Oh dear

[Mostew]

Update on me taking HU

perhaps I shouldn’t be on here for a while . Just read ‘will I get used to it’. And comments

And am even more hesitant to start ....

the meds are sitting unopened while I continue to ‘think’

[hunter5582]

Hesitancy is natural. You have been struggling with this for a while. Perhaps circle back to the core questions.

1. Do you need cytoreduction at all? Do the benefits of cytoreduction outweigh the risks?

2. If you do need cytoreduction, which medication is the best choice for you considering the risk/benefit profile for each choice.

2.1 - Hydroxyurea

2.2 - PEGylated Interferon

2.3 - Jakafi (2nd tier)

2.4 - Anagrelide (2nd tier)

The answers are not black and white. There is judgement involved. Your judgement. You can make the decision taking into account your treatment goals, preferences, and risk tolerance.

Regarding HU, know that if you do experience adverse effects, most will usually resolve if you discontinue the HU. You can always give it a try and see how you react. If you would rather pursue another medication (assuming you do need cytoreduction) then it is time to let your care team know that is your choice. Just make this decision based on facts, not fear.

You have likely seen me quote this before, but it always is relevant fo all of us in managing MPNs.

"I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past, I will turn the inner eye to see its path. Where the fear has gone, there will be nothing. Only I will remain." Frank Herbert, Dune

[Otterfield]

The short answer: just start! If it's not right for you, you will have the option to stop and try something else. Good luck - you can do this!

[mhos61 in reply to Otterfield]

I appreciate the difficulty you’re having, it’s really not an easy thing to take that first tablet. Taking this drug is all about lowering your thrombotic risk, so that’s what you have to weigh up and consider.

This is just my opinion, try not to overthink it, give it a go. Take it after your evening meal with a large glass of water, if there are any side effects hopefully you’ll be asleep.

I’ve been on hydrea for over four years. It really works well for me, as it does for many. I have had no side effects to date.

As Otterfield has noted, if it doesn’t work out you can stop it and discuss alternatives. You’re in charge.

Mary xx

[Mostew in reply to mhos61]

Thank you for your good advice .

My head knows it’s sensible to lesson the risk of a stroke.

Trouble is I’ve lived my life not thinking to much a head . If I stayed as I am now I would be fine .

Need just a bit more time .

As Hunter says it’s important to feel positive . ......

I will stay on MPN voice . It’s like a virtual hand being held !!!!

Xx

[Mostew in reply to Otterfield]

I know that’s right . Your support is appreciated very much

[katiewalsh]

Most of us were afraid to start on Hydroxyurea. I waited 10 months then was educated that it could save my life. Having almost died from blood clots I decided I’d be a fool not to begin treatment. And for me, like many, the drug is well tolerated. The only side effect I’ve had was small mouth sores before I learned the proper way to take it. And the mouth sores disappeared within 1 day using a rinse of baking soda, salt & water. You can always get off it if you have problems. Katie

[GK40 in reply to katiewalsh]

I didnt know there was a proper way to take it? Can I ask what that is please? X

[katiewalsh in reply to GK40]

Sure, I drink something immediately before pooping the pill into my mouth & then quickly take another sip of liquid to swallow the pill. The goal is not to have it sitting on your mouth tissue any longer than necessary.

[JediReject in reply to katiewalsh]

That's a novel way to take them Katie. . , 'pooping them in' 😃

[Mostew in reply to JediReject]

I didn’t notice that mistake !!!

[GK40 in reply to katiewalsh]

Fab thank you!! X

[Mostew in reply to katiewalsh]

Yes . That’s what I don’t want to wait for ..

I suppose best to take before crisis point ...

isn’t it odd how we tend to listen more to the negative stories rather than be reassured by positive!!!!

So glad you are ok on it . Good advice about lots of water . Thank you

I must remember I can always stop ....

