Hydroxyurea concerns

[Orangemusic]

Hello, I am triple negative. My doc advised me to take asprin initially. Now with the latest report my platelets have almost touched 1 M. He has advised to start on hydroxyurea. I am really worried. Feeling little depressed too. Is life normal with these medicines or health deteriorates with these medication. I have lot of family responsibility. Will I be able to lead a normal life? Need the support of you guys to keep me motivated.

[Osteomyelio]

Totally understand your concerns. It seems experiences vary greatly among us. In my case, I am prescribed Anagrelide for platelet control because I was intolerant to hydroxyurea.

[Orangemusic in reply to Osteomyelio]

Thank you so much for your reply

[WileyFrench]

I, too, totally understand your concerns - when I started taking HU in July 2018 I was extremely worried and anxious. People on this forum were great - very practical and helpful, with a great many having been taking HU for years and doing just fine. Like you, I have ET triple-negative. After 18 months on HU, other than getting the dosage adjusted a couple of times to move platelets into the normal range, I can say that my life is exactly the same as before. I was very physically active (running, hiking, racquet sports) and that’s still the case. About the only things that are different is that I drink loads of water per day (we are supposed to) and am way more cognizant of using sunscreen and covering up in the sun (HU can make us more susceptible to skin cancers apparently). It’s easy to say “try not to worry”, but the worry does lessen with time for sure. And Maz, the admin of this site, has asked medical experts about triple negative ET and they’ve advised it is the most benign of the MPNs. You’ll no doubt hear from many others here who, like me, are living a very normal life - just one with meds.

[Orangemusic in reply to WileyFrench]

Thank you so much for your encouraging words. I am little relieved after reading your reply.

[Aneliv9 in reply to WileyFrench]

It seems that i have ET with no mutation yet and borderline high platelets. What are your platelets counts?

[WileyFrench in reply to Aneliv9]

My platelets are now under 400.

[dgk70]

Hi orange music

I’ve been on aspirin and hydroxy for about 3 years, I only have fatigue as a side effect but that could be the condition or the meds I have ET, unfortunately my platelets are still hovering around 800 , so I’m due to have another bone marrow biopsy 😩

. I hope this helps

Good luck 👍

[Orangemusic in reply to dgk70]

Thanks for your reply. Best wishes

[Kelly2 in reply to dgk70]

Why should you have another bone biopsy? To find out what exactly? Is your spleen enlarged? That is what you should check.

[dgk70 in reply to Kelly2]

Hi kelly

There going to give me another bone marrow biopsy to check to see if the condition has changed from ET to leukaemia .

[Kelly2 in reply to dgk70]

Ok. Do that. They know better. I wish you good results!

[Ramy22]

Hello, I have been taking 1g hydroxyurea for decades and am, and always have been, fabulous, my health that is!😀 I was terrified when I was advised to take it. I was young, had many responsibilities, a great life..... Life remained as it was and it may not have been had I had a stroke, which is what the doctors said could happen. I have ET and know I am not JAK2 or the other one. I must find out which ET I have .... when I was diagnosed you had the choice of having ET or not having it. Good luck.... I’m sure you’ll be fine! Let us know how you get on.

[Joerp]

Hey

I’m on Hydroxy and have been for around a year. I’m relatively young (40). Jak2 positive with PV. My platelets started around 1.7 million.

Was not keen on Hydroxy either so started on Pegasus but it had no effect whatsoever on platelets. Stared Hydroxy and have gradually increased dosage to 16 a week. Platelets are down to 400 or so and it hasn’t made any really difference to my busy life (2 young kids, lots of travel for work and trying to keep active).

As mentioned try and drink a lot, although I am awful at this. And take care in sun (easy in uk). Hopefully you’ll just get on with it.

I’m always on the look out for another med as I still feel weird saying I’m on Cheamo but for now it’s fine. Hope you find it so as well. Good luck.

[Orangemusic in reply to Joerp]

Thanks for your reply. We are more or less the same. I am 47 and have 2 children to take care of. The fact that i will be in chemo for the rest of my life makes me feel little bad. But with the support of this group I am feeling little confident.i am also trying to find any alternative medicine herbal or homeopathy before starting with hydroxyurea.

[SueYoung]

I'm in a similar position to you diagnosed triple negative ET in 2015 and on aspirin only. At my last haematology appointment my doctor advised that I will likely need to go on HU in May when I hit 60. At the moment I am apprehensive but when reading other people's posts. Some feel rotten for a few months then get used to the meds and feel fine. Some people seem to go on the meds and feel fine from the start. Others react badly and need to try different combinations of meds until they get it right. No one knows how we each will react as we are all different. The main thing I take from this is that even if we do have a bit of a tough time going on the meds most people seem to settle down to a new normal afterwards. The main benefit will be that platelets reduce. Hopefully we will then stop worrying about the complications of the disease like heart or stroke problems. Think positively 🙂🙂🙂when the platelets go down so will the risk of complications. You could be one of the ones who go on the meds and feel fine. I'm sending positive vibes and wishing good luck with the next stage of your journey you can do this, stay strong.

