Hydroxycarbamide and anaemia

I was prescribed hydroxycarbamide last November as my platelets were 870.They have slowly come down but at the moment are staying at 510. The haematologist says she wants them in the 400 s so has upped my dose. I have developed anaemia and starting taking my own medication 2 weeks before blood test. She says it hasn't made any difference so arranging for injections of iron in stomach. I thought it took at least 12 weeks for medication to work anyway. Now she wants another blood test to see which injections I need even though the day before she said they would be delivered. She is not my ususal haematologist, she is poorly and this one seems to have got her hooks into me. I cannot understand what she is saying and she talks so fast and explains all the medical jargon as though reeling it off and I don't understand any of it ! For some reason she thinks the Et is turning into something else and when she phoned about this 2 weeks ago I put the phone down and cried. Why should she think it is changing,,my platelets are coming down and I know hydroxyl can cause anaemia?

[Whitehair51]

I started out with 1500 mg hydroxy daily when my platelets reached 1.1 million. I became anemic while my platelets dropped to 200,000, so I asked my hematologist if I could drop the dosage. That was 6 months ago. I am now down to 500 mg daily and my hemoglobin is okay. I think you are right about giving it some time to work, I would insist on more time and another blood test before adding more hydroxy.

[hunter5582]

You are correct that HU can cause anemia. It is a well known adverse effect. There certainly are other treatment options if you are not able to tolerate HU. This is something you should review with a MPN Specialist. Most hematologist do not have the KSAs to provide optimal care for MPNs due to their rarity. Suggest it is time for a second opinion. Perhaps it is time for a new hematologist based on what you describe. Here is a list of MPN Specialists. mpnforum.com/list-hem./ .

Do be aware that not all hematologists use 400 as a target for platelet levels. There is no evidence to support this target per my MPN Specialist. There is no linear relationship between risk and platelet levels between 400 and 510. Dr. Silver, one of the world's leading MPN experts recommends 600 as the target for ET when cytoreduction is indicated. silvermpncenter.weill.corne...

Your concerns are valid and it is reasonable to question this treatment plan. You do not list any major symptoms from the ET having occurred. If that is so, then it is quite appropriate to question whether the treatment in this case is worse than the disease. I do not know what the answer to this question is, but would suggest that you seek an answer that you are satisfied with.

[Trocken in reply to hunter5582]

Sorry to hear you’ve had a tough consultation, do you have a specialist nurse? It may be worth speaking to one to air your concerns, I find them really helpful, mine was great at advocating for me when I was struggling due to low iron, it was just one point in the normal range and I felt lousy, I was prescribed ferrous sulphate (which is much higher than shop bought iron supplements) and made a considerable difference within days. It may be worth asking if you could be put on a stronger iron tablet first. My platelet count is rising and is currently at 513, I too spoke to a new registrar last month who was like your wants to increase my hydroxy and put the fear of god into me, it’s really not helpful, felt like a very knee jerk reaction, I’ve asked to leave it another 3 months and see what my blood work is like then. I hope your feeling better soon xx

[hunter5582 in reply to Trocken]

Do note that if you are iron deficient that increased thrombopoiesis is common. Iron deficiency increased my platelet level by an average of about 200. Went from ranging from 500s-700s to 700s to 900s. The docs were not particularly concerned once we ruled out disease progression and concluded the increased thrombocytosis was due to the iron deficiency. The MPN Specialist did recommend a change in my treatment plan based on the increased platelet levels since we knew the cause. Ultimately we did change the treatment plan based in part on my iron deficiency symptoms. I am now taking PEG-IFN, which should allow my iron levels to come back up while controlling the erythrocytosis and the thrombocytosis.

Hope you find a plan that works for you.

[Hidden in reply to Trocken]

I too feel lousy and wonder why she hasnt put me on ferrous sulphate. She seems to be messing about saying I will receive iron injections in post and a nurse will call to arrange to give them to me then the next day phones to say she wants another blood test next week first. if she had given me something in the beginning I would probably be feeling better now. I dont know if you had it with anaemia but I have terrible night sweats then the last two nights I have woken up freezing and shaking. My husband got me well covered and heated a pad in the microwave and a cup of tea and I soon got over it but do you think it is connected? I suppose it has to be. I just dread her phoning again as I cant understand her . It is nice to be able to talk to someone!

[Hidden in reply to Trocken]

I am taking iron supplements but now have now have been sent a form for blood test to check for myeloysplasia/leukaemia. Why does she think I may have this now just because I have become anaemic. My haematologist is off sick and this new one has taken over and is just frightening me to death.I am really feeling like telling her to leave me alone, what would you do?

[Bill209 in reply to hunter5582]

Great post! I read a similar article regarding a PLT count of 500 being a reasonable, safe upper limit (instead of 400) before increasing the dose of hydroxyurea and my oncologist agreed. Increasing the dose of hydroxyurea increases the risk of having more severe side effects or an undesirable transformation, so keeping the dose as low as possible is definitely the right thing to do.

[lizzziep]

I'm on Anagrelide and am also anaemic, this seems to happen regularly and they usually prescribe ferrous sulphate for 3 months which usually brings the numbers back up for a few months, my platelets are currently in normal levels.

[Hidden in reply to lizzziep]

How do to you take the ferrous sulphate..is it by mouth because she said I will have injections in stomach.

[lizzziep in reply to Hidden]

I take tablets, usually 3 a day. They have a few side effects, digestive issues mostly. At my appointment last week I was told I’d probably have to go back on them in the near future if my haemaglobin continues to fall. I’ve tried various supplements, none worked and I have plenty of green vegetables etc.

[nightshadow in reply to Hidden]

I take tablets when my iron is low. My doctor recommended taking it with orange juice and to eat about a half hour after taking the iron. I took the supplement with an orange and had very little of the discomfort that can come with iron tablets.

[Cja1956]

I was on Jakafi and anagrelide from 2016-2019. I had been on Hydrea before that but my hematologist at the time thought I had progressed to PV and he thought Jakafi would be better for me. Anyway, I developed anemia and my platelets kept increasing, so I switched to an mpn specialist who diagnosed me with post Et Mf after a BMB. She took me off of Jakafi and anagrelide, and put me back on Hydrea. She thinks the Jakafi may have been causing the anemia. I still take 1000 mg of Hydrea every day and my anemia hasn’t come back. It’s all very confusing to figure out how these medications will affect you and it’s very individualized. I understand your feelings of helplessness and your doctor shouldn’t have told you that over the phone and without proof. She may have unnecessarily upset you and I feel terrible that happened to you. It was very insensitive.

We are all here for you.

Cindy

[Hidden in reply to Cja1956]

Thankyou for your reply.She has now sent me a form for blood test for myeloysplasia/leukaemia test. I cant understand it just because my platelets only came down by 30 to 510 and I have low haemoglobin which I have started treating myself. It is surely the hydroxyl causing it so I cant understand why she should think it is turning into something worse

[Cja1956 in reply to Hidden]

Well, maybe she just wants to rule it out. I wouldn’t stress too much about that. I know that’s easier said than done. What do you mean when you said you are treating yourself for your low hemoglobin?

[Hidden in reply to Cja1956]

I am taking Floradix liquid iron as low haemoglobin means I am anaemic. Think I should have got ferrous sulphate on reading other posts!