My 18yr old son has JAK2+ ET. Right now he only takes daily 81 aspirin. During my discussion with the hematologist, their drug of choice, if needed, is hydroxyurea. Everything I’ve read and have seen on this board is that interferon (peg) is preferred for the younger ET patients. She said HU is better tolerated and interferon has terrible side effects. Can anyone give me articles, studies or info on both? I would really prefer he not be on HU (if it ever comes to that) but I want to be armed with documentation. I’m sure the drs roll their eyes when they know I’m coming or calling... I always come with questions and research. Knowledge is power and I want my son getting the most appropriate care! My son would prefer interferon if it becomes needed as well. Thank you in advance. 😊
Hydroxyurea vs interferon for younger patients - MPN Voice
Hydroxyurea vs interferon for younger patients
In my case I moved to a different consultant who was a bit further away (Manchester vs halifax) but who actually had an interest in MPNs and so could be bothered to pay attention to the latest research. Hopefully this is an option for your son as it is much better when you feel you can trust your dr and not have to do the research for them and then convince them to listen to it. Particularly if their hands are tied by their trust’s prescribing policies, and it would be an uphill battle to get that changed.
At some point he will transfer to an adult MPN specialist. He was diagnosed at 17 and is going to a Children’s hematologist. They have been great, but they have very little experience since it’s so rare in youngers. Being at Children’s hospital is wonderful right now when he is at low risk, but eventually it will be nice to transfer to specialists. His current doctor will help in that. I hope your new doctor is performing well in caring for you!
Ah I see, it’s good you like the team, hopefully someone will be along soon with some research you can share with them and it sounds like they could be open to it. Perhaps they should get in touch with one of the specialists themselves like the team at guys for advice? I remember I did a lot of reading when I was diagnosed and the old fashioned advice is to go for hydroxy at a certain point and based on certain criteria, but the latest research requires more nuance and thinking about the individual and their symptoms and circumstances. That’s what my current dr does, which is great. Hopefully given some time your son’s team will be able to do that.
I will pull together some of what I have seen presented regarding HU vs PEGylated Interferon and forward to you. In the meanwhile a few thoughts:
1. PEGylated Interferon is now considered a first-line treatment by many MPN Specialists for MPNs, particularly for younger patients. Some MPN Specialists (my own included) now prefer it.
2. The decision of which medication to use is a collaboration between the patient and the physician. The patient's preferences are just as important as the physician's. This is not a black-and-white decision. There are risks/adverse effects with both of these medications. The decision of which risks to take are the patient's choice - not the physician's.
3. Physicians who do not listen to their patient's (or parental) concerns should be fired as the provider. Physician's who roll their eyes should be fired twice. The patient-physician relationship must be based on mutual respect. When the respect does not go both ways, the relationship should be severed.
4. Your son has a fundamental right to say "NO" to hydroxyurea or any other medication he is not comfortable with. At the age of 18, I would agree with him that HU is not the best choice. It works fine for some people, but mostly for older adults.
5. As I recall, he is currently being seen at a hematology clinic in a pediatric hospital. It is unlikely they have much if any experience with MPNs since they are so rare people his age. I would make no decisions about medication without consultation with a adult MPN Specialist.
All the best to both of you.
Thanks Hunter! I know we have talked about this at length! Right now I’m not in a total hurry to switch, but it is an unavoidable end result. I’m glad we have Seattle Cancer Care Alliance fairly close and they have several MPN specialists!
I wasn’t given any information just to the option was having 20years ahead of me as opposed to 2 years if I didn’t take HU. I was opposed to it from the start and have never felt quite well. When I questioned it later I was told they don’t tell you because you won’t understand. They should give people credit for being able to think for themselves and at least the opportunity to ask questions if you don’t understand. I feel I should have been given all information on the options available but wasn’t. Good on you, find out everything you can for your son. In the institution we are just a case no snd I know I feel like a Guinea pig. Put on hydroxyfor life but had I been a few months younger it would have been different. Categorised in a group of 60 to 80 year olds I had no underlying health issues only tiredness and mouth ulcers. Feel bitter about it all
Hi, I have been on HU for 5 years. I said at first consultation when diagnosed that I would rather not go on it and the Macmillan Nurse laughed in my face and no comment from Haematologist. I know I am late 60s but still would have liked to discuss at that stage. Having said all of above I have never had any side effects and until the situation now am leading a totally normal life. I think at the gentle age of 18 you need all the discussions you can have with consultants. There may be a prediction of life expectancy with one or either of them to consider too. If you could get together some questions before next consultancy might be a good idea. Hope all goes well for you and your son. xx
Many doctors follow the age-driven protocol for MPN treatment because they lack the knowledge to do otherwise. MPNs are rare disorders and most docs, even hematologists, just do not know how to individualize treatment for MPNs. That is why it is so important to see a MPN specialist. While the treatment protocols may be the correct treatment for most patients, they are not the right treatment for all patients. Best to find a doc who knows the difference.
