I have already posted replies but does this mean that my other posts didn't go on the site because I hadn't yet seen my email to verify my email address? If so, I will start over.
Diagnosed March with ET JAK2 and put straight on Hydroxy. I need to get the anger under control because I have not been given the opportunity to have vene. prior. I would have considered it only good practice to allow a relatively non-invasive prognosis for as long as it is effective, prior to putting me on this (apparently leukaemia risk) drug. It just seems too dicey for me. 10 days in .... Can anyone tell me the closest area North West where they may do that instead?
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JackLina
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Hi Penelope, it can be a bit overwhelming when you first get diagnosed. You say you have ET, in which case venesection is not an option. Platelets reproduce far too quickly for that to have an effect. Have you looked at the MPN voice website. There is lots of really useful information there. I can only guess at the reasons for why chemo has been chosen for you as a first line option. Some possible reasons are:- really high platelet count, age >60, previous thrombotic event of some sort. That's one for discussion with your doctors. Can't advise you as regards different doctors is concerned. North West? UK or somewhere else?
There are many people on this site who have been taking hydroxy for many, many years with no serious ill effects, and I'm sure some of those will be able to reassure you. Personally, if advised to, I would take it. Having seen my mother develop dementia overnight as a result of a stroke, I'd do whatever it takes to lessen the chance of that happening to me.
Thank you so much for your email. I cannot express how much it has helped me to settle into my situation. As far as I know, my highest count was 568 and just prior to taking this was 528. I didn't think that was bad but can accept that the consultant would have experience in the field.
Your comments however, have meant more to me than the 10 minutes I was given by him. Thank you again. So much appreciated.
You're welcome Penelope, I was only diagnosed last year, so can remember all too well how it feels. I was looking at some of the symptoms you described in one of your replies below. I've suffered from quite a few of those prior to my diagnosis. I won't say they've disappeared totally now that I'm being treated for my PV, but they've certainly reduced in both frequency and intensity. Hang on in there - things will get better. Liz
I can imagine you are feeling very overwhelmed right doubt and no doubt just a little out of control.
I’d also endorse lizk’s reply. Venesections are not an appropriate treatment for someone with ET. And from experience of having PV with high platelets (my diagnosis moved from ET to PV) I know that a possible effect of venesections is to push up the platelet count. The only non invasive treatment is aspirin.
As for Hydroxy. The link between Hydroxy and leukaemia is open to debate. Ten years ago it was widely held that the drug posed a high risk. That is no longer the view. The picture is complicated. As far as I understand it’s not the drug per se that increases the risk of developing leukaemia but the combined effect of other drugs a patient might have taken previously. And as far as I can work out this doesn’t really arise these days.
There are other drug options. But it really is a case of ‘choose your poison’. Hydroxy is generally well tolerated and effective. Which is why many clinicians plump for it as their first choice. However, it is worth having a conversation with your haem about why Hydroxy (over Interferon say) and why treatment (other than aspirin) at all. MPN Voice is an excellent resource
Ultimately it’s about risks and benefits. And weighing up your clinicians advice and your personal preferences. Hope you can settle your mind.
Thank you Ebot. I cannot tolerate aspirin and take clopidogrel, which I was under the impression had been partially the cause of the increased platelet count. When this was first noticed by my GP, I asked that question and he said, 'most likely', but I haven't yet had my first blood test after starting Hydroxy, so cannot judge the possibility. I also suffer from transient aphasia, which visits me too regularly and was being treated as a TIA due to the dodgy right arm, wonky eye-sight (disappearing left vision) and mental confusion that went with it but a lovely doctor at the hospital, who took the time to have me properly assessed told me he was sure it wasn't and he was right. If he hadn't insisted on numerous tests, I would never have learned that ET and JAK2 was the cause.
So, I must accept that this is where I m now and will be forever...... Still find it difficult. I need to be convinced that all these diabolical side-effects will subside, eventually. Breathless, general feeling of unwell, cold spells, very hot spells, sleeplessness, pins and needles in my right hand.
Sorry to give you an epistle but I'm on a roll.......
Thank you so much for taking the time to reply to me. You have really helped. I'll settle down and accept it eventually, I'm sure...not!
Hi Penelope it really does feel like a game changer doesn't it. Its early days for you and its normal to have all these emotions before acceptance kicks in. I have ET Jak+ and was diagnosed with a platelet count of 900, I had all sorts of side effects, many you describe and more, but to be honest this was before hydroxycarbamide. Since being on hydroxy, I feel so much better. On reflection, I experienced all sorts of symptoms when I started the hydroxy and maybe they were real and maybe they weren't, but now I don't feel the medication causes me any side effects, perhaps my body has adjusted over time. Eventually like you say, you will settle down and just get on with it, but right now its a big thing for you to deal with.
Thank you . That helps a lot. Yes, I had a lot prior to the hydroxy but the new ones are really severe. Very painful bones and painful walking when I first stand up. Very painful joints. I just need to go along with it and see if it improves. Much better day today. Yesterday was dreadful. So things are looking up already. Cheers
Hi PenelopeMK, how are you doing. I do hope your symptoms have started to ease. I was interested to hear that maybe clopidogrel contributes to high platelets. I too am on that. I have ET. I’m actually thinking about switching back to aspirin. Purely for travel insurance. As they always ask ‘do you take anything else apart from aspirin to thin your blood?’ It immediately puts you on the YES colourblind.
