I was diagnosed in 2007 with PV, at 40 years old. I have been told all along that it's not cancer exactly, but cancer-like. Well, I finally got my doctor to admit that it IS cancer, "a rare form of a non-curable progressive leukemia". I guess I should have asked more questions but I didn't know what questions to ask. The past 3 months have been hard: fatigue, stress, depression, memory issues, and lack of support from anyone really. My main question is that I don't know what issues to blame on PV, medication, and what are from being an almost-50 year old woman! I take Hydroxyurea (1000mg M-F, 1500 SS), and 2 full strength aspirin everyday. Plus, I take meds to help prevent migraines that I have suffered with since I was 20. I am made to feel like I am over-reacting. I'm not even sure I'm happy with my doctors! Any words of wisdom are much appreciated!! Thanks!
New Gal...: I was diagnosed in 2007 with PV, at 4... - MPN Voice
New Gal...
Hello. I take hydroxycarbamide for ET.been in it for just over one year. I do experience fatigue sometimes but I think it's part of the illness.I live a fairly normal life..emotions do run high sometimes. When I feel tired I just have a rest. It's an invisible illness so people don't seem to sympathise. Just carry on as best you can. Try not to worry.
Hi there BeckyM4, glad you found the website. Firstly, sorry to hear how challenging things have been for you. The previous reply is on the money.... It's an invisible disease and others can't understand your problem! I was diagnosed with PV when I was 36. I'm now 60 and the PV has since progressed to myelofibrosis. Yes, it's a feeling of exhaustion and uncertainty. The best thing that can be done, if you're willing, is to get adequate rest, eat healthily, drink plenty water, stay away from stressful people and situations. And spend as much time caring for yourself as is humanely possible. Medicine is far advanced compared to 25 years ago when I was diagnosed. Your specialists are there to help you. This is a change in your life, but certainly not an ending. Try not to get caught up in any fear aspects as that will only stress you out. Instead, focus on all the positive advantages of modern medicine. They have saved my life, and that's the truth. One day at a time. Take care, Jeanette 😇
Hi Beckym4, good to have you here so welcome onboard. Im recently diagnosed pv age 42 and i have to say one of the most challenging things to get my head around is this word cancer! I sometimes wonder how different i might feel if that word was taken out of the PV vocabulary! I think we all try hard to separate the physical symptoms of the condition and those which are to do with the anxiety of it all. That can be hard when there is so much going on in our lives. Im very glad ive found this forum, its helped me gain some perspective and faith that I can have a normal(ish) life afterall. Take care.
Hi Becky
I was diagnosed with PV 2011. I am on same dose of hydroxycarbamide as you are. Hits you hard initially and reading the literature just plain scary. I think the emotion that these things always happen to other people, not ourselves has a bit to do with it. Eventually though it just becomes part of your life and the merry-go-round doesn't stop. Thank goodness for that. Uptimes you can forget there is anything wrong with you, just keep taking the tablets and cut down to little or even better, no red meat. Downtimes you just accept and at least you know why you feel bad. You know it is a bad phase and it will get better again quite soon. Drinking lots of water makes a massive difference, in my case anyway, with the pruritis.
What we can all say on this site is that the empathy is absolute. We know how you feel Becky. You know how we feel. Human understanding goes a long way. Love to you❤
I'm on the same dose of HU as you for ET. I often feel tired, do get aches and pains but that's mostly due to arthritis and being in my 60's! I'm retired so if I feel tired in the afternoon I can have a 10 minute nap which is great! I tend not to use the "C" word regarding my illness, it's such a depressing word. We are lucky in one way that our illness is invisible, but that also means other people aren't aware of what we are going through or feeling.
You'll find lots of info on this forum. It's certainly made me feel better about my illness.
Best Wishes
Lizzie
First of all please don't panic ..there are very many of us here with your same illness . But you need to know ,we meet at forums and patient days and realise many have been diagnosed years ago ,,they can relate to all the symptoms ..but we learn with time to cope and we get to be experts ...stress is a real trigger ,try to learn to calm your body with slow deep breathing ..even in your car you can do this easy exercise .we seem to need extra oxygen ..and lots of water too. Carry water with you and filter the tap water ,you drink. Read and learn ..yoga books and diet books about cancer are a help. The more you learn the better you will cope ,,ask on this site for all the support you need ..we talk about most things ...twinkly. Xx
I know just what you mean. You don't want to 'make a fuss' but the symptons can be a pain. Some of what you feel may be due to your age, I was way past the menopause when diagnosed and I had all the symptons of that before the ET. One ray of comfort may be that after the menopause my migraine disappeared.
Sally
Welcome! Since I was diagnosed with ET earlier this year this site and all the lovely people on here have been a huge source of strength and understanding. The replies to your post have been especially helpful to me in that after all these months the penny has finally dropped and a shift in my mindset has happened just this morning. I've just 'got it' that all the advice, understanding and information can lead you to the point of becoming at peace with yourself and your new life from here - only you can take that ultimate step of letting it actually happen. The length of time that may take is different for each of us and I wish you all the very best on your journey xx
I went through all sort of emotions when first diagnosed (10 years ago) with E.T.