Regarding the care you receive in institutional settings, it can be a real problem. Providers have limited time allotments for each patient and have to blow through appointments as quickly as possible. They often do not have time for questions and concerns. Sadly, some providers cease to care and just don't want hassles. Individual providers and systems of care do need to be reminded of their ethical responsibilities at times. Basic medical ethics include: explaining the benefits and risks of each treatment proposed, explaining all of the alternative treatments, responding to patient concerns and questions, respecting the patient's right to decide. Failing in any of these steps is a core violation of the physician's responsibilities and the patient's rights.
I have learned (the hard way) that assertive patients receive higher quality care. Passive patients do not. As a patient, we each have to take responsibility for ensuring we receive the medical care we need and deserve. Providers work for us, not the other way around. Medical providers can and should be fired and replaced when they fail to live up to their responsibilities. That is your right as a patient to determine.
There are wonderful medical practitioners available. Many docs and nurses take their responsibilities to heart and seek to provide the best care that they can. These are the providers you want involved in your care. I have found a truly terrific set of providers who I like and trust. I work with them as a collaborator in my own care. They have knowledge that I lack, but I know my own body and am clear about my preferences. Working together with mutual respect is how I have the best outcomes.
All of the best to you. I hope everyone can attain the high-quality care that they deserve.
I am so sorry! I know there are dr recommendations on this site- would it be possible for you to find a new physician. My son’s drs might not be experts, but they do try to listen. I take them case studies etc. The hematologist I spoke to the other day, wasn’t our regular (and I’m glad- she wasn’t very ready to listen). At least the current 2 I’ve been working with will read what I bring. They have agreed to test Nathen on curcumin and work with me on other areas. I hope you can find someone who will work with you!
I did question it and was met with measured hostility. How dare I question the experts. I am now afraid of the consequences of coming off HU after taking it for 4 +Years. What would happen to my platelet count then. They have me over a barrel
As I was researching this (on this board), I read people’s accounts of transitioning from HU to Peg. They just took both for a bit. I didn’t get the impression it was a terrible ordeal- they may have had more receptive care givers. I’m sorry you feel over a barrel! It’s not a good feeling to have someone not listening to you about such important issues! I’ll pray that you can find someone more willing to hear you!
It is most certainly possible to transition from hydroxyurea to another medication. People do this all the time. If you are met with hostility when you want to explore all of your treatment options, then it is time to find providers who will provide you compassionate and ethical medical care. Please know that you are not over a barrel. You are in charge of your own medical treatment. It is your body. It is your choice what to put into it. You do have to be willing to advocate for yourself.
You have multiple options to move forward. 1. You can certainly seek expert consultation with a recognized MPN expert. Here is a list mpnforum.com/list-hem./ . 2. Fire your current provider(s) and find someone who will provide the quality of care you deserve. 3. If your treatment has been as been unacceptable - file a formal complaint. Providers do need feedback, supervision, and at times discipline. 4. Do your own research about your treatment options and go to your appointment prepared to ask specific questions.
No one should ever accept poor quality care and condescending attitudes from providers. You should feel heard and respected. That is your right as a patient, but you may have to advocate to make it happen.
All the best to you
Thank you this helps a lot
I also found this....targetedonc.com/view/more-h...
Hi Nmom, did you read what the famous Dr Talpaz wrote recently about ET and interferon ?
Moshe Talpaz, MD: I studied it in 1998; it was a long time ago. A patient who I started with essential thrombocythemia but JAK2 positivity. I started to treat her in the late 1980s. And she developed a complete molecular response after 25 years. She is in remission now, after 30 years on therapy. She still gets it on and off.
Here are some facts. I have plenty of opinions too. HU poses a grave risk to any couple contemplating pregnancy. These drugs have very different side effect/toxicity profiles. HU is cheap and interferon is expensive. Interferon has caused serious side effects when given at higher doses than is customary in treating MPNs. There is good reason to hope that interferon can suppress all evidence of the disease in a small, but significant percentage of patients. This is not considered a cure. I would gladly settle for this myself.
