Question about hydroxy and being low risk PV pat... - MPN Voice

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Question about hydroxy and being low risk PV patient

Cllfairy07 profile image

Hello all. Wanted to know if since I am low-risk and currently on low dose asprin with phlebotomies occurring probably every 4-6 weeks, if I should stick with this treatment or start on hydroxyurea that my doctor suggested me to take? My hct is 45, platelets run from 770-860 and wbc was 13.5. From what I’ve read, hydroxy seems to be for high risk patients but my doctor said I’m low risk so I’m concerned as to why I need to start on it. I was diagnosed in October with PV Jak2 positive. Would love some feedback on this because I have an appointment on the 4th where I am to tell him what I have decided to do. Whether to go on hydroxy or not. I’m only 41 and fear for my little 5 year old , with all of the stipulations that come with taking hydroxy plus articles have said that it can cause cancer later on down the road. Help!

34 Replies

I dont get the low and high risk and what exactly is the criteria to define. I am under 50yrs. My counts at the time of diagnosis were not too high and never had any medical history except two vertigo incidences. I had few symptoms (constant lightheadness and vision problems) which lead to diagnosis of PV . So my doctor directly put me on hydra (no blood letting)and for now all is ok, few symptoms still come and go on own.

Cllfairy07 profile image
Cllfairy07 in reply to neela2020

Glad to hear that you have few symptoms from the hydroxyurea. My doctor told me he had patients on it for 30 years so I guess the best thing to do is try to get things under control then switch to something else if need be.

Your doctor may be concerned that your WBC is too high, the venesections are not getting your HCT down to less 45 and your platelets are above the normal range. Technically you are probably at an intermediate risk level.

You need to discuss your concerns with your doctor. Hydroxy is not the only option, Interferon is a possible alternative but the choice is influenced by your health and history.

Nobody wants to take medicines unnecessarily but having a blood clot could have serious consequences for you and your child.

Okay. I guess I thought that If my HCT was 45 or lower, than the risk for a blood clot was decreased. I’ve still got so much to learn about this crazy stuff. Thanks

The numbers are guidelines and different haematologists are more/ less confident around the margins.

Your doctor may also be factoring in other factors such as smoking, weight, blood pressure, activity levels, etc which all contribute to the risk of blood clots.

The risk assessment process is more a picture than a formula - but you should be in the middle.

Okay. Makes sense. I’m not overweight and live on a farm so activity level is kind of high. Ha ha I believe I’ve had this for the last year because my platelets were always high and I’d ask my family doctor about it and they told me it was because I was a woman! :( So having it that long would probably put me in the middle like you said. Just gotta work the way back down and start somewhere. Thank you!

Just to clarify. I meant that you, as a whole person, should be at the centre of the risk assessment process, you are not just a set of test results to be plugged into an algorithm / equation.

I didn't mean that you should be in the middle ie somewhere between high and low risk.

It’s okay. I need to just stop fretting and pray and trust the doctor! My blood numbers are down further than what they were when I started so I’m okay with that. And I need to stay off of google! Lol

By definition a low risk patient is a future high risk one. Did you read this paper and the controversy about the wait and watch strategy ? Regarding the allele burden HU is of little benefit on the long term compared to interferon. onlinelibrary.wiley.com/doi...

Cllfairy07 profile image
Cllfairy07 in reply to Manouche

I’ve been reading about inferion and am going to ask my doctor! Thanks!

JT_Marlin profile image
JT_Marlin in reply to Manouche

Agreed with Manouche here - my understanding is that pegasys (interferon) should reduce both the platelet count as well as the jak2 allele burden. My doc was undecided on treating me with HU vs Pegasys noting that there is a study underway comparing the effectiveness of both vs each other. As for risk levels, I think if youve already had some level of MPN symptoms especially a stroke (or TIA) or MI then youre high risk regardless of your levels.

Cllfairy07 profile image
Cllfairy07 in reply to JT_Marlin

Thanks. I’ve never had any symptoms of Pv except the rash. I haven’t had a stroke or clots or anything so hopefully this will help with treatments and being younger too. Defiantly gonna ask about it for sure. What are you taking then?

