I have been reasonably steady with Essential thrombocythemia (ET) for more than 8 years on hydroxycarbamide. Recently the haemoglobin has dived down from 112 to 99 in 4 months. Red blood cells similarly went down. I see a different haemotologist every time and they usually say I an short of iron, but the test results show the various iron results all seem OK. Is this situation the reason why many Essential thrombocythemia (ET) people say they could only stand hydroxycarbamide for a certain time and then no more? Or is it the Essential thrombocythemia (ET) disease itself that creates a need for transfusions of red blood cells? I would be glad to know if anyone knows.
Hello @jumbo4. I will share my experience as a fellow Myeloproliferative neoplasms (MPN) patient. I was diagnosed thirty years ago when in my thirties with a Myeloproliferative neoplasms (MPN) that had features of Essential thrombocythemia (ET) and myelofibrosis. Initially my bone marrow was overactive and producing too many platelets. Then after many years the blood cell production decreased as my bone marrow became more fibrotic. Therefore the dose of Hydroxycarbamide was gradually reduced until I came to the point where it wasn’t needed at all. This coincided with a reduction in the red blood cells being produced and a subsequent drop in my haemoglobin (Hb) levels too. I suppose what I am trying to say is that in my case my bone marrow function has deteriorated and so the disease changed. Every case is different so I don’t want to worry you. I didn’t choose to stop the Hydroxycarbamide, I came to the stage where it wasn’t needed and I now receive regular transfusions of red blood cells. I have been found to have the CALR gene mutation in recent years. When I was diagnosed all those years ago very little was known about these things. I hope this helps and I wish you well. Willow x
Thanks Willow.
You have done well to manage transfusions for so long. I dont know your quality of life but you do not mention the transfusions becoming more frequent over time, that seems good.
I have JAK 2 not CAL mutation. I still feel well but occasionally mysteriously tired for no obvious reason.
The haemotologists I have been seeing lately are mostly new to the local hospital and I am told that in the whole wider area covering about 4 million people, there are only 2 haemotologists specialising in MPNs, none near me. The ones I see always urge me to get more iron to deal with the haemoglobin. But my iron levels are normal.
Hi @jumbo4,
It’s great to hear from you. I hope you are keeping okay today?
We appreciate how unsettling it can feel when a change or drop in blood results is seen after a number of years with relatively steady numbers.
It might be hard to offer straight forward answers to your questions as you’ll know yourself- ones ability to tolerate any drug is so very variable & indeed no 2 persons disease is aligned. However it can be quite common to see blood results fluctuate, in particular Hb levels.
The most important aspect of this would be to ensure that your bloods are being routinely monitored so that if they remain on the low side action where necessary can be taken. You consultant will also consider how you are feeling in yourself and if any symptoms of anaemia are occurring.
Can i ask how frequent you are having your bloods taken & if you are feeling any new symptoms at all?
As always Jumbo please do know that our helpline is always on hand should you prefer to talk anything through- 0808 2080 888.
Hello again @jumbo4. I had my first transfusion of red blood cells in 2017 and have had numerous transfusions since. In fact my iron is extremely high now due to all the donated blood I have received. It is a complicated situation so I won’t go into all the details here. However, I agree with you, I am grateful to have a haematology team who specialise in Myeloproliferative neoplasms (MPN)’s and grateful that I have been able to live with this condition for so long. Warm wishes Willow x
Thanks for your reply. Yes I get blood tests every 3 months and occasionally another one a month later.
I have had headached from low Hb today for the first time. I shall be seeing yet another consultant on Wednesday.
Apart from the low Hb and lack of energy, I feel pretty well for my age.
I have just replied to your message but it must have gone into another place, I just answered where you have capital J on a green background in the top right corner! I hope you can find it. I am not too bad but this latest phase is all new to me
Hello @jumbo4. I live in south east London and come under the Kings College NHS Trust. Guy’s Hospital in London (near London Bridge station) have an Myeloproliferative neoplasms (MPN) team. I was referred there too but am happy with Kings College so I no longer go to Guy’s. I know of patients who travel quite a long way to Guy’s to be monitored. No doubt you have investigated these options. The Myeloproliferative neoplasms (MPN) Voice charity is based at Guy’s and has some useful information on its website. Thinking of you. Willow x