ET

[Petsch]

Has anyone ever tried stopping HU after blood is normal and iron is normal

[Annie46]

Wouldn’t consider doing anything without discussions & advice from my haematologist . Consider that your blood results may well be because of taking your your meds regularly ...

[Nickthedevil]

My new haematologist lowered my doseage recently as my platelets were at the bottom end of normal. At my next visit they had gone up but still within normal range at 330 so she dropped it by one more per week. My next appointment is in two weeks so I will find out then if it has risen again. Stopping altogether would certainly make them rise. Karen

[JackLina in reply to Nickthedevil]

Now that scares me! I stopped taking hydroxy on May 8th. due to the unbearable/debilitating effects. I was in too much pain to bear and losing the use of my hands completely. I have just returned from France and although I phoned my nurse to tell her just prior to leaving, I have had no further direction.

My blood pressure is sky high and my right hand seems to be tingling permanently at present. Only since Saturday though.

I have an appointment with y GP on the 6th June when I will be asking for an appointment with another haem for a second opinion on prognosis. Mine is so disinterested and has never done anything but insist I take the drug that is causing more problems than I had. Quality of life doesn't seem to be a consideration with him. Penelope

[Nickthedevil in reply to JackLina]

My old haematologist was exactly the same - when I dared mention quality of life, he offered to take me to the stroke ward and ask their opinion on quality of life as that was where I would end up if I did not continue to take hydroxy! If it is causing so many problems, speak to your doctor about alternative drugs, Karen

[JackLina in reply to Nickthedevil]

Thank you for that. It is was preventing me from continuing my 'minimal' fitness regime. I went from racing around for 1 hour with the dog every morning to not being able to keep up with her and reducing her walks to 30 minutes. Breathless, in pain and unable to straighten my joints. Swollen all over the place and when I lost the use of my hands and my joints swelled as a result of what looked like water retention, that was the limit.

Different person needed for me. I too got the, 'We're trying to prevent a major stroke here' bit. Scare tactics! His attitude causes me more stress and fear than any ET and JAK2 mutation! ATB Penelope

[jeanr]

For me I had been taking one a day of hydroxy I was told the counts were almost too low, so I went to every other day (mid March) and they are immediately climbing - now I have to see what they are going to suggest. It was a disappointment when I saw them rising - they have been doing that steadily now so I go next week and will hear what the suggestion is.

[JackLina in reply to jeanr]

Do you think perhaps hydroxy is not the answer then? It seems to be another of those drugs that determines that you are unable to come off it and that by taking it, we are exascerbating the problem and causing other problems besides. I was told to ignore the warnings on the leaflet and was handed 5 sheets of A4 to read about hydroxy when it was issued to me. I didn't read it (as instructed) but when I started suffering all my symptoms, I did and identified every one of them as a side effect of the drug. When I got to the bit about 'numb, painful and tingling hands and feet' it said to tell your doctor and it usually subsides after you finish the treatment. So what happens if you were told you would be on it for life? It states that hydroxy affects the nerves and this is what causes it. I told my haem. and it was as though I hadn't spoken at all. Penelope

[jeanr in reply to JackLina]

It was the only drug available to me -- Interferon is not offered here in Canada - I think basically its not covered here because of the cost unless an insurance will pay. I was told that if I did not go on hydroxy my platelets would keep rising and because I'm older I was at risk of a stroke. So I'm on hydroxy since 2015.

[JackLina in reply to jeanr]

I'm 66 and until this situation I didn't look or feel any more than 50. I have always kept fit and not being able to continue wth that, when as far as i can see, that is exactly what is needed, is getting me down.

If the haeme just gave me an opportunity to be heard I would feel a lot better. when I speak his fact goes blank and flaps come down over his ears....I swear, I've seen them!

[JackLina in reply to JackLina]

How unfair is that, when all you read is how good you will feel when you've 'finished' the treatment?

