MPN Voice
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Not yet Hydroxy !!

Im new here and have started reading posts. Im surprised to hear that some go on Hydroxy when their platelets are under 1000. Some even under 500. Im guessing it depends on age and symptoms.

Im 44yo and my platelets have been rising for atleast 10 years. They tend to hover around 1300 at the moment. Other than being easily fatigued i have no other obvious symptoms.

My Haematologist recommends not going on Hydroxy just yet unless i get other symptoms. Do you think that is a good decision?

Dont get me wrong, I dont want to go on Hydroxy unless i absolutely have to. Whats do you think?

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Hi BloodZero,

I think your haematologist is working in your best interest. Like you say, you are young (44) and have no symptoms, your platelets are also under 1500.

The criteria for usually commencing with hydrea is age over 60 years, regardless of platelet count. Previous history of thrombotic events and debilitating symptoms. I also think if your platelet count goes over 1500 might be considered a factor.

Love your user name!

Mary x

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Hi Bloodzero, all I know is that age is a factor, I am over sixty and have been taking Hydroxycarbamide for four and a half years now, and my platelets are near normal, long may this last, some doctors advocate watch and wait especially in younger people like yourself, I must admit once on the Hydroxy my life improved greatly, gone is the awful sweating, fatigue, and constantly being unwell with some illness or other, was really worried about taking a chemo drug, but now knowing how my life has improved I do not let it bother me, I keep fit, eat well and drink plenty of water well over 2ltrs a day, and have more energy than I have ever had.

So if it is watch and wait that is a good thing.

Have a great Christmas and a happy and healthy new year.

Jean

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Inspiring!!

Why the water amount?

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The water is for flushing any toxins through your body which come from taking the drug, but it is also a must for keeping your body well hydrated too, never used to drink much water but it really does work believe me. Oh and I still enjoy having a glass of wine, or champagne, life would be very dull otherwise, plus it is Christmas 🤪🍷🍹🍻🥂

Jean

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You give me such hope!

Thank you, and have a great Christmas.

I'm going too ask Santa for a giant water bottle.

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As long as it’s not a hot one (hot water bottle) 🤗

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Hi bloodzero I’m of a similar age and treatment plan to you. When the day does come when I need a little help with my bloods I will be looking towards peg interferon or ro peg. I think that in the next few years this will become the first line treatment for pv at our age. Best of luck. Jason.

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I thought I would reply as I am it seems in very similar circumstances to you. I am 45, my platelets were around 890 when I was put on hydroxy. My original consultant said I could wait until I got to 1500 as I had no other symptoms or risk factors and I was keen to avoid the big chemo-word. In March I saw a different consultant who recommended doing a bone marrow biopsy & they found incidental myeloma. Lots of tests later and another change of consultants, it was recommended I started on hydroxy mainly because of the constant increase in platelets and my haematocrit creeping up. I have now been on hydroxy since April, feel actually better than before treatment ( hadn't realised how tired I was previously) and have had no side effects. Platelets are now within the healthy range but haematocrit still not quite there so I have had to increase hydroxy to 1 tablets 4 days a week & 2 for 3 days. Venesections knock me down for days so trying to bring haematocrit down with hydroxy instead. I was really scared of the whole chemo thing but it has been a real positive thing to feel that I have this time-bomb under control. Myeloma stable and still dormant, so all good!

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Sounds like me I had the biopsy on Christmas Eve five years ago

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Hello BloodZero,

My platelets were around 1000 last year when I was 60 and I was put on 2x500mg hydroxy plus 75mg aspirin. I stopped taking the tablets in September and since then my platelets shot up to 1300 from around 450. Fear of the unknown made me start taking them again but I do not have any symptoms like yourself and also I tolerate Hydroxy very well. Just the thought that I may have to be on this chemotherapy drug for the rest of my life is also disconcerting.

Searcher56

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From what I’ve read and conversations with a number of haematologists, Hydroxy has generally not been prescribed to patients younger than sixty if they are asymptomatic and blood counts can be reasonably well controlled via other means.

The reasoning behind this is that hydroxy has a perceived increase in the chance of progression from an MPN to leukaemia, however when I met with Prof Harrison to agree my treatment plan she mentioned that this increase in likelihood of progression had been discredited by some recent research.

Hydroxy is the “gold standard” treatment for MPNs by the NHS against which all other treatments are benchmarked, but if you are asymptomatic and your blood counts are stable (either naturally or through venesection or baby aspirin), most consultants seem to prefer a “no intervention” approach.

