Newbie

[katiewalsh]

Hi. Live in US. Am 64, diagnosed almost 2 yrs ago w/ ET & JAK2 positive. Just started Hydroxy 2 weeks ago after more blood clots discovered. New doc says also hVe MF. Starting HU makes this all more real. Am very concerned about Hydroxy, side effects & risk of causing leukemia. Also concerned at risk of progression into full blown MF. Already have a rare immune deficiency so reduced immune function of HU concerns me. Reading all your posts on this forum has helped me feel less alone. Thanks. Sorry if I sound down.

[Mazcd Partner MPNVoice]

Hello Katiewalsh, welcome to our forum, and there is no need to apologize for sounding down, we all understand how you are feeling, we all have a MPN and know exactly what you are going through. It's really hard when you are told you need to start taking medication for your MPN, if it would help I can send you one of our information booklets on Hydroxycarbamide, email me at [e-mail] with your postal address, we are happy to post information to you in the US. Hydroxycarbamide is a widely used medication for MPNs and is prescribed worldwide. The advice in our booklet regarding the risk of it causing leukaemia is: 'there is also a possibility that Hydroxycarbamide may increase the tendency of MPNs to change to a form of leukaemia, this is very uncommon and it has not been proven that this is a result of treatment with Hydroxcarbamide'. Kind regards, Maz

[mickey64]

Hi Katie, I am newly diag with ET and Jak2 positive, I am also from the US. What part of the are you from? I am from Maryland. I am also the same age as you. So I gather by your post you were just taking aspirin and no meds when you were diag two years ago? I was just diag last month and My Hemo wants to put me on meds right away, what are your numbers mine are 743. You say more clots how did they find your clots and you had clots before?. So before you had ET and now you have MF? I am so sorry I know how you feel, I have been devasted and I was a cancer patient three years ago this has hit me much harder.

[mickey64 in reply to mickey64]

and by the way Katie its ok to feel down, this stuff is so rare, when I had cancer three years ago there were tons of forums and support for it, I meant so many wonderful people that were going through the same thing. This stuff is so rare its hard to find people but this place is the BEST, the are great and wonderful people all pretty much feel the same way, the only difference is most live in the UK which means we can't meet them in person, maybe someday we can. I felt down and still feel down. Over the last three years I have had tons of CT scans, xrays, pet scans etc, I read somewhere where radiation could cause this? hmmm food for thought for sure. How are you doing with the Hydroxy, how much do you take?

[katiewalsh in reply to mickey64]

Hi Mickey. My answers to your questions are a little complicated. In 2011 I began monthly IV treatments for an Immune Deficiency. When they found some blood clots in my lungs ( I was asymptomatic) in 2012 (incidental to a test for something else), they put me on Warfarin and switched my monthly IV treatments to weekly sub-cutaneous. They thought it was risky getting IV plasma because it's so thick. Two years ago a doctor took me off warfarin for a procedure and advised me not to restart warfarin. She thought the PE's had developed from the monthly IVIG treatments and since I no longer did that it would be safe to discontinue. About 2 weeks after the procedure, and off a Warfarin, I ended up in the intensive care unit for 6 days with both lungs filled with blood clots. Shortly after I was diagnosed with ET & JAK2 positive and put back on warfarin. Numerous docs after that suggested Hydroxy but since warfarin seemed adequate at controlling my clotting I resisted. My platelets were in the 300's in 2012 and then began climbing and falling in the 400's to 902 but mostly in the 600's and 700's. I recently began developing PE's within just a few days if my INR level dropped below 2.0. My platelet levels were only in the mid-500 range but a clotting expert said I form cots unusually fast. He switched me to Eliquis to keep my blood clotting levels more even. And then two weeks ago I began Hydroxy. My first week's dose was 500 mg 3/week, this week I'm taking 500mg 5/week. I don't know how much I'll need to get my platelets where my doc wants, around 450. Re ET & MF: I've had a few diagnoses, including some erroneous--worse being told I'd likely die in 8-10 years. But the addition of MF diagnosis was made because my spleen is enlarged and there were signs of a small amount of fibrosis in my bone marrow. I suspect I've had ET for awhile because I had a Tia in 2010 and a 2011 CT scan showed an enlarged spleen. I think there are many reasons this Cancer is difficult but a lot of it because so little is known. I find great comfort in this forum. You have many friends here, even though you don't meet in person. BTW, I live in Wisconsin and Florida. If you haven't already obtained an opinion from an MPN expert I'd encourage you to. Good luck and be gentle with yourself. Katie