[redumbrella]

Hated the idea of Hydrea!!! eighteen months ago or so following an increase in symptoms particularly bone pain and fatigue along with the fact that I was almost 65 my Haemo suggested that I start on Hydrea. She prescribed 500 mg every other day as a starting point. At this point in time I was very frustrated at the fact that due to extreme fatigue and bone pain my love of walking was severely curtailed, in fact for me to walk more than a mile or so at a time had become a real problem for some years.

I was also undergoing venesection at least twice a year at this time.

I had heard of all the horror stories about the taking of Hydrea not to mention the psychological idea of taking a Chemo drug.

Reluctantly I decided to try the drug and see how it went. I started on Hydrea 12 months ago last September. Happily for me I had no Ill effects whatsoever but the symptoms did not decrease as much as I would have liked. In July last my Haemo following the need for yet another venesection increased the dose slightly to 500 mg 5 days a week resting at weekends. Following this increase I began to feel a lot better, both the fatigue and the bone pain at last had begun to abate a great deal. Which brings me to the here and now, in January last I decided to give the the walking a go once more. I started off slowly and built up my daily steps gradually until I am now walking about 5 miles 5 days a week. I am also on 500 mg daily since March following a further spike in my bloods. I still am suffering no I'll effects from Hydrea, I keep covered up to avoid the risk of skin cancer. This means no more shorts or T shirts and never going outdoors without a hat.

For me Hydrea has been a wonder drug, it has taken a while but it has definitely increased my quality of life albeit I still suffer some fatigue and bone pain.

Give it a go! you can always stop if it doesn't suit you and as other MPN'rs have said there are alternatives.

Sorry if my reply appears somewhat long winded but I hope that it will be of some help to you.

Kind regards and keep well

Garry

[Mostew in reply to redumbrella]

I have bought myself a nice sun hat and will get sun cream . Getting there slowly

Not long winded at all . Very helpful,

only alternative for me seems to be anagrelide . Which doesn’t sound as effective .

Good to hear HU suits you .

Did you have bone pain before taking it ?

Warm wishes to you

Carolyn

[MPNBlog]

Hi Mostew. You have some very sound advice from others on here. It depends if you are a 'facts' person or a 'feelings' person. If you have decided it's the best medicine to try for now, the best advice I had at the time was that it's not an irreversible decision and you can always change your mind and stop it. That took a weight off me. It's unlikely initial dosing will have any immediate effect on you anyway. I was expecting some sort of reaction because I'm sensitive to medications, but nothing happened - it was a bit of an anti-climax.

If you're unsure it's the best medicine for now, you need to sort that out. Ask lots of questions and insist you get answers, check the MPN Voice information on the website, and most importantly, as someone else said, balance up the risk. What is tour risk level? Do you understand your risk level? Because that's the point of the medication while we still don't have a cure. That's what made me decide to go ahead - did I want to risk a stroke (I was told I was in the high risk category even though I felt fine) or accept the risks of the medication. But it's still not easy, and we sympathise with your feelings. Good luck and best wishes.

[Mostew in reply to MPNBlog]

Thanks for your comforting words .

I’m a facts and feeling sort. With a tip towards feelings !!!!

Anticlimax in a good way surely!!!!!

I think I’ve done to much research and spoken enough.

Action speaks louder than words at this point

As you say it’s hard when you feel ok .

BUT risk is not worth it .

Warm wishes to you

[Mostew]

Great quote Hunter. Always good to read

Jakafi. Wouldn’t be suitable for me as I have Hashimoto .. or PEG Interferon unfortunately.

So not much choice

I have noticed my hands are more purple , nails partly discoloured , sort of browny red towards top and my head sensation is more consistent.

Take these to be signs of decline . Despite good energy .

As everyone says it’s not sensible to wait for a major event . Also can have low dose .

Another week to get negativity out of my head

AND to memorise Dune !!

