I have been on hydroxycarbamide for ET for nearly six years. Almost every blood test has shown decreasing red blood cells and haemoglobin. At the present rate I may be on blood transfusions within about twelve months. I am not sure whether the medication is damaging the bone marrow ( I am JAK-2) or producing increasingly inferior red cells that have a short life. Alternative medications are not generally favoured for older patients. Has anyone come across a similar situation? Jumbo
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Hi @jumbo4, I am sorry that I cannot help you medically, but perhaps these are questions for someone from your medical team because quite naturally these are really concerning you.
Although someone might be able to share their experiences here, we await.
Take care and stay safe and please let us know if you get any answers and how you are doing.
Hello @Jumbo. As @Erica says, the best people to answer your question would be your medical team. However, I will share my experience in the hope it helps. I was diagnosed many years ago with an MPN that had features of both Myelofibrosis and ET. Initially my platelets were very high and I was on Hydroxycarbamide for many years. However, I gradually noticed that my Hb and red blood cell count were dropping. Also, the dose of the Hydroxycarbamide was reduced as my platelet count was also dropping and I didn’t need such a high dose. I mentioned this to my haematologist and asked whether it might be wise to have a sample of my bone marrow analysed as it was several years since this had been done. I was found to be CALR positive (not JAK2) and the results showed that my bone marrow was becoming more fibrotic, hence the reduction in my red blood cells and Hb. I don’t want to worry you by sharing this, but you might want to consider asking if your bone marrow could be tested in order to find out more? It might show whether the ET has progressed or whether it is the result of taking the Hydroxycarbamide. Let us know how you get on. Warm wishes. Willow
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My hb levels have dropped to borderline. The haemotology dept said if it carried on they would reduce my dose of HU next blood test .my platelets are high 600 but alot lower and more stable than they have been .I’m Et Calr positive on HU and angralide since March …been in HU for 2 yrs
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Thanks, @Hmc63, how are you feeling and how concerned are you about your levels?
Do you get anxious before appointments and tests like I do?
Does anyone else get these feelings of anxiety?
Thank you for your interesting comments. I will see what I can do about it. I have been diagnosed 6 years ago as JAK2. I assume you think it possible that the medication could change again. I don’t know enough about it but I will ask. Jumbo4
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Willow,
Did you ever get a diagnosis of jak2 or or anything like that years ago?
Jumbo4
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Hi @jumbo4. I was tested for JAK2 and was negative. Then a few years ago they found out I was CALR positive instead. However, my disease has always been extra complicated as, at diagnosis, it had features of ET and Myelofibrosis from the beginning. It has now transformed into myelofibrosis. I was initially diagnosed in 1992 so not much was known about MPN’s in those days and I was in my thirties when I was diagnosed which is unusual. Hope this helps. Warm wishes. Willow
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Thanks Willow. I wondered whether anyone would be able to say they had experienced of what haematologists do for a patient when the haemoglobin really gets low. Would it be medication change or would it be endless transfusions? You sound as if haemoglobin is not a big issue now for
you but no doubt you have other problems. I don’t know much about myelofibrosis but I do know that it is possible for ET to go in that direction. Thank you anyway, I hope it goes well. Jumbo4
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Hello again @jumbo4. Actually my low haemoglobin is a serious problem now. I have regular transfusions and have been put on the drug Danazol which helps to boost my red blood count. I also tried EPO injections but they didn’t work for me. Bear in mind that I have had my disease for 28 years so it has taken a long time to get to this stage. The problem with too many transfusions is that my iron level is now dangerously high. It is called iron overload and can cause damage to other organs in the body. It is complicated but I am not giving up and have a good medical team looking after me. Hope this helps. I wish you well and please let us know how you get on. Warm wishes. Willow
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Hi @jumbo4. I’m also ET JAK2+. I was started on HU the day of diagnosis - 2 years ago. Initially I was on 16 x 500mg per week and after several reductions I became anaemic. The HU was finally reduced to 1 tablet Monday to Friday only and platelets stable at around 280. No longer anaemic.
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Michelle, it would be great if I could do the same. I lost a lot of red blood cells while on 7 X 500mg HU a week (platelets around 410) and reduced dose to 6 a week a year ago (platelets around 460). I wonder have your platelets been higher in the past? If not, I wonder why you take HU at all. Jumbo4
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Thanks Willow. I have never heard of Danazol but I know there are one or two drugs that can be used as a last resort. I hope you get on well with it. A lot more research is needed in these myeloproliferative diseases. Do you find that you need transfusions more and more frequently?
