Hello, I am new here - really wish I had found you sooner.
My Dad is usually a very active 77 year old. He found out he had ET aged 46 and was initially treated with aspirin. He then started taking Hydroxycarbamide, but he didn't tolerate it well so was switched to Anegrelide, which suited him well for many years. However, several years ago we were told his condition had progressed to MF, and his consultant put him back on Hydroxycarbamide. It still doesn't really suit him and makes him quite nauseous, however he isn't one to complain, and so long as it has been keeping his blood readings stable, he has been persevering with it. He also takes Clopidogrel.
However, since January he has been admitted to hospital twice with pneumonia and the Hydroxy was stopped whilst he was on IV antibiotics. He is reluctant to restart the Hydroxy, as he is concerned it has affected his immunity. This week he has had his blood taken and his platelets are upto 1500. He had a phone call with his Haematologist yesterday, who told him he had to restart the Hydroxycarbamide,which he has done. The consultant suggested they might try Busulfan as an alternative - this concerns me, as I have read about the adverse affects.
We have an in person appointment at the hospital next week, and I am going with him. I would like other treatment options such as Interferon & Ruxolitinib to be addressed, and I would be grateful for any advice on how best to approach this.
I am also considering asking if he can be referred to an MPN specialist.
Thank you for any advice.
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moongazer100
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You have done a great job describing someone who is hydroxycarbamide -intolerant and who would benefit from another treatment approach. The JAK inhibitors are first-line treatments for MF. It is a bit surprising that ruxolitinib has not already been discussed as an option. It would certainly be preferable to busulfan for most people. There is no question that he needs to be seen by a MPN Specialist. Suggest that this is not a "can be referred" issue. This is a "will be referred" issue. The MPN Specialist has the expertise to ensure optimal treatment and can competently review all treatment options, including ruxolitinib and interferon.
Suggest that you help your father understand the the "not complaining" approach to healthcare is contraindicated. There is no reason to needlessly endure adverse effects when there may be much better treatment options. While we each must be our own best advocates, sometime we need help to do so. He is fortunate to have someone to help advocate for his needs.
Dear friends thanks for all the information the last time I saw the hemo DR I was not given more than 5 minutes I have been well this past 4 and half years. But recently feel something is changing , lack of energy, concentration. I have not been offered pneumonia jab did not know there was one So I'll take my wife with me next time. Thanks for all the information Instow 1
With a change in symptoms, you will certainly need more than 5 minutes for your appointment. It will be important to sort out whether this is a medication side effects, the MPN, or something else.
It is a bit odd that you were not recommended for a pneumonia vaccination since that is standard preventative care. I had one a couple of years ago. Suggest that you get this as a single vaccine. I found that getting pneumonia at the same time as flu was not a good idea. I reacted rather strongly, which I usually do not do.
Taking a second set of ears to your next appointment sounds like a very good idea. Suggest going with a written agenda and list of questions. I always do this and give a copy to the doctor as well.
Without knowing your father’s full medical history it does appear that ruxolitinib, or if approved in your father’s country another of the even newer JAK-inhibitors, would be a more logical next step than busulfan, which is an old non-targeted drug with potentially bad side effects.
It sounds like a second opinion from another doctor who is an MPN specialist would be helpful, as well as challenging the current doctor on why they aren’t considering any other options than HU and busulfan.
Hi, Are you in the UK? If so you can ask to be referred to an MPN specialist either at your current hospital or another. I asked to be referred to Professor Harrisons team at Guys, eventually it was my GP who did that for me. Depending where you live you don’t have to go in person, it’s good if you can, but you can have telephone consultations. I went in person once and since spoken to them on the phone, still see haematologist at my local hospital.
You’ll also get lots of advice and information on this forum.
I am also post ET MF and over 70 (just!) Currently I am on Ruxolitinib. I also have EPO injections twice a week to help with anaemia. I have had blood transfusions too, fortunately not recently. I think your father would benefit from seeing an MPN expert.
Hi, we are in Yorkshire, UK. I am going to ask for a referral to Professor Harrison for his treatment to be reviewed.
I have found this forum very informative.
I will have to found out more about the EPO injections as Dad is also anaemic. He recently had a transfusion (for the first time) when admitted to hospital with pneumonia as his Hb was low. I wondered if this might be why Ruxolitinib has not been considered as I understand it can cause anaemia? How do you find the Ruxolitinib? Was it suggested by Professor Harrison's team?
I am also in Yorkshire (South) my local haematologist and Guys suggested Rux. I had some transfusions when first on it, I was anaemic before I started on it, however although still quite anaemic I’ve not needed one recently. I had iron tablets and iron infusions previously but they didn’t work.
It is definitely worth talking to the team at Guys, they gave me a lot more information than my local hospital. I am hoping to go on a trial drug with them, I have a phone appointment with them next month, it all depends on my blood results.
There are also good MPN specialists in Leeds (St James’) and Sheffield (Hallam), so you may not need to go as far as London.
