Hi all, I'm grateful for a place to ask a few questions of those dealing with MPN.
I was recently diagnosed after seeing my doctor for burning feet and tight sock feeling periodically over the past two years. Naproxen was controlling that to a point.
I have been on Hydroxy/500mg day for one week; trying to lower platelets count from 1096 +. I also take an 80 mg Aspirin to avoid blood clots. I'd like to know what side effects you all are experiencing. Headache is my most bothersome and I have noticed some weight loss (and I don't mind that) but I don't want it to get out of hand. My skin is so dry. My spleen is not enlarged. I'm waiting for my bone marrow biopsy to narrow down my particular diagnosis; maybe ET he says. I have a trace Jak2 showing up.
Will there be hair loss? How long before a drop in platelets? I'm unsteady on my feet and lacking the strength I used to have. A Mediterranean diet and 3 hours of exercise a week is what my hemotologist recommended. I don't have the strength for 3 hours a week quite yet... I'm floundering with the diagnosis and don't want to tell my extended family. My little sis just started chemo for bowel cancer...adding one more diagnosis like this is just too much for my aging Mom. (97). My kids have been great, but are worried. Anybody out there have some insights to cope?
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mumblipeg
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One of the important things to understand about MPNs is that while they are "blood cancers" conditions like ET and PV are chronic diseases. Properly managed, someone with ET/PV can expect to live a normal lifespan, particularly with the newer treatment options we have now.
I would suggest first wrapping your head around your diagnosis, being sure you know what it is and what the prognosis will be. Then you can share with your friends and family in the proper context. Note that you are not adding to their burden, you are engaging your loved ones, who will want to know.
It sounds like you are dealing with some of the typical MPN symptoms. Fatigue is the most common MPN constitutional symptom. Erythromelalgia is also pretty common. There are strategies to deal with both these symptoms. See the links below regarding fatigue. Erythromelalgia is a microvascular issue that can respond to antiplatelet therapy such as aspirin. Note that some people need a higher dose to manage the symptom such as tasking the aspirin 2x/day. This is something to discuss with your MPN care team.
It is important to note that with platelet levels as high as you indicate that there is also an increased risk of hemorrhage (bleeding/bruising). Some people develop a bleeding disorder called Acquired von Willebrand Disease. Some can experience excessive hemorrhage even without have the AcqvWBD. That used to happen to me whenever my PLTs were nearing 800. Your MPN care team has likely already run a von Willebrand Panel and checked your PT/INR (prothrombin times). It is worth noting what those results are.
There is some information to be aware of when you initiate chemotherapy like hydroxyurea. Here is some information you may find helpful.
We are all different in how we respond to the medications used to treat MPNs. Some tolerate HU and can benefit from it. Others cannot. I am one of the latter. I was refractory to and intolerant of HU. I have done much better on the pegylated interferons. Note that my response does not predict yours.
We all respond differently to the medication. Hope you are lucky and don't have side effects .and symptoms you are experiencing will lesson with treatment .
Anti inflammatory Mediterranean foods are going to help . Slowly increas excersise . Do a tiny bit more each day .
headaches and unsteadiness, lack of strength can also be caused by vitamin deficiencies, particularly B12/ folate. Did you Dr check all your vits/ minerals to rule out these possibilities? If not, I would recommend that you request them ( or get GP to do them) so they can either be ruled out, or if deficient- dealt with.
Many of us here had co-existing vitamin deficiencies, it’s not uncommon in today’s world . In reality doctors know very little about them and how to treat them too, as they are just not taught about them.
ask for: Vit D, B12, folate, iron panel, thyroid ( TSH, Free T3 & T4, thyroid antibodies) Always get a copy of your test results with reference ranges. Please note that being low but still in range is not necessarily “optimal” for good health. Happy to recommend some excellent books if you have concerns / questions about your results. .
Just helpful to have the complete picture, as some things are easily remedied. For me personally, sorting out my Vit B12 deficiency was life changing.
I lost a little bit of hair when I first went on hydroxy and it can cause skin issues, but everybody reacts differently, quite often no side effects at all. You’ll know more after bone marrow biopsy which will confirm what type of mpn you have, you may get a change of treatment then, but hydroxy seems to cover a lot of things.
As you’re over 70 (as am I) you’re highly unlikely to be offered a stem cell transplant, the cut off age in the UK is 70.