HI Penelolpe, welcome to our forum, I can see that you have had some great replies and from your responses that you feel a lot better. It is such a shock when you are told you need to start on medication other than aspirin or clopidogrel, I was the same, I have ET, I was diagnosed in 2003 and although my platelets never went over 900 at any time, I had to start Hydroxycarbamide 10 years ago because the symptoms of dizziness, head pain, confusion, and dreadful fatigue were having a huge impact on my quality of life, they have made such a difference to me, given me my life back, and I am happy to take them as I know they are keeping the platelets at a nice low level, below 400 most of the time, and more importantly, I only suffer with some of these symptoms now and again, rather than all the time. The risk of Hydroxycarbamide and leukaemia is very very rare. There are other medications that can be used to control platelets, but Hydroxycarbamide is the first line treatment and has been used for many many years and is very effective. The criteria for starting anyone with a MPN on medication is not 'set in stone', it is very individual and your current and previous medical history is taken into account, so your haematologist will have decided to start you on Hydroxycarbamide after looking at all of these factors. Have a look at our website mpnvoice.org.uk, there is lots of very useful information on there that you can trust. Best wishes, Maz
Thank you for this information and for giving me a more positive attitude regarding this situation. I still can't lose my disappointment in the haeme. however. I'm going to be ready for him next time but cannot believe his requested 2nd appointment is 6 weeks from prescribing this. What happened to monitoring?
Yes, I have all the symptoms you mentioned and it has really impacted on my 'working' life and I'm determined to keep working. It was almost a relief to find I had a condition causing it and that I wasn't just becoming mentally incapable. My memory has been dreadful, I couldn't remember to do anything much and just wanted to sleep all the time. If I did remember I needed to do some task or other, I couldn't work out how to do it, even when it was something really basic. A complete lack of processing skills.
I will take a look at mpnvoice for more info. Thank you again
Good morning Mazcd. Thanks again for all the info. I have now been on Hydroxy. for 15 days and the bone and joint pain is making me feel disabled as is the breathlessness and associated congestion. My knee is so painful when I first move to get up and not improving at all. Will these symptoms go. they became so much worse since starting the medication, if it hadn't been for this site and the positivity I have read, I would have quit.
Now, following what I'm told was a mini-stroke last Saturday, my doctor is telling me i should be taking pills to reduce my blood pressure. Shouldn't the hydroxy also deal with that when it's up to speed? I have a long term aversion (well my body does) to statins and BP medication.
Hi Penelope, you are very welcome. If these symptoms continue then speak to your haematologist, it may be that Hydroxy isn't right for you, or that the dose needs adjusting, it can take a while to get to the correct dose for each person. It won't control your BP, it is only reducing and controlling your platelets and reducing the risk of blood clotting and bleeding. Maz
Thank you. I'm seeing him next on Wednesday 2nd May, so hopefully, he'll come up with similar. Splitting neck and headache now but had those previously. I'm on 500 at the moment and clopidogrel. P.
I was reading some earlier blog and noticed a reference to a get together. Is this something that happens regularly and if so, where are they normally held?
Hi Penelope, we hold regional patients' forums around the country every year in various locations, I am in the process of arranging them for this year and will post details on this forum, and on our website, I will also send out an email and postal letter advertising them. Best wishes, Maz
Thank you Maz. I'm just looking back over my posts to see how I was coping 3 months ago. I can report that i have now administered my 5th. dose of Pegasys yesterday (Friday) and although it brings with it many side effects, after 3 weeks my platelet count had dropped to 380. Haeme now has left me with 7 weeks before i see him next. Is that not rather a long time considering the drop?
I'll contact my wonderful nurse.
I am looking forward to meeting a few people in September, in Liverpool, who I have communicated with on this site.
Hi Penelope, I think you are wise to contact your nurse for her advice about your next appointment, but I am pleased to hear things are ok with you, looking forward to seeing you in Liverpool. Maz x
I have been diagnosed with ET Jak+ couple months ago.
I am on hydroxy for 5 weeks now.....platelets gone down from 1200 to 750.
Had my appointment yesterday and was hoping my platelets level will be much lower. Not sure how quick the chemo works.
My doc gave me another 4 weeks of chemo then blood test again and doc app.
Hoply u will adjust to hydroxy, my side effects were different every day.
Mostly neck and back pain at first couple of days of taking it. Sometimes pain in my knees, or legs. It’s just very strange as some days even couple of days in a row I was feeling fine no side effect at all.
Had my bone marrow biopsy week ago and still waiting for the results......absolutely petrified
Hope you will feel much better soon and your side effects will ease or disappear 🙂
Thank you for raising my hopes a little regarding the side effects. My nurse keeps saying she doesn't think my pain is anything to do with the drug but it has to be. Yes, I have fibromyalgia as well but the pain in my bones is brand new, mainly my right knee and it's every day. I also have a general feeling of infirmity. I feel like an old woman and I have never been that way, even at my age. My pins and needles in my right hand is constant. I have a history of Reynauds so I presume the drug has made that more prevalent, like the joint pains.
The best way to deal with the biopsy is to relax. I had a lumbar puncture to test mine as a lot of other things were being tested at the same time. I was really frightened but I just spoke to the doctor who did it for ages before hand until she convinced me she was brilliant at doing them and that I needed to relax, which I did and without a word of a lie, I felt nothing.
I'm sure all will go well for you and you will be able to move, better informed about your condition. All the very best.
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