Starting hydroxyurea and scared: Hi everyone, My... - MPN Voice

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Starting hydroxyurea and scared

Olmstmg
Olmstmg

Hi everyone,

My platelets have risen from 530 to 728 in the last 12 months and heme called and told me I should be on 500mg Hydroxurea twice per day and start a blood thinner, such as coumadin, right away. I have only been taking low dose aspirin till now and am 67 with really no symptoms. I told him I needed to discuss before taking this big step and will meet with him tomorrow. Yes, I am devastated by this, scared and wondering what this chemo pill will do to me. I have suggested we try ropeginterferon (sp) and he tells me side effects are worse and can cause severe depression. Can anyone offer advice from experience with hydroxy and coumindin use? Is ropeginterferon a better alternative?

Thanks for helping...this site is a godsend.

32 Replies

I cannot talk from experience about the advantages and disadvantages of the different drugs but now at almost 79 I do have 10 years experience of Hydroxy (+ aspirin).

Please do not assume you will automatically have side effects from the HU. For the first few weeks I had some blistering on my lips and in my mouth but that disappeared. Now, I have only fatigue which it seems may be due to my MPN (ET) and/or HU - its degree varies from time to time. I still have a tendency to a sore mouth but that is easily dealt with.

I sometimes contrast my feelings about HU now with how I felt the very first time I put the tablet in my mouth. I felt I was poisoning myself. Now, I think, 'Thank God for HU. Better that than a stroke!'

Whatever medication you finish up with, good luck and I hope you do as well on yours as I feel I have on mine. Sallie

Olmstmg
Olmstmg in reply to Mwalimu

Thank you so much Sallie, this very helpful. I know my doc is concerned about blood clotting and trying to protect me.

There is a lot I could say but I will leave it at this. I think you need to consult with an mpn specialist before you start on hydroxyurea and coumadin.

I am 69 and was diagnosed last autumn with ET with CALR. I take 1500 mg of hydroxyurea a day and Found side effects to be minimal. I had more side effects during the first few weeks, but now I have some drowsiness and mild headaches. I don't take a blood thinner but do take low dose aspirin. It seems like a little much to me, I would be concerned too. My platelets were up to 1.1 million, but now are down to 260,000. I just checked with my hematologist and he agreed to eliminate 4 capsules a week. You are right to discuss this further.

Olmstmg
Olmstmg in reply to Whitehair51

Thanks for your experience! I neglected to mention my BMB was inconclusive but likely ET.

Hi, I always try and look on the bright side. I was diagnosed in October 2015 ( age60) put straight onto hydroxi my meds continued to rise very slowly for 41/2 years in order to balance out my platelet rise . I used to cry every time it happened. It’s awful but I assure you after suffering a stroke aged 50 ( unrelated to ET) the BENEFITS OUTWAY THE RISKS. You might even feel better. Regarding Coumindin I haven’t heard of that I’m on an aspirin substitute. Good luck.

Olmstmg
Olmstmg in reply to Wyebird

Thank you Wyebird

My husband had no side effects at all from hydroxy the thought of taking chemo medication scared him. He was on it two years .He's now on ruxolitanib and again no side effects at all.

He feels so much better and has no symptoms of post PV MF x

Olmstmg
Olmstmg in reply to tracey13

Glad to hear your husband tolerated meds so well, hope I am as fortunate...Best

Hi. I started Hydroxyurea when my platelets were 750 "sleeping " for a very long time. Every doctor i went suggested it. I took the tablets for four months and had to stop it due to terrible fatigue, sore mouth and affected immune system. (I had 3 consequent colds that targeted my lungs and lasted 20 days each and had to take many antibiotics to get well. As soon as I stopped it, my fatigue disappeared and i was feeling fine taking only aspirin. The point is that my platelets started to go slowly upwords and now i have reached a million. Still on aspirin. I regret taking it in the first place because as my doctor had told me they were "sleeping" but he still suggested it. Now i think that i triggered them with Hydro. I really don't know what i will do next as me and medicines dont get along well ,😢

Olmstmg
Olmstmg in reply to Kelly2

So sorry to hear this, sounds like results vary quite a bit. I understand many new treatments are on the way. I hope you are seeing a doc with MPN specialty and up on latest meds.

Hi - My platelets are over 700 & I started on Hydroxy a week ago - just 500mg for now. No side effects so far aspirin 75mg. I am also scared of this condition but re-assured by everyone so far. Lots of luck...

Olmstmg
Olmstmg in reply to Annula

Thank you for relating your experience....encouraging, however I am hoping my doc will prescribe something that is non- chemo, just the same. Seeing him today

What is Coumadin?

Olmstmg
Olmstmg in reply to 130396

I believe it is a blood thinner, Doc is telling me I will be on this the rest of my life

Annula
Annula in reply to Olmstmg

That's pretty good! no other treatment then?

hunter5582
hunter5582 in reply to Olmstmg

Correct about it being a blood thinner. Not sure why the doc would recommend it over the standard low dose aspirin unless you have had issues with thrombosis of have a high-risk cardiovascular condition. That would be another thing to review with the doc to understand the reasoning.

I am taking Hydroxy 9 a week I also take a mini aspirin every day I have been on them since June 2019 and I am fine hope this helps my platelets are down to 340 x

Olmstmg
Olmstmg in reply to Tilly_Rose

It does help! Thanks for taking the time.

Annula
Annula in reply to Tilly_Rose

Glad your platelets are within the normal range -very encouraging..!

I take HU and aspirin 81mg and am slowly bringing platelet levels down. No side affects except very minimal hair loss at first. I’m not as tired as I was when my counts were higher.

