Has anyone been on meds for over 10 years ?

[ourlife]

When I was diagnosed 12 years ago my Haematologist (I must add that he was not a nice man!) told me right from the beginning that my ET probably wouldn't kill me - but being on Hydrea 'long term' would - his opinion was that if the condition itself hadn't turned into Chronic Myeloid Leukemia (CML) within 30 years, then the Hydrea would have caused it. Of course, this has always stuck in my mind - and probably has a big part to play in my interest in trials/research. I have only ever met one other person who has been on meds longer than me (the whole 12 years) - how about you ?

[BlessedWithSix]

I am very interested in this topic. My oncologist won't tell me anything. I see him Tuesday and then will go for another opinion or two. He says and I quote, "I can't tell my patients they're dieing." I honestly think I'm his first or second case.

[marianela]

marianela

I was diagnosed fifteen years ago and was on Hydra until last year - was taken off Hydra because I developed two horrible ulcers on my right ankle which took one year to clear up.

I have ET. My platelets of course went up dramatically, although I was taking aspirin every day - so it was suggested I should have an injection of Phosphorus 42 (this was prepared in Poland as here it was no longer used) it was a radioactive preparation and I was treated with it at the Department of Nuclear Medicine at Castle Hill Hospital. I felt quite ill after this and decided I would not agree to have it again. It did bring down my platelets which now stand at 516, but still have the usual checks and blood samples sent to the lab. I was also told (at the tme of diagnosis) that my life span would not be shortened by the ET. I guess this is true - as long as leukemia does not make an appearance. I do lead a normal life though do feel tired a lot of the time. Hope this has been helpful to you.

[ourlife in reply to marianela]

Yes, thank you - I was glad to come off the HU. Have you tried Anagrelide? I was on it for a year and it did help some of the side affects but unfortunately after a year wasn't controlling my platelet count as well as Hydrea did so I was glad to be offered a trial drug.

[catkinspolymer]

Hi ourlife,

I have been on Hydrea since 1996 which i make 16 years, Now about 12 X 500 mg tablets a week. My hematologist who is a true Scottish gentleman who come south of the border to help us sickly English thought that statistics at the time showed 5% go to leukemia but they might do that anyway . Since then when i was a member of MPD net for 13 years I have not heard of many one maybe two cases and feel that its probably lower than that . For lucky me no side affects maybe some dry skin , fatigue sometimes but i was getting that any way . My advice is try and find a more helpful hematologist.

all the best Chris town crier

[ourlife in reply to catkinspolymer]

Its good to hear that you are doing so well I was on 21 pills a week and not controlling my symptoms,

[beetle]

Hi

I have been on Hydrea for 18 years with a 2-3 year gap when I was on Busulphan early on. My ET has now progressed to Myelofibrosis and having lived for so long with a condition that truly interfered very little with my life I am now struggling to come to terms with fatigue and other symptoms that are affecting me daily. I understand that the progression to MF is very rare from ET. More recent treatment philosophies tend very much towards the wait-and-see and do not treat until absolutely necessary. I have to say that despite moving several times I have been very lucky with haematologists, although their opinions do vary a little so I would agree that finding a haematologist that understands MPN and can relate to patients is vital. Sometimes easier said than done though!

Good luck anyway

[ourlife in reply to beetle]

Hi beetle I was told early on that after 20 years on HU the bone marrow could become brittle, is there a difference between this and MF ?

I wish you well in learning your new limitations don't feel guilty if you need to stop and take a break.

[beetle in reply to ourlife]

Thank you, Ourlife. I like the phrase " learning your new limitations"! I have had, and successfully raised, four boys (all born within six years!) and worked part time also so you can possibly imagine the pace of life I was once used to? I think you are very right in advising me not to feel guilty when I need to stop and take a break - as I now realise that that is exactly what I do feel. I recently watched the film "28 days" in which Sandra Bullock is in rehab for alcohol and drug abuse and at one point she has to wear a sign around her neck saying "challenge me if I do not ask for help"! Maybe I should picture myself wearing the same sign?!?! ( It was a brilliant film - with humour and pathos. Well worth a look if you haven't seen it!)

I imagine the brittle bane marrow that you were told about was a layman's term for MF. I still understand that progression from ET to MF is very rare though - I think I have read 5% somewhere so the odds are pretty good against. The glass would be way more than half full!!

