Who else is using hydroxyurea at young age? For ET TREATMENT??? Is it okay to use this treatment at young age ???
Thank you ahead for the reply ….
hydroxyurea at young age? : Who else is using... - MPN Voice
hydroxyurea at young age?
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shiela23
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Not OK for long term use because hydroxyurea does nothing to slow or stop ET disease from progressing to post ET myelofibrosis.
Alot of young ET patients do well on Pegasys interferon which: 1) reduces the platelet count so the patient has less chance of developing a blood clot. 2) relieves ET symptoms as the platelet count comes down (spinning room dizziness, easy bruising, night sweats, etc.). 3) slows or stops disease progression to post ET myelofibrosis.
Two problems with Pegasys are: a) is much more expensive than hydroxyurea b) is used "off label" for ET and some hematologists are reluctant to prescribe it for that reason.
Please see the information about the risks of long term use of Hydroxycarbamide on the MPN Voice website. It says
"...there is a possibility that it might in rare cases increase the risk of leukemia."
Therefore NOT a 15% chance over 15 years etc.I was on Hydroxycarbamide for 17 years. I discussed the possibility of AML at the time it was prescribed and my very experienced consultant told me that although it was theoretically possible, he personally had never known a case of it happening.
I really don't mean to be rude but I think we need to be very careful about sharing frightening statistics without stating the source.
For one, I didn’t see where it said she had ET, I was assuming PV, since thats what I have. Also PV progresses into AML with a like 80-90 probability anyways.
Shiela23, the OP, mentioned ET in her original question, so I assume that's why Monarch5000 mentioned it too.However the point Monarch5000 was raising was about the probability of Hydroxycarbamide causing AML, not whether the disease itself is likely to.
I've never heard of PV having such a high progression rate, even to Myelofibrosis. The MPN Voice website says that progression to AML is one of the less common complications of PV. It also says that PV has a 15% chance of progression to Myelofibrosis.
PV progresses to AML with 80 to 90 probability??? Where did this stat come from? Care to share the resource? It’s my understanding that very few PV cases progress to AML.
Being that all studies of PV are that of people over the age of 65 and they are more than likely to die from PV rather than anything it progresses into, I went ahead and done a bit of math, being I started suffering from PV in my mid 20’s, so by the time I’m 65 (what their studies are based off) my likelihood of having aml is substantially greater.
Estimates of PV progression to AML range from 3% - 10%. PV usually progresses to Myelofibrosis before it progresses to AML. Risk of progression to MF ranges from 10% - 20%. The 80% - 90% statistic is actually the number of people with PV who do not progress. There are multiple factors that influence the risk of progression, including non-driver mutations and exposure to certain medications or toxins. It is complex and prediction of individual risk of progression requires a nuanced evaluation of each individual.
Those results are all off studies of peoples upwards of 65 years old. Show me studies of young people then bring that to the plate please
You are correct to think most PV studies include people of all ages (20s-70s at age of diagnosis). Few studies exclusively follow younger patients diagnosed with MPNs in their 30s, like you and I were.
Here is one example of the data you are interested in.
"incidences of fibrotic transformation were: 22% vs 25% vs 10% in those ≤40 vs 41-60 vs >60 years of age (P < .001). The incidences of leukemic conversion remained relatively low and were balanced across age categories (4% vs 5% vs 3% for successively older cohorts) (P = .4)"
onlinelibrary.wiley.com/doi...
There is a fundamental problem in looking at the studies currently available. They are nearly all based on longitudinal studies that started before the newer medications we now have were available. The increased use is the Interferons (Besremi/Pegasys) can very reasonable be expected to lower the rate of progression in all people with PV based on the current research. In particular, the use of Besremi is under active investigation for "low risk" (e.g. younger) PV cases.
While it is of interest, I do not get caught up in trying to assign an exact number to my risk of progression. I know it is higher due to the presence of a non-driver mutation (NF1). I am aware of it but do not sweat it. What I am doing is opting for a treatment plan that focusses on ensuring the highest possible quality of life and lowers my risk of progression.
I am now age 67, having "progressed" from ET 8 years ago I am still going strong and doing well. Wishing you the same or better outcome my friend.
I would go a step further and say that this post should be removed or at least edited, Probably well intentioned but misinformation.
I edited it to remove mention of AML because I could not re-locate the reference where I read about it.
See Hunter's comments above. Perhaps you simply misread the statistics. It's easily done; thank you for removing it.
11 years ago this hydroxyurea Users Guide said this:
science paper
Nothing about AML risk increasing so rapidly then.