JT_Marlin profile image
JT_Marlin in reply to Cllfairy07

Im 39, for the ET (possibly PV) I’m on a twice per day dose of aspirin and eliquis, and starting pegasys shortly after we determine if I’m going to have my PFO (hole in heart) closed. But Ive had both a TIA and MI.

Manouche profile image
Manouche in reply to JT_Marlin

A retrospective study has been published recently:

" “For years, there has been argument whether patients should be treated with phlebotomy only or, if cytoreduction therapy is needed, should it be [hydroxyurea] or interferon?” said Dr. Silver. “We believe the latter, as do many others, since interferon has biologic reasons for its use in polycythemia vera. It is not a nonspecific cell poison like [hydroxyurea].”

The retrospective study focused on 306 polycythemia vera patients whose median age was 54 years (range 20–91 years), and 49% of whom were women. Most patients (82%) were white, 42% were judged high-risk, 28% had cardiovascular risk factors, and 13% had a history of thrombosis."

practiceupdate.com/content/...

Meatloaf9 profile image
Meatloaf9 in reply to Manouche

Read this article a while back. Based on this study and some comments made after the 2019 ASH meeting I think that treating early with an interferon is probably the best option especially for a younger person. I am a 70 y.o. ET patient and plan to ask my specialist when I see him in May if it would be an option for me. I understand that there may be some trials of Ropeg interferon starting in the near future here in the US for ET and PV patients.

Best of luck to you on your journey.

Our numbers are almost the exact same. I’m 36 with two little kiddos and was just diagnosed with PV a day ago. My doctor told me that we will start me on hydroxyurea next week. I’m nervous about it also and have tons of questions like you, but I also don’t want to risk having a stroke or clot anywhere else that could cause permanent damage. There are so many possibilities that could or couldn’t happen and it’s so scary.

Cllfairy07 profile image
Cllfairy07 in reply to Hooty011

It’s good to know that I’m not alone with the age that I am and with a young family. I’ll ask more questions and then see what my doctor says. I’d like to try the inferion but understand that I don’t want the risk of what you said as well. Thanks!

JT_Marlin profile image
JT_Marlin in reply to Hooty011

I feel you hooty. Im 39 and have two kids as well. Scary stuff. A stroke is much scarier. Keep that blood thin!

Greetings from Fleetwood England.

Welcome to this club. The questions that you need to ask your team.

1. Overall outcome of hydroxy treatment in relation to your condition and age.

2. Benefits of one course action over other.

3. Explanation of management protocols to you.

Your blood disorder is unique to you.

My team said to me" let's work on reducing the overproduction at the cellular level and consider the long term prospects"

I am 66 female now three years with platelets at normal level. Treatment consists of aspirin, hydroxicarbinide Two per day with no side effects.

My regeime is like a fire wall protection and prevention.

Hope this helps.

Hi there. I’d really want to know WHY they were planning to start you on Hydroxy. Why Hydroxy (and not another drug) and why now (and not later)?

My guess is that your haem may feel the phlebotomies are not having the desired impact and are not really an effective intervention. I had them fairly regularly for quite a while but they weren’t having a sustained and significant impact on my HCT levels and my platelets continued to rise (double yours). To be honest the venesections were becoming harder as my veins got more scarred. Hydroxy had an immediate effect on both my HCT and platelet counts.

Some of the info you’ve been reading about Hydroxy appears out of date. There was a time - a long while back - when it was thought that Hydroxy increased your risk of other cancers, specifically leukaemia. It emerged the risk was related to the use of, and interaction with, another particular drug. That is no longer the protocol and the particular drug is no longer used. It is true that you have to be careful in the sun when you use Hydroxy, but that’s no bad thing. Other than that, remember that the doses that MPN patients take are relatively very small. This is not cancer treatment with a big C.

I wouldn’t get too hung up by low risk / high risk. Everyone is an individual especially MPN patients. And different haem teams have different approaches to treatments (within limits!) Some like to intervene early, some are more relaxed. Others are keen advocates of Interferon, some prefer Hydroxy as a first choice drug intervention. Budgets and drug accessibility will also impact. The important thing is that you ask lots of questions and feel satisfied that you have reached an informed decision about what is right for you. Wishing you all the best.

