I need your help!

Hi all.Please advise me with your experience. After 9 years of just venesections and aspirin to treat my PV, I am told it's time to start treatment to lower my platelets. As I am 47 and have always said that i don't want hydroxie because of the leukemia risk, my heam has told me it's my choice whether I start interferon or hydroxie, I know she is leaning to the latter. I'm scared of both and really need to know which way to go. I have researched both, that just fills me with more fear and I know that if I couldn't tolerate the interferon I could then change to the chemo. I also need to know, once we start the drugs, do we ever come off them or is this for life? Sorry to sound like a wimp but I am pooping myself. Thank you in advance. Mel x

24 Replies

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  • Hi nine years for me too am ET -MF. When I was just diagnosed with ET my pleatlets where very high so was put on hydroxie after a few years was also put on anagrali i was on thesetablets a few years. We had a new specialist he took me of all all tablets now only take baby asprin ! Been free of tablets 5yrs . I hope this has been some help to you . We have to have trust in are specialists but also have some say too! X

  • Hi nine years for me too am ET -MF. When I was just diagnosed with ET my pleatlets where very high so was put on hydroxie after a few years was also put on anagrali i was on thesetablets a few years. We had a new specialist he took me of all all tablets now only take baby asprin ! Been free of tablets 5yrs . I hope this has been some help to you . We have to have trust in are specialists but also have some say too! X

  • HI Westlieght. Thank you for your reply, wow 5 years drug free, good for you! This has given me some hope. Thank you Mel x

  • Hi Harley davidson, I have a grandson called Harley! I have PV. I was on venesection and aspirin for 8 years. I started Hydroxy September 2013 when I was 59 my platelets were around 850 at that time. I was really worried and held out for as long as I could. Now, I don't know what I was worried about. I started on 500 mg 7 days per week . My platelets reduduced really well over the first 4 months, I now take 500 mg 6 days per week. There are fluctuations in my platelets when I have a cold etc but my dose has stayed the same. I have no side effects, work full time and have 6 grandchildren to keep me busy. I really don't know what I was worried about. I walk lots, drink loads of water and eat well. I still have a glass of wine when I feel like it and don't beat myself up if I need to go to bed early. Yes, it is chemo, but such a small dose. I feel I am very lucky as I don't suffer from a lot if the symptoms that people on this site suffer from. I don't know if I will ever come off the drugs, but for me, it is no different than taking an aspirin. You can only try it and see how it works for you.

    Best wishes

    Judy

  • Hi Judy. You do not look old enough to have 6 grandchildren!!! I have 1 granddaughter (the light of my life) and a grandson due in November. I work 6 days a week but only do 32 hours due to fatigue. I have been dieting this year and lost 2.5 stone and am now a healthy weight with a healthy BMI and walk and do yoga. Ironic that I get healthy, lightest I have been in 25 years and platelets go up. You have cheered me up and I feel a little braver. Thank you. Mel x

  • Hi HE,

    I was in your position some 7 years ago. I had PV for 2 years and venesections were debilitating and causing an increase in platelets. So I too did the research (on US sites, no great Health U locked then) and knew I was heading for Hydrea or Interferon. Doc only had Hydrea option and I accepted it very reluctantly. I didn't get on with it. In hindsight it was both emotional and physical. I got switched to pen Interferon ( am so grateful) and then to Pegasys (even more grateful). Emotionally I wanted this. But it hasn't been a smooth ride. I loose a day after injection due to 'flu' symptoms and I get mood/physical dips at different times during the cycle which is now 1/4 dose every 5 weeks. But I am committed to this treatment and 5 years down the line it works very well in controlling counts. I just wish I was like piggie below with some much energy.

    You are lucky to be given Interferon option - my opinion. I think I understand the principles of how it works and it makes sense in my universe.

    Most of us on PV have to take some action to keep red blood cells in check. So it is probable you will have do something for the rest of your life. But once you get used to it - and this may take months - then it will become routine and hopefully it will slip into the background. This is how I am now.

    I hope this helps to reduce the emotional misery you feel at the moment. It is a big step but a necessity.

    best of luck.

  • Hi Mport. It is great to have a reply from someone who has tried both, thank you for your insight and support. I am glad that it becomes normality and that you are well. Best wishes Mel x

  • what are your counts ie platelets, hct and WBC?

  • Hi Ainslee. HCT normal 43, WBC 14.2, had worse, platelets 606, worst so far. I have been given a months grace to try to reduce so am eating pomegranites and fish like its going out of fashion. Mel

  • first of all I am not a doc but having read all the main forums including the US ones and been to the MPN conference at the Mayo and heard and read a lot of the experts views on platelets including Dr Mesa , Spivak and Silver I am surprised your doc is suggesting hdroxyrea for platelets of 600. I have just read a post from another forum and it is answers from a question on platelets , the answers are from the docs I mention above and as you may know these are the top docs in the world and they don't think platelets under 1 million are an issue and Mesa says he would only treat that with aspirin if under 1 million , I f you can let me have your e-mail address somehow I will scan and e-mail this info. Your WBC are not bad and your Hct is good so if it were me I would definately get a second opinion from a MPN expert before starting Hu for platelets of 600. I am sure that there is info written by Clair Harrison on when or when not to teat platelets, maybe Maz can tell you where to find it.