Warm wishes to you Hunter

Carolyn

[Cja1956]

We all understand your hesitation. I’ve been on Hydrea on an off since 2008 for ET. I was only 52 at the time and didn’t question him. Within months, my platelets went from 600 into the 300’s. On my own, I stopped taking the medication, and ended up in the hospital for 3 days with a blood clot in my spleen. It was awful. My platelets were never normal again. A few years ago, I developed MF. I’m still on Hydrea. Recently, I’ve been feeling overwhelming fatigue and forgot a couple of doses. When I had my check-up on Friday, my platelets had gone up to 897 from 632 6 weeks ago.

I guess my point is that HU works. I always felt that my original hematologist started me too early on it, but that’s in the past now. You’re not going to know how it affects you until you start it. And there are other alternatives, if it doesn’t work. Good luck to you. Let us know how it works.

Best wishes,

Cindy

[Solyesh]

Mostew - good luck with your choice. I think you have gotten good advice here and if you need cytoreduction then please do start.

I was hesitant as well, but am under the care of a great MFN specialist - started two weeks ago with HU at 1000mg daily (2x 500mg) - just had my blood test and follow up with the hemotologist - good initial results with platelets down from 1,400 to 789; no more bleeding of the gums when brushing teeth; kidney markers all back in normal range; all other RBC normal (WBC still too high) - I have been fortunate that except for one day of initial queasiness -have reacted well to HU. Will continue on this dosage for another two weeks; have another blood draw and we'll see if we can adjust downwards.

I was not looking forward to starting either and especially with HU - but my MFN spent a lot of time with me on pros and cons and between that and the good advice on this site took the plunge and glad I did.

[Mostew in reply to Solyesh]

So glad your platelets are coming down and mild side effects.long may it continue .

That’s encouraging . I will start on500 every other day . Platelets 900 at moment . All my other bloods are good so hope it doesn’t mess them up!!!

Take care

Catolyn

[Andyls]

Hi, I don't have much to add to what others have said. Ultimately, you have to do what feels right for you. In my case, I was extremely resistant to starting HU, because I didn't like the concept of chemo. I was lucky to have a wonderful doctor who eased me into it. He started with "I think it may be time to start thinking about hydroxy" and gave me a couple of appointments to think about it, always raising the stakes just a little bit. Please don't try to calibrate the medication yourself. Take the dosage prescribed (probably 1 per day to start) and then be sure to have follow up blood work in 2 to 4 weeks. Then, your doctor should monitor your response. In my case, after around 6 months, we lowered the dose to 4 per week (500 mg capsules) because I was extremely responsive. Not only were my platelets at the low end of normal, but my red and white counts were dipping below normal, as well. This dose has kept all my blood work normal for about three years. I am tested every 4 to 6 months and my counts are steady. Also, since you have such anxiety, if you decide to start taking the HU, try not to confuse your anxiety with true side effects. In my case, I though I was experiencing nausea, so tried nibbling on a digestive biscuit when I took the capsule. The nausea seemed to go away, and then after about 2 weeks, I eliminated the biscuit, and guess what? no more nausea. I have had no other side effects. I do try to stay well hydrated and am fanatical about sun screen. Good luck, whatever you decide. Keep us posted.

[Mostew in reply to Andyls]

Thank you for your encouragement. I really appreciate it .

I guess it’s hard to get my head round not finding any way to lower platelets without resorting to drugs .

But I will keep taking the natural remedies that are allowed in the hope they will help overall

Hope I’m like you re. Lack of side effects .

Warm wishes to you

[JaK2ET]

As you have had so much good advice already, I will only add:

1) The only way to know if Hydroxycarbamide/Hydroxyurea is suitable for you is to try it.

2) If you do try it and find it unsuitable for whatever reason, you could stop taking it after a short while and probably little harm would have been done.

3) Bear in mind that it can take a while for the cytoreduction to work fully. In my case I had been on HC/HU for about a year (dose 7 rising to 8 then 9 capsules a week, each of 500mg) before the platelet count came into the normal range. Corresponding to this platelet reduction there seems to have been an improvement in my physical and mental health (though other factors in my life situation may also be involved).

