Hello everyone, it's been a while since I last posted, today I received the saddest news ever, my hematologist told me probably progression to myelofibrosis, diagnosed with ET since 2014. I was just treated with HU once a day and blood counts stable, but lately I becoming anemic, RBC(3.94) Hemoglobin (11.8) Platelets at 600, Hema said low risk and he is not asking for another Bone Marrow Biopsy to confirm his initial diagnosis.
Since the country I lived , no MPN specialist, I will still be continuing my HU dosage. He did not recommend another treatment plan.
Honestly I am too afraid, my daughter still too young, I don't know the future, I don't know what will happen now.
Please pray for me.Thank you.
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annlauriz
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I'm so sorry to hear this and how worried and afraid you are feeling. I'm not very knowledgeable about what treatment plans you should be on, but I can certainly pray for you . God bless.
hi there. Sorry to hear your news I know it is a shock when told you have myelofibrosis, as I too once received that news. I am treated with Ruxilitinib- maybe you could try and find out whether that particular drug is available where you live. I know Ruxilitinib has been a life changer for me. Sorted out my swollen spleen and gave me more energy. Good luck with everything let us know how you get on. Bruddery
Hi- I have just had a bone marrow biopsy and am awaiting the results. I have had ET for 25 years- which transposed into PV last March. They now suspect Myelofibrosis.
As you are in Rux - what have your side effects been like- I have recently lost some weight I was carrying and am concerned that I may put this back in. I also have bone pain in my large bones! Thanks for any help.
Hi there. Must confess apart from a week or so after starting Ruxilitinib where I felt nauseous, I haven’t suffered from any side effects… I do now suffer from occasional bone pain, but it’s quite manageable, I actually ‘walk through’ the pain and it’s usually at night times! I have actually been taking Ruxilitinib since 2015 so quite a while. I personally recommend it. Interestingly enough I have a brother who suffers from. PV and he started Ruxilitinib about eighteen months/twoyears ago. He doesn’t suffer from any side effects either. Bruddery
PS forgot to say that one of the side effects can be skin cancer. I actually had some non malignant skin cancer removed from my nose about two years ago. And it was something my consultant was on top of straight away referring me to a dermatologist, all dealt with very speedily. Bruddery
hi there. Yes I did have a swollen spleen this resulted in me not being able to eat big meals as I felt full all the time. I got around that by eating little and often sometimes five or six very small meals…. I also occasionally suffered from pain under the ribs… but Ruxilitinib really did clear up all of my symptoms…. Good luck Bruddery
I too have only recently been diagnosed with myelofibrosis and so my thoughts are with you. I am on momelotinib but it is too early for me to say how effective it is. The haematologist has told me that it will take about 3 to 4 weeks to kick in. When I was told of my diagnosis I was quite scared. I am slowly coming to terms with it and have resolved to fight as hard as I can. I am also fortunate in that I have a very supportive family.
Sorry to hear about the possible progression to MF. It is worth further investigation to confirm the diagnosis. I would push to a BMB to confirm the diagnosis since a progression to MF would indicate a need to change your treatment plan. As others have indicated, Jakafi or one of the other JAK inhibitors (e.g., momelotinib) may be a better choice for treating MF.
I would note that anemia is one of the potential adverse effects associated with hydroxyurea. It would be important to rule out this issue.
I believe you live in the Philippines where there is one MPN-expert doctor listed, Dr. Pricilla Caguioa mpnforum.com/tsr-the-list/ . Suggest that getting a second opinion would be a very good idea.
Thank you for your kind words. I will try to discuss with my hematologist the other treatment but I think it's not feasible,I've tried to look at the prices for JAk inhibitors here in PH it's quite expensive 200USD for one injection of pegasus, Jakavi around 30USD per tablet, and it's only available in manila, I lived in provincial area. We don't have health insurance here that will cover such expensive medicines 😞 only HU is readily available in any pharmacy.
I wish I had more to offer than words. Sadly, the interferons and JAK inhibitors are quite expensive. Few of us could afford them if not for health insurance or healthcare systems that cover them. Wishing you all the best. You will be in thoughts and prayers.
Why no bone biopsy? It is really the only way to gauge progression and then be able to work out a plan and what medications you may be able to take. Don't be afraid to ask everything you need to ask.
Hi, maybe the hematologist thinking to lift the financial burden since biopsy quite expensive here in my country, we don't have good health insurance to cover such procedures, I had my bone marrow biopsy last 2014, confirmed ET without fibrosis, I was fine for how many years managing HU once a day, it's just lately I'm becoming anemic, even I already stop taking HU for a month,I'm still anemic, my doctor is saying probably myelofibrosis progression.