  • Hi Ainslee. Sorry i've not replied before but I broke my foot and have been off work and unable to access my emails. Thanks for your reply, my email is melanie@barrettestates.com and the info you have would be appreciated. Thank you Mel

  • Hi harleydavidson,

    I cannot comment on PV or interferon but---I have had ET for 27 years and have taken hydroxurea for all that time with no ill effects yet. I am now 77 years old. Just my experience but wanted you to know that there is at least one long term HU user out here who is doing fine. My best wishes to you.

  • Hi Jocro. Thank you so much for replying, so glad you are doing so well. Mel x

  • Hi Mel, I also have PV, had it for 26 years now, and started on hydroxyl really early. My understanding is that in PV the platelets need to be kept lower than a million. I'd been off hydroxyl for about 5yrs after a glitch when all my cell lines went really low (I even had to have transfusions!). Then my platelets crept up over 400 and I went back on it to bring them down. When beginning hydroxyl I feel a bit sick but either it wears off or I he used to it. Interferon has never been offered me, probably wasn't around when I was diagnosed. Good luck with whatever you decide, but don't panic about the chemo.

    Best wishes Fee

  • Hi Fee. Thank you so much, you all make it sound so easy. I have been given a month to decide and am living on pomegranites and fish to try to lower my platelets naturally. Fingers crossed. Mel x

  • Hi Mel, I also have PV, had it for 26 years now, and started on hydroxyl really early. My understanding is that in PV the platelets need to be kept lower than a million. I'd been off hydroxyl for about 5yrs after a glitch when all my cell lines went really low (I even had to have transfusions!). Then my platelets crept up over 400 and I went back on it to bring them down. When beginning hydroxyl I feel a bit sick but either it wears off or I he used to it. Interferon has never been offered me, probably wasn't around when I was diagnosed. Good luck with whatever you decide, but don't panic about the chemo.

    Best wishes Fee

  • I am older than you Mel but I feel exactly the same. Just about to read the replies, I hope you get some good advice.

  • Hi Shellsween. Thank you, every body is so helpful, I'm glad to have joined this forum. Mel x

  • Hi there. I started on hydroxy at age 47 but it didn't suit me. I had dreadful digestive issues and felt terrible. I started on peg interferon last year after much personal debate. My biggest concern was the risk of depression. I have not had to worry. The drugs side effects are minimal . I have a slight fluey feeling the morning after. Taking a couple of paracetamol works. I have 2 young children one with learning difficulties . At the beginning of last year my husband lost his job, my sons SEN tribunal decided not to fund his special school and we have had to move him. So I figure if I can get through all that and still be a glass half full person then I don't need to worry about the possible side effect of depression . My counts are stable but I still need approx 4 venesection a per year . It is not a wonder drug as regards to symptoms. I still have days when I feel like I am wading through treacle, my spleen is massive so I have a lot of discomfort there and I have a weird muscular, tendon pain in legs, back , shoulders etc ( still to be diagnosed) I am very interested to discuss with my heam , the possibility of Ruxonitilib. I read recently that it may soon be available for PV. I would be very interested to hear from any one taking it for PV as I understand it is being trailed at the moment.

  • Hi Titatagg. What a lot you have had to endure and yet you are still positive, you are an inspiration. I hope you get some answers from your heam and that your spleen reduces in size. Thank you for taking the time to reply and get better. Mel x

  • You're doing the right thing. Ultimately, it's you who is responsible for the decision and, although being informed might not make the choice easier, your involvement will help that sense of having control of your situation. I have PV and ET and have been taking hydroxycarbamide for two years with no evident side effects. After 9 months, my blood counts settled with 500mg daily, doubled at the weekends. I was anxious at first and but all has been well. When things change, I'll do just what you're doing, listening to my doctor, informing myself and seeking others' experiences from this superbly supportive group.

  • Hi Jak2posative. Thank you for your reply and your support. We do belong to a fantastic group don't we! Stay well. Mel

  • You're doing the right thing. Ultimately, it's you who is responsible for the decision and, although being informed might not make the choice easier, your involvement will help that sense of having control of your situation. I have PV and ET and have been taking hydroxycarbamide for two years with no evident side effects. After 9 months, my blood counts settled with 500mg daily, doubled at the weekends. I was anxious at first and but all has been well. When things change, I'll do just what you're doing, listening to my doctor, informing myself and seeking others' experiences from this superbly supportive group.

  • Hi, I've just passed my two year anniversary and was on interferon for around 11 months but It didn't agree with me. I've now been on HU for just over a year and been fine, I was worried about HU but at the end of the day I need to take one or the other. The choice is yours, maybe try Interferon!

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