Take care and keep well

[Dingwall1979]

Hi our life

I was on hydra for 7 years and after bad side effects with my stomach I changed to interferon and am now on pegulated interferon - the side effects to start with on interferon were quite strong at first ie fatigue, flu like symptoms and headaches but I was on a very high dose of 9 mega units 7 days a week once my counts shot down which took about 4 months I was on the regular/standard dose of 3 mega units 5 days a week and I could manage day to day life just fine with just the standard fatigue that we all suffer from with our mpns! I was so happy to go on interferon and wish my heams had put me on this sooner - my counts went under 400 for the first time since I was diagnosed ten years ago as well as studies have shown that both interferon and more so pegulated interferon can halt progression as well as reverse fibrosis in your bone marrow which makes it a lot less likely for your condition to progress to leukaemia - also no evidence that this medication develops any other chronic illness in the future. if you do have any concerns on Hydrea would definitely have a chat about other alternatives - obviously you do inject interferon into your tummy yourself which I know puts some people off but as someone ten years ago used to faint at the sight of needles I was doing it every day and did get into the habit of like brushing ones teeth in the morning - you can also arrange for your local nurse to do this for you. Obviously very happy I now only have to do this once a week with pegulated interferon. Any queries obviously happy to help I have found this list absolutely amazing and really feel that now we can all chat to each other about our mpns our quality of life and outlook will become a lot brighter! Take care

[beetle]

Dingwall, I am glad that you are doing well on IFN. I know it affects different people in different ways. However I believe you are incorrectly claiming (as under another topic on this forum) that IFN can actually reverse fibrosis. This is probably misleading to folk as I believe there is nothing out there at present that can actually reverse fibrosis - I'd be first in line if there was! I'd be delighted if you could direct me to the scientific evidence to support your claim.

[tdavies1]

Diagnosed some 13 years ago and refused to go on HU. Fought for pct to put me on interferon A. Great consultant supported me and funding obtained been on interferon for 12 years. Initially difficult but now have 7miu a week and platelets well controlled. Rational for wanting it was it is a natural product, no cml issues. I would insist on Inf

[jeanr in reply to tdavies1]

I was interested in your post and interferon A- I'm at the beginning of this journey - so sorry if I don't know a lot - but does interferon A have any long term side effects? and why if its a natural product isn't it prescribed instead of HU?

[MichaelS]

I was diagnosed with PVR in 1983 and was put on Busulphan for a short while but then on Hydrea, so I have been on it for nearly 30 years. The largest dose a week I took was 3 capsules one day alternating with 2 the following day; but I am now on 6 capsules a week and have MF which was diagnosed in 2010. I think that I have been well cared for and I seem to have been fortunate that I have not had any big problems with my health. I did have acid problems but eventually I found out that the increases in platelets causes a higher histamine which cause acid in the stomach. My GP prescribes 1 capsule of Omperazole daily which seems to stop the nausea and acid indigestion. I am now fast approaching 66 and enjoy walking, skiing and life in general. I think I am the lucky one.

[ladymoi]

I was diagnosed 14 years ago following 2 brain haemorrhages within 3 months and have been on HU for most of that time. When I discovered there was a risk I would get Leukaemia and, in my case, that would not be treatable I changed to Anagrelide but had to revert to HU when the trials for that had to be closed due to unfavourable results. My dosage has increased as my disease has progressed and I am currently on a course of 30x500mg a week, self inject with filgrastim weekly and take a load of other very serious medication as I have been diagnosed with a major risk of thrombiotic complications. Having said that , I feel marvellous, and people say I look it, and I am always busy and active. Maybe I am lucky because I have a brilliant consultant whom I see frequently(although he doesn't mince his words!), my youngsters keep me busy and mentally challenged and I have grown to really enjoy my daily glass or two of red wine(only because it's good for me of course).It is great to know there are others with the same or similar condition as it "normalises" our condition and I went to one forum in Edinburgh a few years ago(no-one there had 2 heads) but unfortunately i wasn't able to hang round to socialise with other people. I wish I had been told that ET wouldn't kill me. Wishing you all the best and lets all aim to break records here.

[carlsbad]

I have been on myelosuppressive treatment since 92. 7 yrs Interferon, 13 years HU and now on pegasys (the longer lasting INF). HU has been used for decades and has served many MPN patients well. Some have been on it for over 30 years with no complications.

It is not a drug for young patients or those still wanting children.