Also you need to see an MPN specialist. Ask any questions you have on here someone usually knows the answer or can point you in the right direction.
I don't think anyone else has mentioned the exercise. I am almost 83 and suffer from the usual issue of tiredness. However, I still make myself take a walk every day for at least 20 minutes (in my case I use a rollator but you could use a walking stick). This all adds up. Exercise can be just walking - nothing more strenuous until you feel like it.
I have ET and have been taking hydroxy for 4 years. At first slight hair loss but not noticeable. Skin is very dry and I have got used to using good plain moisturising creams all the time. I also had migraine headaches but when platelets are down to below 400 I rarely get a headache.
I floundered with the diagnosis at first but as you learn more this will settle . It is scary at first but realising that you will improve as your symptoms settle should help. Do not try to face everything at once and just keep learning from this site. Ask your MPN adviser plenty of questions. I used to write a list in duplicate and give mine a copy which helped her to answer.
You were asking how long it would take to get platelets down to normal. Mine settled in three months - but it can take longer. I wish you peace as you absorb all the new information.
Good points in this post, well done with the exercise, your right, any exercise is better than none, even a five minute walk is a good start and build up slowly as fitness improves.
It’s well known exercise is one of the best helps for MPN fatigue, rather than thinking about 3 hours a week it’s better to do some daily or even shorter ones several times a day, ie keep moving, it’s also good to help avoid clots etc
right now it feels a bit overwhelming, we have all been there and don’t underestimate how you feel, however with time in 99% of cases we get used to having a MPN and it just becomes a part of your life instead of dominating it. At the moment it’s all new and you are a bit in the dark, that’s temporary.
My advice is to over time make sure you have a good Haem and if he/she is not a MPN expert try to have access to one that you can see to get a good treatment plan and who you can see soon then say yearly or sooner if you need to. If you are getting a BMB you can show them your labs and BMB report or slides.
Sometimes we need to try different meds to find the right one, Hydroxy can thin hair and nails for some but not all, you could for example ask about Besremi or Pegasys once you have a clear diagnosis.
Of course nobody wants a MPN but in a way although you don’t feel it you might be in a relatively good position, I know several MPN veterans who have had it for 30-40 years and that’s with the current or previous meds, meds are changing fast now. Your at the start which of course is the preferable stage.
It’s a good idea to try and slowly learn as much as you can about your MPN and possible treatments, that way you don’t just rely on what a particular doc tells you. Read and ask plenty on this forum and maybe others.
There is time, it’s a marathon not a sprint, it will take a while to calm down but try to do that, most of us on here are living pretty normal lives with our MPN’s.
Re telling the family , that’s a personal one as to when to do it and of course it depends on how to explain it, in some ways it may help to tell them now to offload a bit, on the other hand if you settle a bit and see the future as potentially being quite positive you might convey the message more constructively.
It will be interesting to hear how you are getting on so keep posting, you will get good support and hopefully some good general advice on here.
I’m very grateful for your words of advice. I’m gathering all I can to learn and prepare for the rest of my life. I’m hopeful. I’m tolerating the Hydroxy wilh a minimum of side effects; awaiting bone marrow study and biopsy results. Your encouragement is what I needed. Thank you.
Sounds like you and your family are going through a lot! I have polycythemia for 4 years and am on aspirin and Hydrea 500 daily.
At first I was very tired but I would allow myself a short nap for an hour and then would feel refreshed . I also was told to take 3 vitamin d for the foot burning sensation which has worked beautifully!!!
I am consistent with working out running or walking 4 times a week . I did not lose weight but gained some over the years definitely Hydrea related .
Give your body time to adjust . Get enough rest and eat balanced meals.
Hi mumblipeg, one of the key things to know is this Forum is here to help.Over the couple of years I’ve been here so many people have shared their experiences and feelings and it’s been an honour to learn from them and hopefully contribute from time to time. For instance the itchiness can be so intense you want to scratch you skin to ribbons but here will be the place many suggest what worked for them. I took advice and used Cetirizine, also a proprietary cream ‘Cetraben’ which again helped hugely, all from recommendations from this forum. Of course it’s not trained medical diagnoses but they are tips passed on by folks who are getting though the same problems. So welcome aboard - and make sure you get proper MPN professionals looking after you not just well meaning general practitioners. Paul
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