Aquinas profile image
Aquinas in reply to Ebot

What an excellent comment. Thank you for the information which you have provided.

Hello ... I understand your concerns about hydroxy ... I felt the same but I decided to try it ....also I’m like you in that I’m low risk ... I take 1 tablet Monday .. Wednesday and Friday .... I feel fine have been taking for a year now .... there is a risk of leukaemia and others but very low risk .... I would rather this than to take the risk of a stroke that could be devastating to brain and body .....also I know many others that have been taking hydroxy for 10 .. 15 years .. plus ...who are all fine .....whatever people with our conditions do there is a risk .... but with looking after ourselves and listening to our professionals we can all expect a life span as long as someone without MPN ..... hope this helps ... love and kisses to you ...

Lainie xx

Hi Cllfairy07

I was diagnosed with PV Jak2+ after I had a stroke, so was 'classed' as high risk, but, I still opted for venesection, every 6/8 weeks and aspirin to lower my HCT and keep my blood, clot free. It worked well for me for quite a few years. Until constant, repeated venesection destroyed my already poor veins and venesections became impossible.

In December 2019 'we' decided that Hydroxy was the only way forward. I was dreading it, as I hate taking medication of any kind, so the thought of taking a chemo-therapy drug was my worst nightmare.

But, it's been fine - as has been said previously it's a very small dose. The only 'side-effect' I have so far is fatigue. Although, I used to feel wiped out and fatigued after venesection as they caused low Iron and Ferratin levels.

I'm actually feeling so much better now, as I don't have to suffer the trauma of 6 weekly venesections - No more bruised painful arms is a definite bonus and for the first time in 5 years I am not having to visit the hospital every 6 weeks! (It had started to feel like my 2nd home) Now my appointments are every 3 months :)

Hydroxy hasn't lowered my HCT to <45 but it has stabilized it at .47 which for me is good.

I would definitely stay clear of Dr. Google and make sure you stay informed by asking and getting answers from your doctor.

All the best. Kari.

Hi. I don't have any words of wisdom but wanted to say hello and that i know how you feel. I'm 41 with a 6 year old son. I was diagnosed 3 years ago with PV and since treated with aspirin and venesections. My platelets have continued to rise though (973 last count and quite consistently in the 900's now) and my hct usually shoots back above .45 a few weeks after venesections.

I spoke to a consultant who said hydroxy would be the only next step but i too have a fear of it causing more issues than it solves. I wonder why they always head straight for hydroxy without consideration of other drugs first.

Anyway, i hope all goes well at your appointment. Let us know how you get on, and feel free to message me if you want to chat anytime 🙂 xx

Manouche profile image
Manouche in reply to Skyehope

« All untreated cancers progress from an early stage to the advanced metastatic stage due to increasing genomic instability, subclone formation, and ultimately metastasis. As cancers, the MPNs are no exception to this general rule on cancer biology. Accordingly, institution of IFN at the earliest time point possible in MPNs may offer the best chance of a successful outcome [22–25]. The “Early IFN Intervention Concept” is based upon Danish studies, which have demonstrated that long-term treatment with IFN may induce a state of MRD as defined by deep molecular remissions (< 1% mutated JAK2V617F alleles) in concert with a normalization of the bone marrow—even being sustained in a subset of patients after discontinuation of IFN for several years » ncbi.nlm.nih.gov/pmc/articl...

Kelly2 profile image
Kelly2 in reply to Skyehope

Hi. Blood cancer is not metastatic. If you have no other underlying problems I would wait some more with aspirin and venesections. If by any chance you progress to MF you can start interferon or other drug. Talk to your doctor if you can postpone it. I have. My view of course.

Cllfairy07 profile image
Cllfairy07 in reply to Skyehope

Hello! My doctor said since my WB counts and platelets weren’t improving much with the phlebotomies, he felt it was time to start the hydroxy.

