to consultant and what history and physical condition you are in. I'm very wary of taking it if I'm marginal, I know the medical teams are doing there very best for us but it's just a scary process and just want to find out if there are variations in treatments in different parts of the country.

[Splb3317]

Hi Eoin,

I was diagnosed with PV Jak2+ almost 3 years ago at age 68 following a routine blood test for something else. My GP referred me to a haemotologist when my Hb was raised and my haematocrit was 57. In women, the hct should be under 45, and platelets ideally around 400. For the 1st 18 months, I just had regular venesections to bring the red count down. I've only been on Hydroxycarbamide for about the last 18 months and the venesections have stopped. I was put on the drug because of raised platelets. Like you, I felt well and had had no blood or heart problems, but age is a risk factor and my mum died of a stroke, (in her 80,s ), so I was happy to take medication when my platelets began to rise.

I have very regular appointments with my haemotologist and he alters the dose according to the latest blood test. I take only 3, 500 gram tablets a week, along with daily soluble Aspirin and Omeprazole to protect my stomach from the Aspirin. I also take an anti gout pill, as gout unfortunately came with the PV and can be a side effect of Hydroxy. I have no problems with the Hydroxy and am just so grateful that this illness was spotted before it gave me a stroke or other thrombosis type thing. I would just make sure that you receive regular check ups and ask about your blood results. As long as our numbers are kept in check, we have a normal life expectancy. Let us know how you get on.

With kindest regards, Sandra

[piggie50]

Hi Eion,

I was diagnosed with PV at the age of 52. I am now 63. I, like you had no symptoms, felt well and worked full time. ( although my blood levels showed otherwise) 12 months after diagnosis I lost my husband to lung cancer which was a very stressful time. I existed on venesections and aspirin initially then Clopidogrel until the age of 59. My consultant always talked to me about Hydroxicarbamide but I was very resistant at first. I think all professionals agree that the risk of clots and strokes increase with age. I agreed to start it at 59 when my platelets were in the region of 800/900. I started on one per day which I am still on, with a few tweaks up and down along the way. My platelets are now around the 250/300 mark. If my hematocrit goes above .45 I have a venesection which is now about once per year. I honestly feel no effects of the Hydroxicarbamide. I take it last thing at night with Clopidogrel and Lansoprazole ( perscribed as I had a stomach bleed on aspirin) I look on it as just taking any other pill, not chemo! I feel I have peace of mind. I would much rather take it then suffer a stroke or blood clot. The thought of suffering a stoke when I am in the house on my own scares me rigid!

There are lots of scare stories and yes, it does not suit everyone but if it works at doing the job and it suits you it's fine.

Your hematocrit is very high, do you have venesections?

Very best wishes with whatever you decide.

Judy xx

[Eoin in reply to piggie50]

I really appreciate you letting me know your circumstances, it is difficult to fully understand all that's going on at the start of this, but encouraged by your reply as I think it's the fear factor that takes its toll and takes over rational thought. I had first vene yesterday and one in 2 weeks time. It's interesting your platelets were at that level, this registrar (not consultant) is pretty determined to get me started on HU and will wait until I hopefully see consultant (for first time!) in 4 weeks time. Thanks again, keep well.

Eoin

[piggie50]

My consultant would also have started me on hydroxy much earlier when my platelets were lower if I had agreed. It's not just the platelet levels but your age as well. Best to have a full discussion with the consultant when you see him. At least you are a bit better informed now with everyone's replies.

[Eoin in reply to piggie50]

Yes I am and thanks again

Eoin

[Ebot]

Hi Eoin

You will have seen my earlier reply about over enthusiastic registrars and drug treatment (in my case Interferon Pegasys). Just wanted to add that when I was re-diagnosed last Autumn - I was originally diagnosed with ET - my platelets were around1400 and my haematocrit 56. I am however (just about!) under 60. I had a series of venesections but other than that just aspirin. It's all a bit of a balancing act. Venesections will drive the platelets up. Mine actually have returned to around the 11 / 1200 mark now. Due to see the team again shortly. Hope you feel a bit more 'armed' with info and experiences now! All the best.

[Eoin in reply to Ebot]

Yes I am, i suppose it's early days for me with treatment just starting, I will be having a few blood tests and vene (x2) over next four weeks so hopefully I will get more info about progress. However it does seem that there are variations on treatment, the treatment will be evidence based so you would have thought there would be more consistency this is what is niggling me.

[Ebot in reply to Eoin]

I don't know where you're based but if it's any help I'm under Prof Harrison and the team at Guy's. I like to think that anyone fortunate enough to be there is getting the 'Gold Standard' treatment. (Yes, even in the best regulated depts glitches do occur like the unsatisfactory consultation I had with one of the registrars but that was very quickly acknowledged - even before me raising it - and addressed. )

[Eoin in reply to Ebot]

I live in Scotland and as previously mentioned haven't seen a consultant yet! Personally I believe that a newly diagnosed patient should be seen by a consultant just for reassurance purposes if nothing else no disrespect to the registrar. But it is a very worrying time and being left with questions just makes it worse. Yes Prof Harrison's name keeps cropping up. I've been told there is a team of 4 where I am and been told i am not guaranteed to see the same person. It would be good to see just one of them!!!

[Ebot in reply to Eoin]

Yes, I agree with you! It's an especially worrying and confusing time when you're newly diagnosed with an MPN. Lots anxieties and lots of questions. It's so important to be able to talk to a knowledgable and expert health professional who you trust and in whom you have some faith. I sincerely hope you get answers and reassurances as soon as possible. Sadly I think sometimes we need to be very assertive - in the nicest possible way (!) -to see the person we want to see. Maybe worth voicing your express wish to see the consultant asap? Wishing you the very best. X

[Eoin in reply to Ebot]

Thanks I appreciate your concern i'll do my best. If I can find you I'll let you know in 4 weeks.

[James53 in reply to Eoin]

Hi

I also live in Scotland and am waiting to see a haematologist - 18 week wait!

Appointment for end of October so hope bloods have settled!!

Best wishes for your consultation

[Eoin in reply to James53]

Can I ask James does your blood count vary I am extremely new to this. Having bloods done tomorrow and second vene on monday

[James53 in reply to Eoin]

I think I am behind you in terms of diagnosis and treatment.

I am 64, have PsA and on a biological drug Benepali (Etanercept). My red cell count is around 184 mark with packed cell volume 53. Still awaiting formal diagnosis but Jak2 is negative. Bloods hover around those levels

[Eoin in reply to James53]

Thanks James might get more info on Monday probably not though until I have clinic a fortnight

[francesb in reply to Eoin]

Hi again, I would just say don't worry about variations in treatments you see on here, we are all different and our treatments are tailored to our own specifics such as age, medical history, gene mutations etc., so it's good that there is variation, it shows we are getting personalised treatment plans. I'm sure you will feel much better when you've seen the consultant and talked things through. There are MPN specialists all over so I'm sure you have some in Scotland and you can always ask for a 2nd opinion of you are not happy. Good luck with everything, best wishes, Frances.