Maz, I wonder if you could get some clarification from Professor Claire Harrison on the risk of Leukemic progression in the long term use of hydrea.
I ask this question due to a reply from ‘Hunter’ to ‘Bobthecob’ on the forum. ‘The increased risk of Leukemic progression is also now known. Per some findings it takes use of at least ten years for this risk to manifest’.
As someone who has taken hydrea for five years, I am left rather concerned. I was always under the impression the ‘risk’ of Leukemic progression had not been proven. Do we now have evidence to prove otherwise?
I’m sure others on this medication will also be concerned.
Thanks Mary
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mhos61
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Hi Mary, , the only reference I found was a warning on a US site that the Droxia form of HU , which is a brand I think and seemingly used for Sickle Cell Anaemia can cause Leukemia in very rare cases. I haven't seen a reference directly related to Hydrea / Hydroxycarbamide. But that's not to say there isn't one and it would be helpful for you to know but I think if so the risk will be very low.
Linked with the warning was the known one regarding skin cancer and to take care by covering up and use of high factor sun cream, which is a timely reminder to those taking it.
Morning Mary. I was under the impression the long term use of Hydrea could transform into leukemia but it is rare and also our condition could likewise but again rare although I cannot remember the exact percentages. Tina.xx🤗P.S. Where have my beautiful Begonias gone??🤔🤣
The 10-year quote is from a presentation by Dr. Richard Silver. The concern is echoed by others in the MPN treatment world. The warning about the risk of leukemic progression is also now built into many of the drug education literature resources about hydroxycarbmide (aka hydroxyurea - HU). online.epocrates.com/drugs/...
Dr. Harrison does address this in her article "How I treat ET" (2013), Regarding HU she states "...but carries the potential un-quantified risk of slightly increasing transformation to leukaemia." She makes mention of this risk n some of her other publications as well.
Hopefully Dr. Harrison can weigh in in the most recent findings in the literature. I would also be interested as I have never seen a quantified risk associated with long-term use of HU, just repeated statements that the risk is present, but thought to be relatively low.
The truth is that all of the medications we use to treat MPNs have a risk/benefit profile. Not treating the MPN adequately also has very significant risks. We have to weigh each of our choices in light of how our MPN presents and evolves, our own treatment goals, preferences and risk tolerance. We also each react differently to each of these medications.
What matters the most in my view is informed consent. We cannot make good decisions for ourselves without full disclosure of all of the risks and the benefits of each of our choices. For what it is worth, I think that HU is a reasonable choice for some people. It is a choice that needs to be made in a fully informed fashion.
The understanding of MPNs and treatment for them is evolving and progressing. It will be very interesting to hear Dr. Harrison's opinion on this issue based on the most recent findings and thinking about out treatment options.
Ditto Mary. 'Now known' does give cause for concern as i'm in my 13th year of taking Hydrea. I always knew it 'could' transform but I was unsure whether it quantified our risk with our actual Mpn. Tina.xx🤗
Hi Tico, I’m not a big fan of Hydrea, but it doesn’t seem as bad as portrayed by some haems.
« The study provided clear data in favor of hydroxyurea in reducing the risk of hematologic transformation as well. In the hydroxyurea group, the rate of transformation of all types was just 0.1 per 100 person years, while in the phlebotomy group it was more than 10-fold higher at 1.1 per 100 per person years. Two patients in the phlebotomy group and one in the hydroxyurea group developed acute leukemia. Notably, PV in 8 patients in the phlebotomy group transformed to myelofibrosis, whereas none in the hydroxyurea group did. »
Thank you Manouche. That link was an article i'd read before with the percentages you gave but couldn't find it. Hydrea was a Godsend for me when I was put on it back then plus I wasn't given a choice but I had also had my 1st stroke and was very symptomatic, within a few months the symptoms were managable. I was 38 when diagnosed Etjak2 postive and did go onto have another stroke in 2015. Touch wood, i've never had any side effects from Hydrea!🤞Tina.🤗
Thanks for highlighting what appears to be from many aspects, a hydroxy favourable article. It’s uplifting for someone on this drug to read something positive.
I do hope that Dr. Harrison can weigh in on this. What I have been hearing in the presentations by Dr. Silver, Spivak and others is that it is now clearly acknowledged as a risk. I expect this is more of a growing concuss than any single piece of research or a bi change. It is very clearly stated as a risk in the literature, though that is not a new concern per se. I would not want anyone to be unduly alarmed about the risk of leukemic progression. I expect the risk is relatively low. The risk has to be balanced against the benefits of cytoreduction and compared to the other treatment options.
Thank you for bringing up the question about this issue. This is a great opportunity for us to learn from the discussion, which is the great thing about this forum.