In my own case, I am the same age as you and for a couple of years my PV was controlled by venesection. The decision to move to a drug based treatment was as a result of a combination of the venesection controlling my haematocrit well but my white blood cell and platelet counts creeping up, my “risk rating” (I had a significant thrombotic event already) and my symptom burden being unacceptable. It was great to have a conversation where all these factors were considered when devising a treatment plan. I was given a choice between Hydroxy, Pegasys and Ruxolitinib and ultimately chose Pegasys as I felt it was the right treatment for me.

If you aren’t convinced that the treatment being offered is a good fit for you, see if your haematologist will consider other opyions and remember that you are (if you’re in the UK) entitled to a second opinion and can ask your haematologist for a referral. There are several excellent specialists in this area - I chose to ask for a referral to Prof Harrison at Guys Hospital in London. Before my referral I felt I was “told” what my treatment by my consultant, whereas with Prof Harrison, she listened to all aspects of the PV, looked at blood count trends and discussed in detail my symptom burden, then we talked about possible treatments, she gave me advice but made it clear that I was able to choose what I felt to be the right fit for me.

I hope all these replies help you contextualise your own experience and give you a better view of your own path. Sorry for such a long response!

Kind regards and Merry Christmas,

Paul.

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Thank Paul, long posts are great. I like details. It helps.

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My platelets are 1134 age 54.. just on aspirin. Been told once they reach 1500 then will consider hydroxy. I have ET and had it 4 years now. Feeling ok at present just tired.. work full time.

Think it all depends on the person and the risk. I am low risk .. wait till I reach 60.

Good luck.

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Thanks. Sounds just like me.

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Hi BloodZero I don't often comment in MPNVoice anymore (more liver issues) however I was 33 When I was dx with PV, I have now had it for almost 3 years & that whole time (besides 3 weeks) I have been on Hydroxy. My platelets have ranged from 48 through to 300.... I do suffer other symptoms, tiredness, itching, spleen 28cm. I am high risk as I have already created blood clots, so I am also on Propranolol and Warfarin. I think every case is very different for each person. I have only had one venesection in that time.

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Thanks Chelle. You info helps alot.

Im curious about your spleen. At 28cm is it uncomfortable or causing complications? Doesn't hydroxy help it return to normal?

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It is uncomfortable yes. And also causing complications. I’ve got Cirrhosis of the Liver and waiting for a transplant. My spleens pushing on my stomach & lungs. I have been approved for Ruxolitinib but they don’t want to put me in it until after my transplant incase my body doesn’t take to it....

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Hi,

As you say it depends on circumstances. The highest my platelets reaches we’re 822. I was 59 at diagnosis and had had a stroke at 50. I slowly became lethargic and so no purpose to life. My platelets Are now under 400. I’m almost ‘normal’ now. Hydroxicarbomide has given me quality of life. I take 16 tablets a week.

My fatigue is nowhere near as bad as it was hence’normal’

My hair is thinning and I’m nearly always anaemic.

You have to make the descision.

Good luck

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Hiya BloodZero

I am now 65 almost 66! yuk!! I was diagnosed 2015 with ET. commenced immediately on aspirin 100mg and was told when I reached 65 would have to start HU no matter what my platelets were! Well 65 came and I asked my haematologist "was the age factor enough to start HU?" I had no symptoms of this disease, platelets sitting around 670 at present 620 in November. I will not be silly over this if the platelets did rise over 1000 I would definitely consider HU but until that day I will continue to eat well, lots of exercise and of course drink my water!!

I have to say my Haematologist was more relax about me not wanting to take HU and went with my decision quite well! My heam Dr is from the UK and actually trained with Prof Clair Harrison. So I am sure he keeps up with all the new treatments!

Al the best with your treatment. Keep well

Lyn NZ

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BloodZero,

I'm older than you and take HydroxyUrea to control my red blood cell count, not my platelets. My HGB steadily goes up over a 4 week period from around 13 to 16 and then I have a venesection. Hydroxy is not just for platelet count. Hydroxy works by slowing blood production in the bone marrow. Blood has three basic components, red and white cells and platelets. If you need to slow down production of one you end up slowing down all three.

As you read the posts keep in mind what type of issue the person is dealing with; in my case, it is Polycymethia Vera, PV, caused by a mutation in the JK2 gene.

My platelet count, (even with my highest of HGB level - 23), has never gone over about 415.

Good luck and keep asking questions!

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Hi. You asked why the 2L of water. In addition to what was already said, it helps to keep our blood thin so not too sticky in order to avoid clots. At my last labs I was asked if I was dehydrated as my platelets were elevated. Katie

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