4) To be fair I must include one negative point. I now have an ulcer-like wound (outer lower left leg) which is not healing, unlike two apparently similar (to begin with) wounds that did heal (albeit very slowly) when I was not on the cytoreductive chemotherapy. At present I am awaiting the results of a recent biopsy of this wound, which may help to determine whether it could have been caused or exacerbated by the HC/HU ...

Good luck whatever you decide to do!

[Mostew]

Thank you for your support and. thoughts .

Glad you told me about negative as well as all positives !

As you and everyone say best try ...

Warm wishes to you

[Otterfield]

What strikes me is that many people are so hesitant and worried about taking Hydroxycarbamide. When I was prescribed it back in 2003, MPNs had not yet been reclassified as cancers - they were known as Myeloproliferative Disorders. Hydroxycarbamide was the main drug available but initially I was on a trial comparing its effectiveness to Anagrelide. I was on Anagrelide for two years, then the trial was stopped as Anagrelide was found to be less effective at preventing thrombotic events. I was switched to Hydroxycarbamide, then later to a combination of the two. The point is that in those days it didn't feel like a big deal. I knew the potential side effects, was careful not to get sunburned and talked to my haematologist if I experienced anything which might be a side effect. I was lucky in that I only had mouth ulcers at relatively high doses; reducing it and reintroducing Anagrelide sorted them out.I believe it is just one line of treatment and the word "chemotherapy" shouldn't scare us, as no drug is without some ill effects. For example, I am now on Ruxolitinib, which is far more immunosuppressive than Hydroxycarbamide; Pegasys gave me aching joints; Anagrelide causes headaches and palpitations.

Give it a go. You have nothing to lose and your decision is totally reversible. Good luck!

[Mostew in reply to Otterfield]

Thank you so much for your valuable insight/experience of those meds .

For me as someone who was into alternative approach and stayed away from conventional it’s hard to have the approach of not a big deal (I would have been the same in 2003 !!

Not scared , just aware these drugs are toxic ..

seem to be determined to postpone the moment of taking HU .

The last couple of days my head has been much better !!

Will get there .

Bought the sun hat next thing is the sun cream ... . Also got the prescription so can take when ready !!!

Warm wishes to you . Hope you are enjoying the lovely weather

[Otterfield in reply to Mostew]

I may not have expressed my feelings at the time very clearly. Taking a drug wasn't a big deal because the danger of blood clots really WAS a much bigger deal to me. Another factor was that, at that time in 2003, my sister was going through full on hair-losing, nausea-making chemotherapy for breast cancer, so in comparison my illness and treatment were relatively trivial. Without chemotherapy it's very likely she would have died, as the cancer had begun to spread. I was a committed vegetarian and very much into natural therapies, but I was witnessing first hand that drug therapy can save lives. At that time, medical knowledge was such that treatment for ET was started even at a relatively young age (39 at diagnosis); it's different now of course, but my haematology team did their absolute best for me and I lived a normal healthy life until last year when it all changed. Now with MF, if I didn't take Ruxolitinib I would have an extremely poor quality of life.

We all need to make our own decisions and be at peace with them so I hope you are able to choose what's right for you. Very best wishes.

[Mostew]

It’s so difficult to say things This way. If we were actually talking it wouldn’t happen.

Thank you for taking the time to explain.

My goodness .not surprised your treatment felt relatively trivial. I’m sure I would have felt the same.

So appreciate your kind wishes and support

Xx

[Mostew]

Sometimes life is tricky.

Sometimes things go wrong.

Sometimes you feel out of place

Or like you don’t belong.

Sometimes bad things happen.

Sometimes you might feel scared.

But focus on the positives;

If you seek them, they’ll be there.

If your brain won’t stop whirring,

And you can’t sleep at night,

Step out of the darkness

And look into the light.

The bad things won’t vanish

But don’t let them consume

It just makes you miserable

And intensifies the gloom.

So focus on your blessings

And let them shine through.

Don’t let the negatives

Be what defines you.