[Hidden]

Dear Katie

Welcome to the forum. I understand how you feel. I was diagnosed aged 51 in 2012 following a portal vein thrombosis. Was very scared and though my haematologist is a very nice and knowlegable guy, I felt paralysed at first. Did not know the questions to ask. Found this forum and it was so helpful and supportive.

Know we are all different and react differently to medication. But thought my experience with hydroxy might allay some of your concerns re side effects etc.

After 6 months on anti clotting meds and aspirin, initially I was only on aspirin. I had to start hydroxy as although platelets not that high they were rising again and with previous clot I was considered a higher risk patient. I had same concerns as you. However it has been fine, it has helped me, with no real side effects except tiredness/fatigue but I had that anyway before, though it was worse! The headaches I had disappeared and itching stopped. Dose has been adjusted since first started and is now lower in fact I now only take it twice a week.The only thing I would say is you do have to keep fluids up, drink plenty of water and I take it in eve/at night so I sleep through worse of fatigue.

I see our wonderful Maz has offered to send you information and I sure plenty more members will post with much more helpful information and advice. Just know you are not alone in feeling how you do. Let us know how you get on. Lizx

[katiewalsh in reply to Hidden]

Dear Liz. Thanks for responding. Yes, your experience is helpful to know. Do you have PV? I thought itchy skin was only an issue for PV patients. And will you please explain why fluid intake is important? I see that comment a lot on here but my doc said nothing about it. And about how much extra fluid should I take? Although my current doc is very smart and kind, he doesn't really give me any advice except to respond to questions I raise. I think it's because I'm relatively healthy compared to his other patients who have more serious blood cancers. So any knowledge you can provide would be wonderful!! Glad for you that you're taking less Hydroxy and that you feel better on it. I've never had the fatigue, headaches and other problems many report having. Although I've had life threatening blood clots I've never had the types of chronic physical problems many have had prior to being on HU. Are there any websites you've found helpful A? Thanks, Katie

[Hidden in reply to katiewalsh]

Hi Katie

No I have ET, jak 2+. Re: the fluid intake. My haematologist told me to keep fluid levels up. I have since read somewhere that taking hydroxy can cause raised levels of Uric acid which can cause gout and impact on kidneys. though my blood test have never shown any problem re kidneys and I have not had gout so maybe drinking plenty (not alcohol ha ha! sadly) has had positive impact. Had different suggestions on how much is enough. Sone say 8-10glasses a day. Many people on this site say 2 to 3 litres.

Keeping hydrated also helps with minimising dry skin, for me at least. i always take the hydroxy with a glass of water not just a sip or two.

I know what you mean about been relatively healthy compared to your doctors other patients. I am same despite having had a clot too. But we still need the information to stay that way.! Take Care Lizx

[katiewalsh in reply to Hidden]

Thanks for the info Liz. I'm going to try and get my doc to give me more info.

[Hidden]

Ps. Should have said you might need to invest in body lotion. I now have dry skin. Lizx

[mickey64]

Hi Liz, whow that nice that you only have to take hydroxea twice weekly, are you ET Jak2+ does seem strange how some can get by with little meds and other can't, some have fairly high numbers and some have hugh high numbers. Seems like no reasoning to this. Question if you already have very very dry skin what do you recommend, lotion never worked with me, my skin actually flakes off. Thanks Mickey

[Hidden in reply to mickey64]

Hi Mickey yes I have ET jak 2 positive. I just use an ordinary moisturiser or large tub of aqueous cream which I get from chemist! Not fancy and very cheap. However not had skin so dry it flakes off. Sorry to hear you been getting that must be very distressing for you. I have read posts on this site where people have recommended different things Aveeno moisturiser, Argan or coconut oil. I have used vitamin e oil on one or two very very dry patches (and it really helped) but pure oil is not cheap! So prob not helpful if all over your body.