Hi Judy, I very rarely even think about it but I must admit when i'd seen Hunters reply to Bobthecob 'it is now known' even I had slight concerns as i'm in my 13th year of taking it but the main concern is the high doses i've been on from the start for long periods of time. At present i'm on 3 every day, at my insistentance as Haematologist wanted me to carry on with 4 every day but I refused. I was also on 5 every day for a long period of time but I suppose we have to balance the risks against further strokes with the small % of transforming to leaukmia.Tina.xx🤗P.S. I hope you keeping safe and had an hug or 2 of the Grandchildren.
Lovely to hear from you. I agree it must be a worry if on a high dose, hopefully, Prof Harrison can give us some confidence. Hydroxicarbamide works well for me and I don’t feel I want to change drugs, even if I could.
Grandchildren are all good and I’ve had lots of hugs. 🤗
I would also like to know the answer to this question!
My understanding is that there is indeed evidence for a correlation between HU use and leukemic progression. However, correlation does not always indicate causation. Critics of the theory that HU is leukemogenic have suggested that the correlation between HU and leukemic progression is simply due to the fact that the population primarily taking HU (higher platelets, age >60/65, other blood counts out-of-range, etc.) is at a higher risk for leukemic progression anyway. If the population mostly taking HU is at an inherently higher risk for leukemia, it would make sense to see an association between HU use and leukemic progression.
Thanks for raising this Mary,I hope Maz weighs in after asking Professor Harrison. Tina.xx🤗P.S.Fountain in Seville is lovely but those beautiful Begonias stood out, probably because red is my favourite colour! 🤣🤣🤣
Also interested in more information on this, though I suspect, as Hunter suggests that there is no clear answer. as I understand it, there is also a risk of leukemic progression if an MPN is left untreated? I started taking it last year at the age of 52, so am likely to be on it long term so long as I continue to tolerate it. For me, having had a dvt prior to my actual diagnosis, but within the previous 10 year span my haematologist believes I had ET Jak2, I think the benefits outweigh the risks, but like any risk/benefit situation, this should be reviewed regularly expecially as more research findings come about.
Hydrea has worked well for me to date, I really hope it long continues to; however, if there is more ‘now known’ evidence available to suggest its part in leukemic progression I would like to know that, so I can make informed decisions on potentially looking at different treatments.
I understood that the greatest risk of leukemic transformation with HU was when it’s used before/after Bulsulfan, radioactive phosphorus or similar. Any thoughts?
Thank you for raising this. I have ET Jak2+ and have been on Hydrea since 2016. I have recently also been diagnosed with Prostate Cancer, which is under control with Hormone therapy medication, but the use of hydrea puts the use of chemo as a potential problem. Fortunately I have an excellent team of 'ologists' who talk with each other and me, but the prospects for transition would be very interesting.
Hi, Mary. I’ve been on Hydrea on and off over the last 13 years. In 2016, when my original hematologist thought I was progressing from Et to PV, He took me off of it and put me on Jakafi. I was thrilled to be off of Hydrea, But then my hemoglobin and red cell counts began to drop and my platelets began to rise even more. I developed anemia. I finally got an appointment with an mpn specialist in 2019. After my BMB showed MF intermediate 1, She took me off the Jakafi and put me back on Hydrea. She also put me on Fetratinib. I’ve had very few side effects, except for fatigue and muscle weakness, and my numbers have been pretty stable except for a few blips here and there.I believe everyone’s situation is a little different on this site. And every drug will always give you a list of side effects but most are rare. I do worry about leukemic progression, but I don’t know if that’s due to the medication or just because that’s natural for some people who have Mpns.
I have now seen two specialists, both of whom agree that there is no “proof” that HU causes leukemia. No proof doesn’t necessarily mean that it can’t but they haven’t found any correlation. The truth is people with sickle cell have been taking it for years and there hasn’t been evidence of those people having issues of transformation to leukemia. So it’s hard to argue that it does and it’s potentially really just the disease progression that can sometimes cause it. One of my specialists actually studied under Dr. Spivak, who is seemingly against HU, and he recommended it, surprisingly to me. It took a while for me to process this as I’ve always heard that HU increases the risk in transformation. There is still the question though of younger people being on HU for a long period of time. Unfortunately there aren’t many studies for that as most people with an MPN are later in life, thus starting HU At 60+ isn’t as big of a concern as potentially starting it at 40.
As my first specialist said it all comes down to risk/benefit. As he said, even Tylenol has risks, although I would argue that I’d rather take Tylenol everyday than HU. But it all comes down to risk profile and symptoms, etc., and with other treatment options available there might be a better course of treatment for each individual. But I’m coming around to the notion that HU isn’t so bad after all, and depending on each individual’s case it definitely could beat the alternative.
mhos61, look further into K2MK4 only from grass fed sources to incorporate into your diet as the information I found years ago only related to that form for inhibiting progression to leukemia. This link is only referring to K2 in the article which could also include K2MK7 that is availlable in non-synthetic supplement form.
Thanks Maz. I think the majority of patients who read the information provided at the point of diagnosis properly realise the potenial minute risk as its still unknown, but it certainly reasuring to have it confirmed. Tina.x🤗
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Taking extra Hydrea on weekends
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