Nobody disputes that HU might (rarely) increase the risk of AML, but the risk is small, as MPN Voice says.
I agree that it seems unusual to prescribe Hydroxycarbamide for a young person who needs cytoreduction but I was very concerned about the untrue statistics that you originally quoted. That's why I challenged you.
Hiya,
Well I have been on hydroxyurea since I was 27 and I'm now 52, so it does happen. When I was diagnosed with ET young people with it were looked at like unicorns, we were thought so rare. At the time my platelets were 1100, and a look back at blood tests from my teens showed I had a couple of 600 counts that that was not picked up on. So my platelets obviously had to come down , I did volunteer for a study which give me a chance of treatment with anagrelide, which was new but I got picked for hydroxy.
Hydroxy has worked for me , it has kept my counts stable , and I had no problems with it until I had a prolonged period of fatigue about 5 years ago ,which drs blamed on ET, but since I could no longer function they eventually agreed to try a dose reduction , which they had been reluctant to do since my blood counts were so stable , but a slow reduction in hydroxy did help and I got my normal energy back .currently I am on 500g daily.
When I was first diagnosed I was probably too shocked to ask some questions I should have , and young people questions didn't even occur to drs to answer . As a women under 30 birth control was was an issue , you are told , you absolutely cannot get pregnant whilst taking hydroxy, but drs were equally not keen on hormonal birth control due to increased clot risk , I had to research and debate them a bit before they agreed on balance of risks .
In fact the whole issue of motherhood , was pretty much ignored , as it happened I already had an adopted child and I was nearly 30 , so it was dismissed , as it happened I later took on a second child, but I can see that for some people it would be a huge issue , I hope things have improved.
I don't remember the increased skin cancer risk being mentioned other than in the leaflet inside pill box , I am sure I wasn't as careful in the sun as I should have been , but I'm pale and freckly so didn't indulge in much sun worshipping .
At the time of my diagnosis there weren't really any other treatment options , and treatment was definitely necessary, so I don't regret the hydroxy , I admit , I haven't done much research into long term risks . I know there are some newer treatments , and information is much more available now ( I had to buy a haematology text book to learn about ET) and the people in here are a fount of knowledge so educate yourself and advocate for yourself , but if it comes to it hydroxy can and does work and you can live a pretty normal and productive life with it .
The above reply has jogged my memory , and yes an increased risk of AML , was mentioned , but at the time they weren't sure how much of the increased was due to drug and how much was inherent to ET, I didn't think it was as high as mentioned above , but I'm sure one of the guys on here will know the current research.
Best wishes ,
Caz
I think we must have been on the same trial (PT1). I was randomised to Anagrelide. The trial was stopped in 2003 when they found that Anagrelide wasn't working so well at preventing thrombosis.
Thank you for your reply. Peg most probably wasn’t available at the time of your diagnosis . Your journey is quite inspirational. I’m so glad a low dose of hu is working for you. X
I love the description of us being unicorns quite cheered me up! I was diagnosed at 32 in 1985 and there was much hand wringing by the haematologists then about my age. My experience is similar to yours though I was on HU for 15 years until unfortunately it stopped working. I'd clearly had it for years prior to diagnosis - a very difficult pregnancy and also miscarriages were later put down to me having it at least in my mid 20s. HU was the far more gentle option to the drug I took at first and I'm very grateful to have had it. I was warned not to get pregnant again before they had worked ET out but knew something something was very wrong and we very successfully adopted our second child. HU would have in any case ruled out another pregnancy and as we'd completed our family I chose to be sterilised. I think Pegasys is used now in these circumstances?
I was on the same trial as you and also got randomised to HU but they spoke to the researchers and I was changed to Anagrelide plus some low dose HU when the latter stopped controlling the platelets. Interferon Alpha was also later discussed (no Pegasys then) but it had to be injected much more often and I demurred when the side effects were discussed.
I've always understood the risk of progression to AML was low - it was mentioned - and there was certainly far more risk from not being treated as my platelets were at 1600.
I agree with what monarch5000 said. It's not a good idea. I can only add that there is also a newer drug called Besremi, another type of interferon, which is approved for PV but should work for ET too. The choice depends on what you can get in your country. But the main point is you should push for the Pegasys/Besremi as the first line treatment.
Agree!
I’ve been on Peg Interferon since I was diagnosed with ET in 2020 however after a Bone Marrow Biopsy it turns out I have MF - I was 33 at the time and the reason I was put on this is again because I am at a childbearing age and it is less harmful should I have decided to have more children.