I’ve been on it for almost 3 weeks and my counts are coming down fast so I’m hoping that maybe I could go on one dose a week or 2 or even a month. Platelets went from 800+to 650 and my WB went from 13.5 to 12.4 and HCt was 42.2! I’m happy about that so hoping in a week and half when I get my counts again, that they will be normal and I can back off on taking it once a day!

I’ll be honest, I’ve battled with some side effects. Right now, I’ve had chills since I started it and I had gotten a rash and mouth sores but the sores have gone away and the rash just feels like the PV rash. The chills and low grade fever feeling is for the birds but I hope it’ll go away in time.

Id trust your doctor and see what they say. Everyone is different with side effects but to bring counts down as fast as it did, is great. The other drugs I’ve heard about, my doctor told me the inferion is painful and the J name one is for end stage and he said I’m not there yet! Lol

Just trust your doctor and relax. Let them worry about your counts. I believe the hydroxy would defiantly help especially with your counts being in the 900’s. You don’t want to have any health issues that go along with the disease to effect not being there for your little 6 year old. ❤️

Trust the doctor and trust God and things will be as they should be. And pray before you start any treatments if you have any reservations.

Skyehope profile image
Skyehope in reply to Cllfairy07

Wonderful that your counts are down already! Sorry you're having a few side effects but hopefully they will dissipate, especially if you can reduce your dose.

I have faith which is definitely a blessing on not feeling too alone with this. I had another appt since posting last and they're holding off for now on further treatment so I've a wee breather for now.

Good luck with your journey and stay safe in these crazy times! xx

You already have some excellent feedback about the potential need for cytoreduction. It is very important that you understand what the risk factors actually are in order to make a good decision for yourself. Leukocytosis (too many while blood cells) and erythrocytosis (too many red blood cells) on top of thrombocytosis (too many platelets) does increase your risk factors. Please have your doctor review all this with you as well as what the target levels for HCT, WBC, and platelets are for you (and why).

You are rather young to be starting on hydroxyurea, There are other options such as PEGylated interferon or ruxolitinib that may have a more desirable risk/benefit profile. Many docs prefer these meds for someone your age. Some docs prefer these meds for all patients. Due to your age, there are some specific precautions you would have to be aware of if you do take hydroxyurea. Do also be aware that all of the medications used to treat PV have their own risk/benefit profile. There is also risk in inadequately treating the PV.

Please do be sure to gather all of the information you need to make a good decision. Your doctor can advise you about your care, but only you can make the decisions. you decisions will only be as good as your understanding of what you are deciding.

All the best.

Good Luck I thought Hydroxy was Plaquinil! As long as there’s no bad side effects, I’d try it! Especially since U have JAK2 gene! I wish my doctor had put me on more than just one whole aspirin! I was under his care for 13 years and afryloosing my leg, he found out I had another rare blood disease! In fortunately for me he new my history of several blood clots from age 24 on! You r young and seem to have hi platelets! Can’t they put u on Plavix or one of other hi Platelets medicine! I pray for you to make best decision! Your very smart researching your issues! Godspeed

Hi Cllfairy07. If you are low risk with those numbers including your age you can wait on the HU. I started last July but I had platelets of 2200! I am 55.

I would suggest you not to start it. You are very young and since you are low risk don't. Your counts are not so terrible, I am much older than you and only on aspirin and two phlebotomies.

Before I was diagnosed with PV and put on Hydroxy in 2015 at the age of 53, I had already suffered 3 DVTs which could have been very nasty. I wouldn’t hesitate have Hydroxy. It would be so much better than having a heart attack or stroke. It has been a wonder drug for me and I expect, and hope, that I will live a long and happy lifetime.

Take care

Jill

X

I get the impression that you doctor thinks that eventually you will need medication to manage you platelet counts and since you're platelet counts are already outside of the normal range, you may benefit if you start with the medication now versus waiting until you absolutely need to. If you decide not to now and your platelet counts continue to climb, you will probably have no choice but to go on the medicine. Get clarity from the doctor on the side effects of the medicine and other concerns you may have, so that you can be comfortable with your decisions.

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