Jumbo4
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Hi This is first post I was diagnosed with ET 31/2 years ago and was given hydroxycarbamide During the second year I was also given Anagralide and was slowly wean off hydroxy. In Nov last year my haematologist phoned me telling me they had found something in my last blood test that shouldn’t be there I waited 5 weeks for the bone marrow biopsy and a further 5weeks for the doctor to get the results 6 weeks after that I had a face to face with the haematologist! ( 16 weeks of anxiety). I was told I had Myelofibrosis, to stop taking the Anagralide and start back on Hydroxycarbamide I’ve been thinking did stopping Hydroxycarbamide cause scarring in my bone marrow I’m having blood tests every 2 weeks now to try to have the right dose sorted I’m feeling anxious for the results as am lower the normal parameters on many of the things they test for. I am so glad I’ve found these chat room Wishing you all well
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Hi @Ginny421 and a great big welcome to posting on this site.
You describe your last 3 1/2 yrs so well.
Isn’t it an anxious time for you and the forever waiting on tests, test results and medical appointments, no sooner one then the other.
Waiting is the worst feeling
Perhaps at least it shows that you are being closely monitored and the medical experts are on your case.
If you would like to talk to someone the Blood Cancer support line is there for you and you are now part of our forum family.
I look forward to hearing more about you.
Look after yourself
Hello @Ginny421. Thank you for sharing your story. I feel for you at this uncertain time. Almost thirty years ago I was diagnosed with an MPN that had features of ET and myelofibrosis. For many years I had overproduction of platelets in particular and was on Hydroxycarbamide. Then things changed and I now have the opposite problem of not producing enough blood cells (especially red blood cells) due to scarring of the bone marrow. Therefore I no longer take Hydroxycarbamide. There are a lot of new and effective drugs to help with the symptoms of myelofibrosis and the doctors know so much more about it than they did when I was first diagnosed. I am taking ruxolitinib and a drug called Danazol to help boost my red blood cell production. Hope this reassures you a bit. The Hydroxycarbamide may not have caused the scarring, it might just be part of the disease process, as in my case, but I am not a doctor. Thinking of you and sending warm wishes. Willow X
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Hello Willow Thank you for responding so quickly Physically I feel fine but it’s the thought that I will be always be waiting on blood results is hard to get my head around I have read lots of info on google since I received the news so I have asked for a copy of my blood results to be sent to me after each test. Im the kind of person who wants to find answers and not to be baffled by medical terminology that doctors relay to me It seems that my platelets are a problem ( 589) at the moment and hopefully be dealt with with hydroxycarbamide The thing that concerns me the most is that I’m not making healthy red blood cells— they are the wrong shape or the have a nucleus which stops the cell having haemaglobin I know I am at the start of my journey and have gone on a bit about me It’s sort of reassuring to know there are other drugs around not just hydroxy Blood cancer seems so different to other cancers that can be removed and I hope research is doing as much as possible for blood cancers Take care Willow and all
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Hi @Ginny421,
Thanks so much for sharing your experience with us all. It does sound like you have been through a really uncertain time lately and your feelings of anxiety are fully understandable. May i ask how you are feeling now?
As a few have already highlighted- should you ever wish to talk things through please do remember our support service team are only ever a call away and would be more than happy to hear from you Blood cancer information and support by phone and email | Blood Cancer UK
Do Take care, Lauran
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Hi Lauran Thank you for your concern I’m feeling ok I don’t feel I have any symptoms at this time which makes it all feel a bit unreal. I feel I’m very lucky as I would not have found I had ET three years ago if I hadn’t had a very routine op when they saw that my platelets were nearly 1000 I could have easily not had this op as it was kind of cosmetic and I might have not been diagnosed until I had symptoms Thank you for the offer to chat if I need it I will keep it in mind Regard to all Ginny
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Thank you @Ginny421 for your kind reply. Interestingly I was told constantly that my red blood cells were the wrong shape. I think part of the problem was that they were enlarged. However, one haematologist explained to me that it can be a side effect of the Hydroxycarbamide that can cause the red cells to be enlarged. I am like you and find it helpful to gain understanding of my condition and some of the terminology. However, I feel more reassured by not trusting Google, but by gathering advice from reputable sources such as BCUK or MPN Voice. Warm wishes. Willow X
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