Olmstmg
Olmstmg in reply to Jpop

Thank you!

Based on what I have read here and elsewhere coumadin and hydroxy are not usually a first line approach, coumadin and baby aspirin are far more likely to be prescribed.

On the other hand, if you are in a high risk situation without the added factor of an MPN, coumadin and hydroxy may be the best combination for you. I would ask the doctor why he is including coumadin as well. It could be that there are underlying conditions ie: high cholesterol or the blood tests show that you have platelets that are misshapen and more likely to clot or something along those lines.

I started on 500 mg hydroxy 3 weeks ago and have only felt improvement across the board, but tolerance to it seems to vary wildly and it seems the only way to find out if you can tolerate it is to take it.

Annula
Annula in reply to nightshadow

You sound very knowledgeable about the meds & condition.. I am still learning & sometimes don't want to probe further. Tel. conversation with my Haematologist next Friday for an update...

nightshadow
nightshadow in reply to Annula

Thank you, but mostly my advice is based on basic research, basic biology, paying attention to what people are writing, and knowing that while we may all be in the same boat, we all have idiosyncracies that may mean treatments will vary.

I did 99% of my probing on line, allowing me to prep for questions that are to the point for the doctor. And the more I found out the more relaxed I feel about the whole situation.

I was really nervous about taking the hydroxy, and this site was a god send. Reading the number of people who have been on it for years was truly a relief and made me much more secure about taking it.

Olmstmg
Olmstmg in reply to nightshadow

Thank you, just took first pill, will find out soon

I definitely think that getting a second opinion is always a good idea. I was diagnosed with the ET at age 60 and I am now 69. I did not want to start medication and as long as my platelets stayed under 1 million my oncologist was comfortable with that since I did not have any symptoms. At my request once my platelets hit 1 million we tried 500 mg of hydroxyurea every other day. That made me tired and so we went to every third day and even though my platelets are not decreasing rapidly I am still asymptomatic and I am quite happy to have almost full energy. My platelet count continues to gradually decrease.I wish you the very best. Plenty of people have no bad reaction to the hydroxyurea. I now feel very good about it when I take it. I also take daily low-dose aspirin.

Olmstmg
Olmstmg in reply to Octopedes

Thank you for taking the time to reply. I had my doc visit today and agreed to start hydroxy with 50mg twice daily. He also agreed to bring on a MPN specialist to determine if other options, such as pegylated, ropeg, etc would be a better course. I have a few markers that suggest I may have MF rather than ET which is quite discouraging, however I am putting together a good team and hopefully improve outcome.

You will hear the whole range of responses re. HU based on the experiences we have each had. Some like myself cannot tolerate it and experienced toxicity even at very low doses. Others tolerate it for years with little in the way of adverse effects. ALL of the meds used to treat MPNs have their own risk/benefit profile. Ultimately it is up to you to decide which treatment option you wish to use. This should be based on a review of the risk and benefits of each option and your preferences and priorities about which risks you would prefer to assume. Ropegylated interferon is supposed to be the easiest of the interferons to tolerate. Considerably superior according to the current literature.

Comparing HU to ropegylated interferon is a bit of comparing apples to oranges. They work in fundamentally different ways. The interferons are more specific in what they do and target abnormal cells more so than HU. HU is a broader spectrum cytostatic medication that affects more types of cells (e.g. endothelial cells). They both work to reduce hematopoiesis, just in different ways. Unfortunately, ropegylated interferon is not approved by the FDA in the USA yet. Hopefully it will be soon. It is what I plan to use when I need to resume medication to treat my PV. I find the hope of preventing disease progression and possibly attaining hematologic and molecular remission to be very promising. Even when tolerated, HU cannot halt disease progression and will not attain molecular remission for anyone (but is can reduce some symptoms).

Please be sure to review and consider the entire range of responses. This is not a black and white decisions. Also remember that doctors make recommendations. Patients make decisions. Doctors write orders, but they do not give them. The decision is yours to make. Edicated and assertive patients receive higher quality care. Passive patients do not. One thing that is worth doing is to get a second opinion form a MPN Specialist. Most hematologists have very little experience with MPNs due to their rarity. Here is a list of MPN expert docs mpnforum.com/list-hem./

About MPNs / ET

legeforeningen.no/contentas...

youtube.com/watch?v=hbVr9u3...

mpninfo.org/conferences/201...

About hydroxyurea

drugs.com/monograph/hydroxy...

ncbi.nlm.nih.gov/books/NBK5....

Hope this all helps.

Olmstmg
Olmstmg in reply to hunter5582

Hunter,

Of course this helps and you have helped me when I was first diagnosed with ET. Now my doc believes I am PMF so now I am really frightened out of my wits and thinking this is the end. Doc has put me on HU but I will be consulting with a specialist (with his approval). I have read about promising new therapy's and hoping they can slow progression. Anyway,

you are truly a blessing and best of luck in your journey

Given what you are describing I would most certainly push for ropegylated interferon. you will hear from others about the range of tolerance like any other medication used to treat MPNs. I do agree it is one of the most promising options we currently have. There are also some promising combination therapies in the research.

I hope you will be able to consult with a MPN Specialist ASAP. It is certainly the best way to ensure optimal treatment. I have two hematologists on my care team. One is a terrific local hematologist who is not a MPN expert (by his own definition). He handles my on-going care. I also see a MPN Specialist at Johns Hopkins MPN Clinic. He consults with me and my local hematologist about my care plan. This arrangement works great.

All the best to you on this next stage of your journey,

Olmstmg
Olmstmg in reply to hunter5582

Thanks again Hunter. I am headed to same type of care team and will get a specialist on board in late Feb/early March after a quick vacation.

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