I do use moisturiser ever time I have shower, bath or wash and would say make sure you keep hydrated, drink plenty water or fluids that definately helps too.

Yes I am lucky with taking so little hydroxy. I probably would not have been started on it so soon as my platelets were not at excessive levels once my clot had been treated. However due to clot am higher risk and they started to rise again and my haem likes to ensure platelets kept well within normal range. Take care Liz x

[linds]

Hello Katiewalsh,

It's OK to feel down, but, try not to stay down too long as you have a lot of living to do.

All of us reach those bleak periods and personally I think we would be strange if we did not - these MPN's are a shock to all of us.

You asked about the amount of water to drink, well to my knowledge it helps the blood and it's condition. It certainly helps with the tiredness, I really know if I have been a bit remiss with amounts. I reckon 8 big glasses of water suit me very well in a 24hr period.

You also sounded concerned about full blown MF. Well I have had MF diagnosed a year ago (previously polycythemia JaK 2 positive) and take a drug called Jakovi or Ruxolitinib. All I can say is this, the meds work for me and I am feeling really great. Don't have masses of energy all the time but when I do I make hay. Now every one of us is different so don't expect our experiences to be yours necessarily, and I don't know what the future holds - but then neither does anyone. All I can say is when you come on to this blog there will always be a kind word to boost you - it never fails, and good advice. You are not alone and so I wish you all the very best and sending you a big smile and a hug.

Linds x

[katiewalsh in reply to linds]

Thanks for the smile & hug Linds, they're nice to receive. How did you know when your MF became full blown? Your experience is encouraging. Katie

[linds in reply to katiewalsh]

Eighteen months ago I changed haemetologist as my original one retired. I was having two monthly venesections at this time and when at the new clinic it was decided that I did not need one for four months as red blood count was low. Now I was thrilled thinking that things were doing well. However, my haem was watching all the readings and asked me to have a bone marrow biopsy as she suspected a fibrosis. I was more than upset and scared but eventually after a couple of weeks thought had the biopsy. This confirmed that I had been through a mutation to mylofibrosis.

This haem introduced me to a specialist clinic at Guy's Hospital in London and I was accepted to go on a trial drug, Ruxelitinib. That was all a year ago and I cannot stress enough how well I now feel. The hot flushes have gone, the itching a thing of the past, sleeping well and best of all my energy levels have gone back to very like normal. I can't walk the miles I used to (I am still working on that one) and I do suddenly get tired often for no particular reason - real fatigue, but, I just go with that and rest. I am 68 by the way and previously of excellent health until four years ago.

I was, like you, in trepidation of MF but my experience is not a bad one so far. I don't take how I am for granted because I realise things don't stay static but new treatments are being trialed all the time and I live in hope of a cure some day .

I hope I have not rambled on too much but when I was first diagnosed I did not know of this blog and felt so lonely and would have loved to have had some input from someone further down the line than me so I hope you are the same. Take another hug x

Linds

[katiewalsh in reply to linds]

Sorry to bug you with more questions but I'm learning from you. What blood work levels prompted them to be concerned you had fibrosis? Also, were all the unpleasant symptoms you described (hot flushes, etc.) when you first went onto Ruxilitinib or before? Do you know when they think your MPN first developed? It sounds like you went from nothing to PV to MF in 4 years. Which seems really fast (and scary).

I'm glad to hear how well you're feeling now and hope it never changes. And thanks for that x thrown in. 😊

[linds in reply to katiewalsh]

Katiewalsh, I am happy to answer any of your questions.

You asked what bloods caused a concern - well, what I do know is because my red blood count had always been on the high side even with venesections (48/49) to then suddenly drop to (41) on two months results it made alarm bells ring. There may have been others signs too but I don't ask too much - I work on a need to know basis and trust my haem's to know what they are doing. This is of course once I have confidence in them.