Where do you live? The guessing is unnerving for you. What does biopsy cost where you are? Here in NZ I think it's about $1400 NZ dollars. I will also have to do that in the future. But if you had one, can they analyze it properly where you are?
Hello I'm from Philippines, around 30,000 pesos or 912 nzd, yes the guessing is making me nervous and scared, since we cannot access also the expensive medicines so my hematologist continues to treat me using Hydroxyurea.
Maybe also the hematologist thinking post ET myelofibrosis makes no difference in treatment plan. We cannot access interferon or JAk inhibitors, so ET or myelofibrosis will still be using Hydroxyurea. He just said just continue to watch and see.
I was diagnosed in the US as I lived there for a while. That is where I had my bone biopsy. I had good health insurance then and they would have done one every 1-2 years. But when I returned to NZ my specialist said they won't do that here. In fact not at all. I asked how I would know of progression and he said they would only do one if I deteriorated in significant ways like a big unintentional weight loss with other????? severe symptoms. So I looked up online if I could get one done myself and the cost was $1200 ,to $1400. So in the future if I want to see where things stand, I will pay for it if need be. Doesn't seem right to have to do that though. And I wonder often if things are progressing. I have muscle aches, bone aches, terrible lack of energy, symptoms just random on different days. Sometimes none for weeks and sometimes all of it for a day or several days. So it's a guessing game on that's what.
Oh, I’m early in my journey but I get all my blood results sent to me too so I can keep an eye on them. (I was a Nurse). Luke today, MCV and MCR were raised so I’ll take some vitB combinations to see if that helps.
My consultant is treating me more aggressively as I’m going overseas for the winter and won’t be able to get blood tests. Hopefully the platelets will be under control before I leave.
Hi annlauriz, yes, this is very sad news, but I think you need more information to confirm it, like a bone marrow biopsy. I also have ET, and after several months on HU 500 1 x day, I developed anemia. My doctor said platelets change pretty quickly from HU, but to see a change in red blood cells after lowering my dose of HU, it would take 3 months. They checked my blood each month for those three months, and my red cells did come up, after the three months. So it was the HU causing the anemia, not something else. They reduced my dose and my red cells are ok. My platelets are up a little, but they are balancing things out this way. I am hoping this is the same for you. I will pray for you.
Hello, I have ET-Jak2. Just my experience but I became anaemic just before Christmas and was given iron tablets for 2 weeks and my iron level went back to normal. At the moment all my blood levels are within normal range. Obviously everyone is different. Might be worth asking maybe.
Cheapest Jakafi is a 20 mg tablet at about $40 from India (original). You could split tablet (2x10mg) and take it.Off patent end of December 2028.Good luck.
Starting dose is usually 10 mg twice a day. So if you buy a 20mg tablet you can split it and take half in the morning and half at night. Online sales from india (original brand) are about as cheap as you get. If you or anyone know of cheaper I would like to know.
I am so sorry to hear about your situation and am sending you strength and prayers. Please investigate further a bone marrow biopsy so that at least you will know what you are dealing with.
Hi, I had ET now MF, I am currently on Hydroxy and Momelotinib. The Momelotinib helps with my anaemia and the hydroxy keeps the platelets down. Maybe you could be prescribed something to improve your haemoglobin which wouldn’t be too expensive?
My anaemia got worse with the MF otherwise not much changed so staying on hydroxy is probably good for you. I’m sorry other medication and treatment isn’t available to you. We are lucky to have access to these things in other countries.
Keep in touch with this site you will get information you may be able to pass on to your doctor.
My hema wants me to just wait and see, so far my hemoglobin not that alarming borderline low at 11.8. RBC 3.96. If it will go lower he will advise me for blood transfusion, but he said he will see me in 3 months. I will take matter on my own hands and will find some supplements to boost hemoglobin.
Hi. I was recently diagnosed with post ET MF after 10 years of original diagnosis and can appreciate exactly how you feel as I also have a young daughter.
As Hunter has said, I think you need to push for a BMB to ascertain exactly what you are dealing with - anemia in isolation does not necessarily mean you have MF - usually you would have an enlarged spleen, as I did, and other factors.
I wish you all the best and try not to panic. At this stage you do not have the full picture.
Hi , I actually have mild splenomegaly since 2014, but it stay the same size throughout the years. My spleen size around 13 x 9 cm. I believed I have ET for 20 years or more. Just got diagnosed year 2014 due to routine CBC then after confirmed via BMB.