I think if you are concerned with your treatment plan you can suggest the change to go onto Peg Interferon - I found with my consultants they are open to my opinion in terms of the medications I use - as I asked to be put back on apixiban due to the unwanted side effects of Delteparin injections with osteoporosis which the accommodated after I spoke with them about my concerns of using is drug.
Like Monarch5000 states it is probably a cost thing but that shouldn’t mean that you shouldn’t have access to what you feel is right for you.
As the others have already stated, HU is generally not recommended for younger ET patients. This is in part due to the risks associated with long-term use of HU, which include an increased risk of progression to AML, skin cancer risk, and other dermal toxicities. HU is a highly toxic medication with a low therapeutic index (ratio between therapeutic and significant/life threatening toxicities). HU is teratogenic, mutagenic, carcinogenic, and leukemogenic. It is not recommended for people of child bearing years. For people who for some reason must use it then want to have a child, the person must wait after discontinuing HU, 6 months for a female or 12 months for a male. For males, HU can cause hypogonadism (oligospermia/azoospermia). The hypogonadism is usually, but not always, reversible. For this reason, there is a recommendation that males consider sperm banking prior to initiating HU.
While HU is an appropriate choice for some with ET, it is not appropriate for all. Fortunately there are other choices. The other first-line treatment option is Pegasys. There are also second-line treatment options like anagrelide and Jakafi. There is a promising new drug in clinical trials, Bomedemstat. The recently approved PV med Besremi is also in clinical trials for ET.
Generally people in their 30s with ET are not recommended for cytoreduction unless they have risk factors or have significant ET symptoms. I believe you may fall into the latter group. There are treatment options other than HU to address these symptoms; however, accessing the more expensive treatment options can be problematic in some systems of care due the the expense of the other options.
Suggest reviewing your treatment options with a MPN Specialist rather than a regular hematologist. These specialists are more familiar with the treatment options and how best to access them.
Meanwhile, here is some information that may help.
ET Treatment
mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
Hydroxyurea
drugs.com/monograph/hydroxy...
online.epocrates.com/drugs/...
oralchemoedsheets.com/sheet...
ethrombo.blogspot.com/2017/...
All the best as you move forward on your care plan.
The MPN specialists in Denmark favor prescribing interferon in young people at the time of diagnosis of PV and ET because that's when the tumor burden small and is more easily reversed by low doses that are usually more easily tolerated. One minute video by a Danish MPN specialist: youtu.be/TIlzFKLtj0k
I agree with Otterfield, the evidence of AML vs HU is not strong. A large 2011 study for example is below that implicates older MPN drugs but not HU. This is one reason we don't see these older drugs any more.
There is one study of one patient that comes up with a possible AML HU correlation, and some others, but the large study below is more typical. I took HU for a year and had no worries on AML if I had continued.
But there are many other effects with HU as noted in the replies. At your age you should discuss interferon INF with your Dr (likely Pegasys, the other INF Besremi is approved for PV and unlikely to get approved for you). As noted here, INF is the more beneficial therapy over the long term, esp for younger child bearing age patients. It has possibility of stopping progression or even reversing MPN disease, while this is much less likely with HU. But not everyone can tolerate INF (or HU).
--
<<The risk of AML/MDS development after MPN diagnosis was significantly associated with high exposures of P32 and alkylators but not with HU treatment>>
Hey there blood buddy! I started 1,000 my hydroxuyrea daily, just over 4 years ago are the age of 31. I haven’t had any issues; and it’s keeping my PV in check.
Am I the only unicorn here with PV?? Seems you all have ET, which I wish I had rather than this PV crap. Anyone wanna trade??
Oh bless you your reply made me giggle even though we are all in unfortunately circumstance- I’m also ET🙄
I would trade but I wouldn't really want to inflict Myelofibrosis on you!
Hi,I think Besremi will be better. Reading How I trat the polycythemia by Dr Spevak, it can help you. Good luck!
"20 years after diagnosis of PV:
- "85% of PV patients who had been treated with interferon had not progressed to myelofibrosis compared to 59% for the hydroxyurea group and 51% of the phebotomy-only group."
- "overall survival for patients on interferon was 95% compared to 63% for hydroxyurea and 57% for phlebotomy-only."
Source: crt.org/wp-content/uploads/...
Hi Everyone I too have ET and on Hydrea 10 months. I’m 49. The Hydrea is doing its job re reducing my platelets but my skin is very dry atm.
When I read Monarch5000 messages my old feeling of panic came back.
Jenny
Which is exactly why nobody should be quoting statistics without giving the source. The information given about progression to AML was untrue.
Good morning, I’ve only put a couple of posts on this, just wondering if anyone here is from Ireland? Thanks Jenny
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