It seems that your son does not now require suppression of blood production.
By the time he does, the two of you should find an expert in MPNs. You both should do some work to understand this disease, because GPs and other specialists know very little. The quality of your relationships with medical professionals is very important. I would not set much store in the opinions of a pediatric hematologist.
My final opinion is to go with interferon when cytoreduction is necessary. I am prejudiced.
Thank you! Glad to have opinions from people dealing with the issue. I would hope that if he ever needs cytoreduction there will have been some huge scientific advancements already made. His platelets run 900-1200 so they are quite high. Not sure how long they will monitor that level, but so far he is a typical active 18 yr old. His saddest news was no SCUBA diving. They may consider allowing a more shallow dive (no deeper than 30ft- which is especially okay for night diving!). I’m just getting my ducks in a row with info! Thanks for your input-greatly appreciated!
Best to begin treatment before it is indicated by a vascular event. Even young people get those. Where he ever to have a serious accident, platelets at that level might not lead to a good outcome. Peginterferon works at a genetic level rather than just killing off blood cells.
Thank you for asking this question as it's something that is really relevant to us at the moment as hubby's bloods are playing up & we have phone consultantation next week. (ET/PV Jak2+).
We think it might be that the conversation will be regarding medication in the very near future & this has helped answer a few of my concerns.
Hope your son manages to avoid the need for a while yet but you are both listened to when needed. Stay safe x
Wishing your son well on his MPN journey - Hopefully you find this site and the people on it very informative and supportive. My only advice - please don’t use Google to research 🙂
In total agreement on google. I try to look up treatment info vs doom and gloom info. It’s already anxiety invoking to have your child diagnosed with blood cancer - even if they use the word benign. I love this site. It is informative and positive. I was apprehensive at first, but now I really value this group!
I can see you’ve already had lots of good advice but just to reiterate, here in the UK Pegasys (pegylated = slow release, interferon) is definitely now the preferred option for younger patients who need cytoreduction and are likely to be on treatment for many years.
Side effects are much less on Peg than regular interferon so don’t be too scared by what you read about those, plus we’re typically on much lower doses than other interferon users.
Good news is that if your son is low risk he may be fine to stay on aspirin only for many years and just be monitored. My counts hovered around the 800-900 level for many years before I started Pegasys.
Good luck!
Andy
Thanks! I love hearing that people are okay for many years on just aspirin! It’s encouraging. Especially since he was just diagnosed Dec 2019- I need encouraging! I don’t know if the person I spoke to is even aware of the new interferons or the latest research. She seemed intent on letting me know HU was better and preferred. I’m glad she’s not my normal physician! 😊. Thank you for you input! It helps bolster our decision should Nathen need to go on cytoreduction!
Nmon check on Google Interferon versus Hydroxiurea for younger but 2020 or 2019 because Hydro is a older drug. I can't send these articles here or I don't know.
Or you can tell me your Facebook and I could sent it.
Good luck!
Questions are good - never stop asking them.
I don't know whether there is any difference in the effects of different drugs for young people, but I have been on both HU and pegalated interferon. I tolerated HU very well with minimal side effects and it is a very well established treatment. Peginterferon has far fewer side effects than just plain interferon. For me, these include aching joints and a slightly fluey feeling but once dose of Paracetamol sorts it out. I am more fatigued on Pegasys, which would be a bit grim for a young person, but I don't know if that would be the same for everyone.
Hi Nmom
I am sorry to hear about your problems. You son should be fine with good care.
If I was in your sons position I'd go with the interferon.
Make sure they start with a really low dose then build the dose up slowly to balance the side effects against platelet reduction. (This is what Professor Richard Silver from New York reccomends.)
Good luck,
Jawas
Hello Nmom,
I have recently joined a group in Australia called
MPNmates google it .
I too am jak2 positive and take Hydroxy. The side effects vary and I don’t believe it is a good option for a young person. My grandson is the same age as your son and I would hope he never has to take it.
As your son is so very young, I really think that they could help you a lot.
They are a not-for-profit group and are really keen to find a cure for MPNs and the best available health options for all ages. They are a very active and close knit group. Give them a try.
Steve is their founder and works hard on behalf of all of us with MPNs.
I wish your son all the luck in the world and pray that we will have a cure one day.
Hugs,
Marci
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