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Hydroxycarbomide

Hello all,
Sue here ,I joined a few months ago …I have ET jak2 .

Hope everyone is looking after themselves or
Fortunate enough to have a loved one around…

I take hydroxycarbomide 3xweekly …
My heamotologist has asked me to take one more weekly bringing me to 4x weekly …

I feel so worried as heamotologist implied it may affect my hair …it has not done so thus far …

So sorry to sound trivial talking about hair when we all have so much stuff to cope with that is important…

But I just don’t want to lose my hair …

As have already said I have been on this medication for about 3 years ,although hair is dry it’s ok …

Be grateful for any experience in this matter or advice …
Thanking you all ….forgive me if my question is of little importance….

Love to you all ……Sue :grinning:

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Hi @shishabell. This is no way trivial and of little importance. This is a space where you can ask anything, to anyone and if we can’t help personally there is always somebody who can share their experiences or the support line at the end off the phone. I can’t help as I don’t have the same condition but I can imagine how you must be feeling.
I’m glad you felt comfortable asking the question. Keep posting X

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Hello @Shishbell - it’s good to share concerns here as we all get the fears and anxieties that come along - I had 13 years on Hydroxy (I have ET too) and did not loose my hair at any point, it was not quite so thick or good condition thro those years but not anything anyone else would notice just me ! - and I was always on 3 or 4 capsules a day - so I think the reassurance would be you should be fine and it is good effective treatment to keep those platelets lowered ! Keep us posted how you get on

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Hope your hair stays fine
You can only wait and see
My friend in NZ had breast cancer and treatment and lost her hair but now it’s grown back
Different situation I know but we changed the situation into a positive at the time My husband and I shaved our hair off and donated to breastcancer charity
Obsolutely our hair grew back
But I suppose you can only wait and see as your treatment is important please keep us updated
I do hope you don’t lose your hair

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Hi @shishabell I do hope your doing okay? Your concern is not trivial and it is very understandable this should have you feeling worried.
I think with any treatment side effects can play a big part of our anxieties and loosing your hair is very much an emotional topic to even think about. Your consultant must explain all possible side effects and in many cases people do not loose their hair at all. Some notice minor changes to the condition & it is likely that the longer you remain on the treatment the more apparent any changes will be.
Please remember our helpline is always here to talk things through- trivial or not!

Take Care, Lauran

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Thank-you Nichola …
I’m feeling so much better …spoken to another lady who has the same condition and she was on a much higher dose than me ,for a much longer time period also …( her hair is fine )
Your kind words have really supported me …Thank you …
Sue x

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It’s so good to speak to somebody who is/has gone through the same thing. I’m really glad you are feeling better about things today and I’m glad you had the courage to share when you had a bad day. It really is a great place and we are all here to help and support. Sending lots of love and keep us updated on how you are doing X

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Hello Jilly …
Thank-you for your words …
So helpful …
I think I just became so anxious when heamo said he wanted me to take another hydroxycarbomide…which is still ( compared to so many others ) such a low dose …Thank-you for taking the time to get back to me …
Sue :pray:

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Thankyou so much …
Sue x

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Thank you …
I have had so much support and really helpful information…
It seems that although my hair may become dryer perhaps a bit thinner…
I will not lose my hair …
Just became anxious when increase of medication was mentioned …
Thank you once again …
Sue x

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This is great to hear
So glad your feeling less anxious

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Hi @shishabell I am so glad that you had the courage to post how you are really feeling and thinking.
Hair is definitely part of our identity and so, so visual.
I have had skin cancer on the top of my head and sport the Friar Tuck look and my hair is very thin.
I joked that I had a bird bath on the top of my head and that migrating birds used it as a stop off point when I was off on my walks. There was a lot of real feelings behind my mask of humour. If I thought about my hair I would not leave the flat.
I have just had a further op on the top of my head and lost more hair. Currently I am having it dressed every other day and each time more hair comes of with the dressing plasters. How will it end?
One side issue is that I get so much more ‘sympathy’ for a visible head plaster, for something that is not life threatening, than for a blood cancer that might be !!
I am off to the GP nurse again now to have the dressing changed and more hair loss.
Yes, your post is so valid, please keep posting how you are.
How do or have others felt?

Hi there Sue
I am JAK2 ET and have been on Hydroxycarbamide for years but as I was bald already hair loss is not a problem. Actinic keratosis (pre cancerous skin damage from UV) means that I wear a hat, so again - not a problem. Splitting and thinning fingernails however is a problem (which is strange as my toenails are stronger and harder than ever)! If you read the list of possible side effects of Hydroxy I seem to experience virtually all of them to some degree but most are intermittent and not disabling. I also am a bit slowed down by Atrial Fibrillation (hence a pacemaker and various blood thinners etc)
My message is simply this - keep taking the capsules and enjoy life with a few adjustments when necessary - and count your blessings…
Good Luck!!!

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Hi Sue

I have ET jac2 and have been taking hydroxicarbomide for 6 years. One a day and 2 on a Sunday. My platelets are stable and no problems with my hair. I didn’t go to the hairdressers for 15 months when covid appeared. I could almost sit on it by the time I plucked up courage to go and get it cut

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Roy,

Being male and also old, I agree I can live with hair loss. But I have never heard of brittle nails being caused by the medication. Could it be something else such as your calcium level? I haven’t looked it up so I could be wrong.
I have had skin damage though.

Jumbo4

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Hello Jumbo4
I don’t know where I picked up on a link between HU and onychoschizia (as this condition is apparently known) though re-reading the HU package leaflet I do see mention of “wasting of nails” as a very rare side effect. On further research I see a possible cause (apart from excessive washing (!)) is mention of “lack of zinc or iron” and HU certainly lowers blood component levels and I am consequently ‘borderline anaemic’.
Both Cancer Research and MacMillan talk about problems with nails when on chemotherapy and targeted therapy drugs so that is maybe what I took as confirmation that this is not a ramdon happening.
After a less than pleasant experience with Efudix to treat my Actinic Keratosis it got rid of my pre-cancerous patches and I wear a wide brimmed hat at all times (outdoors!)
Enough about me…
Good luck - and keep taking the tablets/capsules !!!

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Hi Roy I had 13 years on Hydroxy and yes all those years my nails were effected splitting and not growing and my toenails were hard and brittle - it is a well known side effect of HU. I have been on Pegasys the last three years and my nails are back to normal, being a girlie I like that and using nail varnish again and my toes are more comfortable! Well we got some random and odd side effects eh! - but the meds keep us going and safe so it’s worth it - all the best

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Hi Sue,
I have the same condition. Been taking hydroxycarbamide for a few months, one 500mg a day. My hair is fine.
Keep well and keep asking questions xx

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A great big welcome to our forum @Rolande, you have already shown the value of our forum by sharing your experiences.
I really look forward to hearing more about you and look after yourself.

Welcome @Rolande. So great you can share your experiences. I hope you are well and look forward to hearing more from you x

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