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Anyone on hydroxyurea for calr positive? Any side effects?

Hi all

I am 48yo, female diagnoised carl positive 2yrs ago and i did not start with any medication till yesterday dr wanted me to start with hydroxyurea 500mg, mon-fri which i am still very reluctant. My count was 713, texted yesterday. I am not on aspirin as well.

I read alot on the side effects and fearful so take the drug, trying to delay as late as positive to start with.

Hope I could all from all related to this.. :(

Thanks much

swess

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Hello

I am 50, with ET Jak2 Neg. I was diagnosed in January 2016. I was put on HU from the beginning as well as aspirin. My initial dose was 1,500mg daily which was then increased to 2,000mgs daily and double at weekends. I now take 1,000mgs daily which seems to keep my platelets within normal range. My aspirin has been reduced to every other day.

As for side effects, everyone reacts differently to this drug and some people do not get any side effects at all. Personally, I suffer with side effects with whatever tablets I take, so I knew I would with HU but they only lasted around 6 weeks. However, I did not suffer with hair thinning, the complete opposite in fact, my hair went from a short thin bob to a long thick mane! Fast forward 2 years and I feel the best I've ever felt in years and my platelets are in normal range, so this chemo has done wonders for me. I am now monitored every 3 months with bloods once a month.

Your dose is low so I doubt very much you will have any side effects. If you do, they are not horrific so try not to worry about it. I take mine with my evening meal every night at the same time to avoid any side effects creeping in. It's best to take them with food or some crackers and/or at the same time each day/night if possible.

I hope this helps.

Regards

Angela

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Hi Thanks for sharing. But still I may not want to start with Hydroxyurea.

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Hi swess

I have ET Jak negative also. I was diagnosed Sept 16 and am on aspirin only. However its likely I will start Hydrea very soon as my platelets have been around 1.2 mill for over a year now and im experiencing new symptoms. My consultant wanted to start treatment in November but like you I am very hesitant so I asked to hold off for a while. Will be seeing him next week so will see what happens.

Can I ask why your doctor has recommended to start you on treatment now?

Regards

Mandy

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Hi Mandy

My doctor just worry that I will have the risk of getting stroke, therefore she started me with Hydroxyurea which I did not take. My count only 713 and wonder why she starts me with chemo drug. Understand that it will also kill the other red and white blood cells as well

Thanks

swess

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Hi, your team are all super qualified to give you advice.At first it is frightening and you feel like you are spinning out of control, but you are not alone on this one.

What is the point of going to see your team if you don't follow their advise.

You are young and have time to work through those issues and concerns you may have, however,trust that the doctors know what they are doing.

Keep strong, ask plenty of questions and keep a diary

I take mine at 2 pm, and keep hydrated.

Side effects as yet nil..

We are here to help you make informative choices,

To keep healthy and become proactive with your compliance.

I am 64 female with type two Diabetis and it is my intention to keep well, fit and enjoy my life. This condition is manageable.

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That's understandable, and most of us are, or were, very reluctant to start chemo. The chemo will reduce your risk of a heart attack and stroke and some patients are managed with just an aspirin daily. If your platelets continue to rise or your symptoms persist or increase, they will start you on some form of meds. Obviously, it's down to you whether you take them.

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Hi, I was diagnosed 2 yrs last October. I’m Calr ET. I’m 62 yrs old and high risk because I had a stoke when I was 50yrs old. I was already on clopidogrel.

At their highest my platelets were 822. It took two weeks for hydroxicarbomide to kick in. All

I can say is that I am much much better for being on it. I currently take 1000mg a day 1500mg on Saturday and Sunday.

For a while my platelets were kept at 450 then rose.

At my request the drugs were increased to the present level. Last test showed I was under 400. It suits me much better . I will be attending clinic on the 6 th February so will get to know if I can reduce my dose then. I get a few mouth ulcers a small price to pay. I take b12 and turmeric and black pepper in order to try and increase my blood levels because I’m always boarderline aneamic .

Hydroxicarbomide has given me a life worth living.

Good luck in your decision.

X

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Thank you for sharing. I will speak with another doctor to see what treatment suits me the best

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Hi Swess, it’s wyeburd again. Forgot to mention. I’m terrified of having another stroke. Statistics reveal. 1/3 of people die, 1/3rd of people survive but left with disabilities. 1/3rd survive with no major issues. Think the odds are against me to be in that final 1/3rd again.

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Hi Wyebird,

Noted with thanks. Will consider other treatment as I also do not want stroke happen to me

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Sorry Mandy, to hear that you had a stroke, how was it? Hope it was not badly damaged...

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Hi swess. It was Wyebird who had a stroke. That'sa worry always in the back of my mind. I was just curious about the reasons your doctor was starting you on meds. My understanding is that age (I'm 45) and platelets below 1.5 million puts us in the low risk bracket unless you are symptomatic or had previous clots. My consultant is only considering Hydrea for me now because my platelets are fairly high and because of numbness and tingling sensations I have been experiencing lately. Plus very recently my eyesight has deteriorated quite a lot. I also experience severe pins and needles and numbness in my hands during the night.