[Rastavapa in reply to JackLina]

Lol made me laugh reading that I remember when I was completely wiped out and ill from interferon and reading that it would all be back to normal when treatment stops...... Unfortunately not an option for any of us, although just to add to the thread when I was younger and more stupid I refused to believe I was ill and did not take any Hu for nearly six months I was 28 I think I'm now 44 and my platelets hovered around the thousand mark, I stopped taking 16 capsules a week as I was not really interested in what happened at the time, different story today I take my meds each day but I strongly believe our minds play a large part in out health.....

[Petsch in reply to JackLina]

I get the same reactions. I am so tired of them. They never listen but I’m determined to find someone somewhere that will think outside the

Box

[JackLina in reply to Petsch]

Well, if you find one please let me know. Mine is just bored i think.

[Meatloaf9 in reply to JackLina]

Time for a new hematologist.

[JackLina in reply to Meatloaf9]

Where are you? Any where the North West of England? If you have a good one let me know, please

[Meatloaf9 in reply to JackLina]

Sorry Penelope, I am in the US and go to a hematologist at cleveland clinic and one in my home town in West Virginia. I hear people on this site mention "Guys" all the time. I am sure if you ask, someone will have a recommendation.

[JackLina in reply to Meatloaf9]

To be honest, you are the first who did provide a reply to that question.

Guys is in London and the only detail I have read regarding Hydroxy being prescribed there is for sickle cell anaemia.

I'll give it another go though with that included.

Thank you for your help.

All the best

Penelope

[Mazcd Partner MPNVoice in reply to JackLina]

Hi Penelope, I can confirm that Hydroxycarbamide is prescribed by the team at Guy's for people with MPNs, not just for sickle cell anaemia. Maz

[Petsch in reply to Meatloaf9]

I’m from Cleveland. Who do you see and do you like him. Is he willing to try other things that you might suggest

[Meatloaf9 in reply to Petsch]

I saw Dr. Gerds at Cleveland Clinic and also Dr. Patel who is a fellow at the clinic. I have only seen them one time in May. He did not want to see me for one year, just continue with my Dr in WV.

[Petsch in reply to Meatloaf9]

Did he stop your meds when levels were normal or did you misunderstand him. You stated in a previous post that you thought that’s what he said

[Meatloaf9 in reply to Petsch]

Hi Petsch,

I don't currently take meds except for aspirin. He said if my platelets went higher that He would start me on HU at a low dose and if they came back to normal then we would stop the HU and see what happens, that's the way I remember it. Good luck to you. If you are thinking of seeing him then you can see his bio on the cleveland clinic website and there is a introductory video that he made which you can also watch it's about 4 minutes long.

[Petsch in reply to Meatloaf9]

Do you mind me asking how old you are

[Meatloaf9 in reply to Petsch]

68, how about you?

[Petsch in reply to Meatloaf9]

Do you have jak gene

[Meatloaf9 in reply to Petsch]

I did not ask him to try anything special, he did listen to everything I had to say or ask. Spent over 2 hours with him and Dr Patel. He had an answer for pretty much everything I had to ask him.

[JackLina in reply to Petsch]

The 4/5 minute appointments don't really give me time to suggest anything. Nor does his demeanour. Do as I say or else..... I'm choosing 'or else' and seeking another doctor. Hopefully one who will have a conversation with me rather than bullying.

[Petsch in reply to JackLina]

I’m in US

[lizzziep]

I was told I would have to stay on the drugs even when the platelet levels are in normal range, which they were last month.

[Meatloaf9 in reply to lizzziep]

The hematologist I saw said when he would start me on HU that I would take them until the levels normalized and then stop the HU until the levels went back up, at least that is what I thought I heard. Best wishes to you.

[Petsch in reply to Meatloaf9]

Who and wheee did you see this dr

[Meatloaf9 in reply to Petsch]

Dr Gerds at cleveland clinic, also saw Dr Patel

[JackLina in reply to lizzziep]

Me too. Lifetime! Not a great feeling when the effects are so vile!

[mhos61]

People on this forum have highly rated ‘Christie’s’ in Manchester. Are you anywhere near there?

[JackLina in reply to mhos61]

Not far, so I think I need to ask about it. I hadn't thought of Christies for this type of cancer as I don't think of it in this category.

Thank you