Firstly Annlauriz I read your message with love and compassion hearing your worry, sadness and confusion surrounding your situation. I agree wholeheartedly with many of the above posts, that it is non negotiable that you need more insight as to what is the cause of your anaemia. You may find that you are full of worry for an unknown outcome, ie you may not have the MF, and put it this way, if you have you need the correct medication. I understand how more difficult it is for you having fewer resources where you live, but you must push now for your health needs to be addressed. If it is any consolation I too, living in UK, had to push very strongly to be allowed a bone marrow biopsy - there was a lot of resistance due to costs! If you can't fight for yourself, fight as though you are doing this for your young daughter. It is essential that you have the knowledge to know what you are dealing with and then you can face the future with knowledge and empowerment. I respect your faith and everyone's prayers too it has to be said, and my prayer for you is that you find the inner power to resource more insight into your health status. I wish you all my love and sending you strength to value yourself dearly and to discover more about the cause of your anaemia. I would also be cautious about the use of supplements at this stage, as this may mask any tests that you can have in the near future, you are best to present yourself 'raw' so that the root cause can be truly visible. I do hope that this makes sense and wishing you well. Keep in touch with us and good luck. xx
I am so sorry to learn about the progression.I believe there is planty of hope in your case and yes I will have you in my prayers tonight.
I also have young children and mortgage, been on interferon for over a year and for some reason my counts are gradually creeping up. Awaiting one more blood test before investigating this further.
Hi, I was in 2005 diagnosed for ET. In 2014 the same as you progressed to MF. From than it took 9 years. So in 2023 I progressed to AML. 04 October I had a bone marrow transplant. Yesterday my hematologist told me twice you are through now. Although all of this it’s extremely scaring, there is still hope. Belief in your doctors. Keep well and hope for the best outcome!❤️
I see she is saying there is no specialist in her country and cannot afford bone marrow biopsy or other medications. It is a hard situation to be in without resources. We care and pray that a door is opened for your specific circumstances. God bless you. Xx
Stay Positive Mind over matter You can do this, look further into helping yourself live with this diagnosis, stay strong, you will be fine. I will pray for you too
Hello Annlauriz, I keep thinking about you since first reading your post.Of course I will pray for you and your daughter. I ask the Divine to send you Love, Light and Healing, and the power to navigate your path through this challenge with positivity.
Until seeing the situation you are faced with, I had failed to fully appreciate the tremendous luxury I enjoy, of being able to make my own choice.
And my choice, currently, is to refuse all medication and look after myself with a mainly vegan diet, of local or even home-grown produce, although I have recently added eggs from rescue hens. I take high dose liposomal Vitamin C and a few other relevant supplements and a large glass of red wine nearly every day.
I am in my 80s now. My symptoms of tiredness and weakness began nearly 20 years ago and at the time I put them down to aging. The diagnosis of ET was not until 2019. Occasionally my check-up report describes it as MPN unspecified, but usually ET. Apart from the fatigue, my system seems to jog along quite happily with platelets around or just under 1,000k. The stress of the first Covid lockdown shot it up to 1,400k and more recently, now enjoying a lifestyle which is fulfilling both spiritually and emotionally, my count has been gently coming down. On Monday, at Guy's hospital, it was 773. This, in fact, is the lowest natural reading I have ever had.
So, please, Annlauriz, enjoy your life. Enjoy your daughter. Consider your main treatment plan is to keep you both well-nourished, happy and contented.
In Love and Light and with warm, virtual hugs, from Daisy
So sorry to hear this devastating for you, but I am on a Facebook site where some people have had myelofibrosis for 20 years or more, do not despair please they have many clinical trials running, I have had ET JAK 2 since 2011
I don't have any specific symptoms cause ,I feel the same way, fatigue and bone pain is common for me since I have autoimmune disorder (psoriatic arthritis and psoriasis). Just a little bit anemic even stopping HU for a month. Hemoglobin a little borderline low for 118. Maybe lost a little weight but I cannot pin point to it cause I'm also on a diet. Spleen enlargement, I had it since 2014 when I was diagnosed with ET just a mild enlargement. No changes in size.
Prayers for you from here in Alabama. Try to let faith guide you and listen for that still small voice direction on how to proceed. I have about the same going on in me with my platelets jumping up to one million. Keep us posted please.
I can only imagine what a difficult time this is for you. Progression is terribly frightening. You have a community of support right here. One day at at time... Hugs
Hi. First, sorry to hear about your diagnosis. I too transformed to MF from ET in 2019. I’ve been taking Ruxo since 2023 and my symptoms greatly improved. But, the truth is most of these medications may improve quality of life but do not stop the progression, The good news is that you’re young and some people live many years with MF. The life expectancy that they talk about is usually for someone much older since the average age for MF is 60.
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