My Haematoligist has agreed to put me on interferon. She has said it may not help with the fatigue, hopefully she is wrong. She also says the breathlessness isn't down to the hydroxcycarbamide despite the fact it's listed on the side effects.
I will see how I go while on the interferon.
Great that your haematologist is working with you! Best of luck with it 💚
Great. I talked to my haematologist. Although he is very nice and knowledgeable, he doesn't believe interferon is convincingly better than HU. How can I convince him?
Show him the research on the long-term superiority of PEG-IFN for PV treatment. It is the only potentially disease MPN modifying agent we have now. It also is superior in terms of preventing disease progression. It is true that HU provides a more rapid response in terms of decreasing hematopoiesis. It really comes down to a matter of your treatment goals, priorities and risk tolerance. HU and PEG each have a risk/benefit profile. The driving factor is your preference when evaluating these choices. It is your body - your choice.
Thanks, Hunter. My case is Jak2 ET, so that is the reason doc is not convinced that PEG is better than HU for ET patients. But I am concerned long-term side-effect of HU. Any suggestions ?
HU and PEG-IFN are both recognized as first-line treatments for ET. They both achieve cytoreduction though different mechanisms of action. Each choice has a risk/benefit profile. PEG-IFN is generally preferred for patients age<60 specifically because of the risks associated with long-term use. Some MPN specialists prefer PEG-IFN for all patients. Other prefer HU. Others leave it up to the patient to decide which is preferable (see protocol by Dr. Harrison below).
Be aware that there is a significant cost difference. HU costs $70/month. PEG costs $4000/month. Some formularies make it more difficult to access PEG and it may require extra work by the doc to get it approved.
The bottom line is that this is your choice. The decision is determined based on your treatment goals, your risk tolerance, your priorities and preferences. If you do need cytoreduction at this point in your treatment for ET, then make clear what your preferences are and why. Base this on the facts regarding each choice and which risk/benefit profile you prefer. it is your body - your choice.
Here are some references you may find helpful.
mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
onlinelibrary.wiley.com/doi...
Suggest you also review the information on both HU and PEG from reliable sources.
online.epocrates.com/drugs/...
drugs.com/monograph/hydroxy...
online.epocrates.com/drugs/...
It sounds like you have a good doc to work with. Suggest you have a conversation that is based on your treatment priorities/preferences and supported by the facts regrading each choice.
Hope this helps.
Thanks, Hunter, for your thoughtful advise. I agree with you on the treatment evaluation based on my specific situation here. I don't expect the cost of PEG is that huge vs. HU. I will let you know how it comes after talking to my doctor. Thanks again for your great suggestion.
I’ve been told by two different hematologists that interferon will cause worse side effects than hydroxyurea and the other medications, such as anagrelide and jakafi. I’m post ET MF.
Yes. Agree with side effects various to individual. Age is also big impact factor to consider.
I would note that we are each different in how we respond. I could not tolerate HU. I experienced toxicity even at very low doses. So far, I am tolerating PEG with no side effects at all, And responding really well to it. Hopefully it will stay that way.
The bottom line is that we are each different on how we respond to HU, PEG and any other treatment option. We each have to weigh the risks and benefits of each choice and decide based on our own priorities and preferences. There is no black and white answer to this. It is a matter of judgement and always should be the patient's preference that drives the decision.
All the best my friends.
I agree with you completely. I'm glad it's working for you.
Glad to hear you will have the chance to try PEG-IFN. So far I have found it to be far easier to tolerate than HU. I hope you find the same.
Breathlessness! - I too have been told I shouldn’t experience it. It’s as if my lungs can’t keepUp with my body. When really bad I’ve had to have paramedics out.
I took my first pegasys jab on Tuesday.
Hi Wyebird.
Good luck on your new MPN treatment path. Hope you experience only good things!
Have you got to stay on hydrea until the Pegasys kicks in?
I have primary mf I suffer severe breathlessness daily iam with st guys and Thomas I was told by them that breathlessness is a common symptom as I blood is produced differently we produce unhealthy blood cells causing us to have less oxygen in our blood streams and that’s why we suffer with it but iam not an expert I just took the docs word but thought it might be interesting pass on
Thank you, I’m also under Guy’s aren’t we the lucky ones. I’ve never been told that though. It does make sense.
I hate the breathlessness it's so debilitating, and my Haematoligist just dismisses it so frustrating.
I’m still on anagrelide and hydroxi. Neither have been reduced because my platelets are up again!!!!
The hope is to come off both.
I don’t hold my breath.🥴
I have to have blood tests via the GP followed by phone conversations for 3 weeks then back in clinic on the 19th July.
When do you start yours?
I understand how you feel. I am on two medications( hydroxyurea and fedratinib) for my MF,as well, but my platelets have been very stubborn and won’t go down. They are around 800,000 right now.
Good luck with Pegysus. Hope it works for you. Drink plenty of water
Good luck to you!
I am in the early stages of the transition from Hydroxycarbamide (HC) to PEG-Interferon right now. The switch is being made, temporarily at least, because I have had a leg ulcer for over a year and the HC chemotherapy may have been preventing the ulcer from healing ...
So far, I have had just the first two PEG-Interferon injections, both administered for me by the haematology nurses at the big hospital; I have yet to climb over the psychological barrier that needs to be crossed before I can inject myself ... In any case, the treatment itself may need adjustment. The latest e-mail from my specialist haematology nurse includes the following:
"Your immune system bloods are a bit lower than they were so if you have any signs of infection, you must let us know immediately.
I have asked the nurses to take your blood test on Monday and wait for the results before giving you the injection as we will need to omit next week's dose if they have dropped any further.
So, be prepared to be here for a little longer than usual."
Help!!!
The side-effects after my second injection (21 June) were less severe than after the first one (9 June). So far, the most problematical effects for me seem to be: a) having to rush urgently to the loo during or soon after the first meal of the day; b) fatigue/lack of drive to get much done (though I was already suffering from that to some extent before I started the new treatment).
Good luck to everyone who is also on this pathway!
In the UK, do you have access to Besremi? (Ropeg) It's approved in EU. It is suggested to be better than regular PEG with fewer side effects and 2-4 week intervals. It's not yet approved in US. Google "Continuation PV" It's been studied for years in Euro and approved in 2019. It takes about 3 years to really start working, it brings down the JAK2 % for most users and I think I've seen it helps for other mutations
It would be interesting to hear your Dr's opinion about it.
On breathlessness, have you, or others here, checked your blood Ox with the little finger device? I get sometimes hard to inhale esp when inactive, but ox is ok, and no exertion problems. Count me for a vote to agree about hard breathing and ET.
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Any success with turmeric? Or anti inflammatory diet? 
MF transplant - successful stem cell boost