My PV was discovered after an attack of gout in January of 2012, my blood test came back with a red cell reading of 59.

It was thought I may have had PV for 7 or 8 years without realising something was wrong. I had the itching and migraines (but I had had them for years it is just that they changed to be more frequent). The hot flushes as well which I had put down to menopausal signs that just continued on for a long time. The only other symptom was the tiredness as I began to find the long power walks that I did an effort. I did mention this to my GP when having routine blood pressure check and we put it down to an age thing. However, that bout of gout told us differently. I was immediately given venesections, three a week until level was at a happier state.

So no, those side effects were not because of rux - in fact I have had no side effects from that drug at all. Jolly lucky I am. My migraines are so few and far between now I don't even think of them.

To comment on my seemingly fast transition to MF, to use my GP's words to my husband 'she has been really unlucky at the fast mutation'. However, it is only another word isn't it, in my case anyway. I keep positive which is easy when I feel so good.

I just find walking difficult because I am very anaemic and I get awfully breathless and achy leg joints so it's a good excuse to use our wonderful London Taxi's when needed!

I used to do a lot of interior decorating too but that is now put on the back burner as the fatigue strikes without warning and I hate to leave things unfinished. Not so much gardening as once although I plan to build up to that.

My friends say that they can tell when I am not feeling too good as I go a sort of grey colour. Hope all this helps you.

Best wishes,

Linds x

[katiewalsh in reply to linds]

I'm feeling really guilty continuing to bug you with questions to get educated. Feel free to ignore this if you're tired of my questions. First, thank you so much for taking the time to explain all of this. You also amaze me when you talk about feeling so good yet have the limitations you listed. I had something similar said to me but not about anything as significant as MF. The blood clot specialist I saw said I form blood clots remarkably (2-3 days). But it appears my fix is relatively easy. My question is, you say you don't have side effects from the rux, but what is the cause of your anemia, breathlessness, joint aches and fatigue? Your perspective on your life is admirable. I think I'd be a big baby if I had that. Although you're absolutely right about the marvelous taxis in London. Taxis in the US are often dirty and smelly. Unlike yours, where I'd feel regal riding in them. BTW, I feel incredibly fortunate to have found this forum and you great people. Everyone is so welcoming of me despite my being from the U.S. Be well. Katie

[linds in reply to katiewalsh]

Morning Katiewalsh,

Pleasure to answer you and I am thrilled if any of it helps you. I was really scared when I was about to have my bone marrow biopsy and the help and encouragement I had from friends I had never seen was tremendous.

OK, to answer your questions. The anaemia comes with the condition sometimes, the Rux is inclined to lower red cells that's for sure but I was very anaemic before I started Rux and it was something the medics watched very,very carefully. I did have two blood transfusions at the beginning of this year and things have been OK since. The fatigue is also a common complaint coming with MF you hear lots of us talk about that! The breathlessness comes with the anaemia, with me anyway, and the aching bones and joints I think are also part of the MF from what I can gather. The doctors know about it all and keep a good eye on things.

You know it might sound bad but it's not really, I feel things could be so much worse because I am totally able around the house and short trips out, it's just the long, brisk walks I can't do. At home it's easy to sit down for 15 mins when one needs to.

I don't do lifts and to get to my clinic I have to climb four floors - no problem yet! Please don't think I am a saint - I have had many cheesed off moments that's why I understood how you were feeling. I am just in a good place at the moment and I thank Rux for that.

Have a good day x

[Kathymoore]

Re: moisturizers. Forget the fancy one or the advertised ones. The absolutely best one I have used is the the one that most dermatologists recommend. CeraVe. In plain white container with blue lettering. CeraVe.

[katiewalsh in reply to Kathymoore]

I've heard of CeraVe but never tried it. Is it greasy or sticky? So far my dryness hasn't been really bad and I've found Shea Butter (plain, unscented so no irritating chemicals) to be really good but a bit too $$ to use all over or very often.

[Kathymoore]

Not greasy or sticky, soaks right in.

[katiewalsh in reply to Kathymoore]

Thanks. I'll get some tomorrow.