❤️❤️

Sue

xx

[hunter5582]

Reactions to HU vary quite widely. Some tolerate it well - other not so well. There is really no way to predict. Per the NIH - HU is a highly toxic medication with a low therapeutic index. Some signs of toxicity (adverse effects) are common at doses that are therapeutic. What you have to do is to understand what is happening, how this medication works, what its intended benefits are and then determine whether the way your body reacts to the medication is worth the benefits.

HU is a cytostatic medication. It interferes with DNA activity throughout the body, including hemopoietic stem cells, the precursors to all blood cell lines. By interfering with hematopoiesis, HU reduces the number of platelets, along with both erythrocytes (red blood cells) and leukocytes (white blood cells). HU does not just slow down DNA activity, it can also break allele strands and interfere with the cells' DNA self-repair function. Thus it is a teratogen (birth defects), a mutagen and a carcinogen. Some of the more common adverse effects are broadly termed mucositis disturbances in the body's membranes such as mouth ulcers. There are other adverse effects which are easily found in any patient education monograph.

Taking HU does require that you take a few precautions. Like any chemotherapy, it is very important to stay well hydrated. Women of child-bearing years not on HU are advised to wear gloves when handling the bottle to avoid exposure. Couples who are sexually active are advised to use condoms to protect the partner as HU passes into both semen and vaginal secretions. Couples who want to have children are advised to wait after discontinuing HU 6 months for women and 1 year for men.

Having said all that, it is important to keep it all in perspective. All of the chemotherapies have their own risk-benefit profile. Doing nothing to treat your MPN could also have significant associated risks. If you have had any of the ET associated bleeding/clotting incidents, splenomegaly, etc. with levels at 1 million, the cytoreduction would certainly make sense and likely be worth the associated risks.

It sounds like you are ET triple negative with platelet levels at 1 million. Since your doc does not have you on aspirin, I am thinking you may be one of us who reacts to the thrombocytosis with increased risk for hemorrhage rather than thrombosis. Have you been checked for Acquired von Willebrand Disease?

There is lots to consider in figuring this all out. hope you get your answers soon.

[hunter5582 in reply to hunter5582]

Just reread and realize you are on aspirin after all. How have you responded to the aspirin? Please do be aware that for some of us (me included) it is actually the risk of hemorrhage that increases when our platelet level increase. Acquired von Willebrand Disease or more moderate changes in how platelets aggregate can occur at levels below 1 million, so it is something to be aware of.

[Jocro]

Hi Orangemusic, Yes, I remember how terrorized I was when Hydroxurea was prescribed for me. But, that was 33 years ago. I still take 9 capsules a week and a low dose aspirin per day. Yes you can lead a normal life on this drug. Do whatever you want. Family care, work, sports, volunteer.

Some people may not tolerate this drug as well as I do but I think you should give it a whirl and see how it goes. My very best wishes for you. Oh, I am now 82 years old and still going strong. Contributed a homemade pie and cranberry sauce to our Thanksgiving celebration.

[mhos61 in reply to Jocro]

How inspirational for us all.

[Orangemusic]

Oh that's great.Thanks for your reply

[Mazcd Partner MPNVoice in reply to Orangemusic]

HI Orangemusic, I hope that the replies you have received so far have helped you, we all understand how scary it is when you are told you have to start taking Hydroxycarbamide, I thought that was the end for me, but I must say they have made such a difference to my symptom burden and increased my quality of life greatly, I am really ok about taking them, been on them for over 12 years now. I hope that you don't experience any side effects, but if you do, I hope that they aren't too bad, and if you do experience any, give them a couple of weeks and hopefully it will settle down, if not, go back to your consultant. But give them a go and see how you get on, I thought I would be glowing in the dark, but nothing happened, I just started to feel better. So, good luck and let us know how you are getting on. Best wishes. Maz

[Orangemusic in reply to Mazcd]

Thanks for your reply

[mhos61]

All I can tell you is hydrea has worked well for me. I have ET (Jak2+) and I remain stable on a low dose.

The first month I had the odd mouth ulcer. But that’s about it. I have no issues whatsoever now. The worst thing is taking that first tablet.

In all honesty, I am grateful for the protective factor hydrea offers me against potential thrombotic events. That’s why I keep taking the tablets!

Mary x

[Cambrook]

My life wasn’t changed much from HU I guess. Sure I have less energy but I guess that’s normal. Just stay positive and let that energy lead you throughout your days!

[EleanorPV]

Lots of people live a ‘normal’ life and have no symptoms. Others struggle with symptoms like fatigue (usually before they start any medication). Good luck and enjoy life. ❤️💜