Rux can exacerbate anaemia but another JAK inhibitor, momelotinib is currently in final stages of approval by NICE and has shown better results in some anaemic MF patients , so maybe ask about that too?
Hi, many thanks for your advice. He definitely needs some more up to date advice and treatment. I have found out so much from this forum. I am trying to educate myself on the options so that I can ask the Haematologist this week why alternatives are not being considered. I am also going to ask for a referral to Professor Harrison's team.
I believe that Leeds is a good hospital for MPN treatment and stem cell treatments etc . There are specialist MPN consultants there . It’s definitely closer to home !
I would definitely recommend seeing a specialist MPN consultant .
others on here have already given good advice. You definitely need to see a MPN specialist, Prof Harrison is a excellent choice if you can see her, others on here have experienced delays in seeing due to letters getting lost etc, so persistence is essential, if your local Haem has referred you I would call or e mail Prof Harrison’s office to check it arrived, if not e mailing the letter can be better. Re the various drugs, on the MPN voice website there is an excellent section on the various drugs, worth a read. I havnt read it recently so I don’t know if it has the latest MF drugs. If you do see a expert you may wish to ask them if you could record the consult on your phone, that can be very useful.
Good luck and as the saying goes “ nothing can take the place of persistence “ (but polite of course) 😀
I was put on ruxolitinib for my pv without having to ask. I also take clopidogrel. Recently I progressed to MF and became anaemic. At this point my ruxolitinib dose was increased from 10mg twice a day to 15mg twice a day along with 1 iron tablet every other day. You should stick out for ruxolitinib.
Carol.
Ps I don't know why everything is underlined. I must have pressed something but I don't know what. 🤔
Hi Carol, thanks for your reply. I am hoping the haematologist will be willing to discuss alternative treatments such as ruxolitinib. Has it made your anaemia any worse? When my Dad has asked about taking iron tablets he has been told it won't make any difference so it is interesting to hear you take them. Was this suggested by your doctor?
My consultant prescribed the iron tablets. I think she's hoping taking them will delay the need for epo injections or transfusions. They have increased my haemoglobin so it's working. Ruxolitinib reduces all counts. My dose was increased because my white count was still rising. The increased dose has reduced them slightly down to 38 at last test. It's a balancing act, increase rux to reduce white count, take iron to counteract the reduction in hb.Just have to wait until next blood test to see how it's going.
So it seems like your dad and I have had a somewhat similar journey. I was diagnosed with ET in 2008 and MF in 2019. I started on hydroxyurea in 2019 until June 2023 when I was switched to Ruxo when I became “pre-transplant”. Anyway, when I was on hydroxyurea, I had all kinds of breathing issues. Over 2 years, I had pneumonia, I got diagnosed with sleep apnea, COPD ( I never smoked), and I had a terrible chronic cough. When my transplant dr switched me to Ruxo, all of that disappeared. I felt so much better. My pulmonologist was even shocked.
I would definitely find a mpn specialist. Your father should not have to suffer through this. I wish him all the best.
Hi, thank you for your reply. It does sound very similar. Until this January Dad had been really fit & healthy, spending hours gardening & walking for miles, no problem. Dad has also never smoked. Since having this bout of pneumonia he still has a persistent cough. It could be coincidental & nothing to do with the hydroxy, but I’m not sure. It’s good to hear your breathing problems cleared up once you started the Ruxo.
hello, I have been diagnosed with Et , then after bone marrow biopsy with PMF . That was 5 years ago. I am on peg interferon (45 mg. Every three weeks) and aspirin daily plus iron 4 tablets a day. Peg interferon was thought first couple of months but now my body is tolerating it very well.
Taking about specialist of our rare diagnosis I got recommendations here for a specialist .I did not feel my doctor from hemotology department in our local hospital fully understood my condition. I believe the lady who has found my new doctor was Maz. She was extremely helpful and kind and understood my concerns and worries.
Iam really happy with my new doctor which Iam seeing once a year at the moment. Always feel so reassured after my visit and he always suggest different things etc. so glad I joined this group years ago
I too could not tolerate Hydroxy. I had three haematologists before one agreed to change my medication from aspirin to clopidogrel and an alternative chemo drug. My life was purgatory on Hydroxy and aspirin caused internal bleeds.
You have to be firm about what you will accept as many of the doctor’s decisions are based on cost.
It strikes me that Ruxolitanib might be a good option for your Dad.
There is a list of worldwide MPN specialists and your Dad would certainly benefit from seeing one.
My husband has post PV primary MF he was on hydroxy however it was absolutely wiping him out his iron levels were on the floor.
In 2019 he went onto ruxolitnib and I can honestly say it's been amazing it's reduced his spleen back down in size .
All his bloods are in normal range now . His bloods have been stable for the last 4 years .
He's had no side effects at all from ruxolitnib.
He's only ever had one bone marrow biopsy his consultant said if his bloods ever change then they would do another biopsy but in the mean time everything is stable .
He was diagnosed at 40 with PV he will be 52 this year .
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