It is very daunting the thought of starting treatment but is very reassuring to read here that lots of people tolerate it very well with little or few symptoms.

I wish you well.

Take care

Mandy

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Hi Swess, it’s wyebird here. Yes it was I who a stroke. I am well thank you. Ironically 2 months before my stoke I gave a huge blood sample to breast cancer research. My consultant, with my consent contacted them. They still had my blood sample. No sign of mutation. So I’ve just been given a double wammy.

In medical terms I made a full recovery from my stoke although at the time I didn’t think I would.

It was only when I got on the trampoline about 10 months after it and did a manoeuvre did I realise I have a permenant weakness in my neck. That was a very scarey moment.

You could always try H and see how you fare.

Good luck

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Hi Wyebird,

Thanks for sharing. I would not want to start hydro at this age first, will speak with the doctor again. The strange thing is when last year Aug count was 738, she did not even start me with hydro and told me that monitor. I do feel pins and needle on my fingers at time but not often

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Hi Swess, we are all different. I’m almost sofa bound when my platelets are 500 +. I wish you well.

Maybe try meds for a month.

Either way life sucks when fighting a chronic illness. Keep me posted.

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No. I'm not gonna start hydro now. As I'm only 48. And my count only 712. I'll seek another opinion

Accept it's part of us. Life goes on. We are very much better than many. Life still beautiful;)

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You do not seem to fulfil the criteria for starting cytoreductive therapy. Age 60 or above, platelets around 1500 unless you are symptomatic or have other health related issues?

I would ask for a second opinion. You’re also Calr + which I believe is the ‘better mutation’ with regards to risk of thrombotic events. Don’t take my word on this seek medical opinion.

Mary x

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Thanks Mary. Yeah for my age, I am reluctant to start chemo drug. Heard that it will also kill white and red blood cells, is that true?

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To be fair hydrea has worked well for me. My age at diagnosis however fulfilled the criteria for me to commence with this drug. My red cell count did drop slightly at the beginning of treatment but is ok now.

Get a second or even a third opinion if you’re not happy.

Mary x

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thanks marry, i will... to see what is the best treatment for me

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Hi Swess, we can all understand how scared and reluctant you are about starting Hydroxy, we all go through that. When it is prescribed and why can vary quite a lot from patient to patient, there is no real 'one size fits all' and consultants will follow the guidelines but will take these into consideration with you and your blood counts now, your overall health, your past medical history, your risk factors, of strokes, blood clots etc. I myself have ET, triple negative, and have been taking Hydroxy now for nearly 10 years (started when I was 48), I started taking it because I was suffering very badly with symptoms of dizziness, head pain, fatigue, confusion etc, and my consultant said Hydroxy would help, which I must say it did and still does, my quality of life changed so much since I started taking them, I got' me' back. I still do however, have days when I get the symptoms, but they are not as severe or prolonged, so I can cope with them. My highest platelet level was under 900 and I now range between 320 - 370. So you see, it can vary widely from patient to patient, and it is a very hard decision to make, and one only you can make yourself after reading about Hydroxy and discussing it thoroughly with your consultant. With regards to the side effects, they sound awful, but if you read any leaflet for any medication you will see a long list of possible side effects, it doesn't mean that you will get any or all of them, and if you do, they may not be too bad and you can cope with them. Best wishes, Maz

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Hi Maz

Thanks for sharing. For my age now, and sitting at 600s-700s, i am still very reluctant to start though. I will seek another advice from doctor to see what is the best treatment. I do have headache on and off but still manageable. I do feel fatigue as well but not sure it could be due to age and also perimenopause?

Still quite fearful of taking hydroxyurea and I know its gonna be life till the day I am gone.. :(

swess

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Hi Maz

Yes forgot to mention, lately I have been experiencing dizzy and headaches.. Still, really reluctant to start chemo drug.

You are the same age as me when u started hydro. And glad to hear that not much side effect and given u life back.. awesome!

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Hi,

I'm a 61 year old female CalR positive, diagnosed with ET in 2013 platelet count at the time was 1500+.

I was immediately started on 1500 mg of hydroxycarbamide 3 x day and daily aspirin. This had positive results and after 3 months my platelets dropped to 650, however over the years my counts have fluctuated and hydrea dose changed frequently (never above 1500 mg 3 x day). I suffered very mild side effects for the first few months, metallic taste in mouth, mouth sores (mild). My neutrophil count is on the low side so it takes longer than usual to recover from infection.

After a couple of years when my platelets started going up I was started on Anagrelide but that had to be stopped due to side effects.

I've been on Inteferon for 9 months with the view to stop hydrea once my counts stabilise but it's still fluctuating between 450 - 650. My current dose of hydrea is 500mg 5 days a week and 1000mg twice a week with a view to stopping it completely if my counts stay low.

Personally hydrea has worked for me but I can understand your concerns. Good luck with whatever decision you make.

Bez xx

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