Anger, disbelief, denial, self pitying, frustration , a lot of "why me, I haven't done anything to get this illness" and finally a sort of acceptance.
I try to concentrate on what I can do and not what I can't. I do still have black days though and feel a little depressed but luckily these do not last long and I can go for several days without thinking about E.T at all!!
Like you, I do find it difficult to work out whether any health issues I have are E.T. related or part of getting older. I am 65 and do have other minor health problems plus everyday aches and twinges.
Sorry you still get migraines. I suffered with these from when I was in my 20's BUT I'm pleased to say that these have improved immensely since treatment for E.T.
This forum is brilliant for the support it provides and is a great place to let off steam and to find that you are not alone in feeling how you do.
Wishing you well
Judith
My husband gets those black days he blames his job!!
He said it's luke a heavy cloud over him.
He now tells himself to shape up he's lucky to have a diagnosis and there's people out there worse off than himself.
He definitely struggled with the cancer word you automatically think the worst.
He's a corporate manager in the oil and gas industry he's got a very demanding job the stress can't be good for him.
He had a HR meeting on Tuesday explained about the stress and his health issues!
The HR lady was very concerned as she wasn't aware of his pv and that he was on a chemotherapy tablet. So in all its vital that if you work your company know about this illness.
The have a duty of care and there's mcmillian advice out there for employers.
My husband said he wants to retire at 55 year old if he can!
Tracey
Hi BeckyM4, you're post caught my eye - I've not posted for ages. PV was classed by the WHO as a form of cancer (a neoplasm) a few years ago. I have had exactly the same questions as you (just turned 53) about whether the known symptoms are just part of getting older or are to do with PV. I suspect the answer is a bit of both. PV affects everyone in different ways with different severity of symtoms it seems. Also we're taking HU which is a cytotoxin and that must also affect how we feel. Having lived with PV now for 11 years I'm somewhat inured to having this condition, just now and again I feel troubled. I see a lovely, kind haematologist about evey 10 weeks. If ever I have any questions I alsways ask and she always answers as best she can. I hope that you can ask your Dr those questions that trouble you, and don't be afraid to do so.
I went to an MPD forum in London and it was fantastic; there were world leading experts there and during the breaks I was able to speak with a couple of them and ask a number of questions that had been bothering me so if you get the chance do try and go along. All best.
Hello BeckyM4, welcome to our forum. As you can see, we all understand how you are feeling and I hope the replies you have had to your post have given you some comfort and made you feel less alone. You can download any of our information booklets from our website mpdvoice.org.uk/treatments/..., or if you prefer I can send you some in the post, just email your full postal address to me at maz.cd@mpnvoice.org.uk. With regards to the definition of MPNs as blood cancers, as Dodders has said,in 2008 the World Health Organization (WHO) reclassified MPDs myeloproliferative disorders as MPNs myeloproliferative neoplasms, which are ET, PV and MF, neoplasm (new growth) is a term that has been used both for cancers (malignant neoplasms) and non-cancerous tumours (benign neoplasms) and because MPNs are characterised by uncontrolled cell growth most haematologists and cancer organizations do classify them as blood cancers, but you must remember that whatever we call MPNs the symptoms and prognosis can vary widely. It is also very rare for ET and PV to develop into MF (myelofibrosis) or acute myeloid leukaemia. I would advise you to read as much as you can on our website mpdvoice.org.uk/. Also, if you feel that having a buddy to talk to will help please email and I can send you all the information you need. I hope this helps. Best wishes, Maz
Hi Becky,
Sorry you are in a bad way at the minute. Being diagnosed with a chronic illness takes its toll on us emotionally as much as physically but you have to find ways to carry on. It is a shock to hear that PV and ET are classed as cancers but I try not to pay much attention to that label and I don't use it if I am ever asked about my illness. I just say it is a blood disorder or condition. We have all known people who have fought other forms of cancer. I have a good friend who died of breast cancer a number of years ago and what I live with is nothing in comparison to her battle.
There may be no cure for these illnesses at the minute, but they are illnesses we can live with and I think we owe it ourselves to keep on living and doing the things we love. Try not to dwell on this illness. I spent a lot of time on Google a couple of years ago googling a couple of illnesses I had been diagnosed with. It sucked all the joy out of my existence, made me anxious and very scared and also a bit of a bore to be around! What you see on the internet a lot of the time is worst case scenario and there can be a lot of drama about. The thing is, most of us can get on with our day to day lives and we learn to accommodate for certain symptoms or side effects of treatments.
What is your medication for migraines? I was tried on Topamax a couple of years ago and lasted two days on it! The preventative medication for migraines can be quite tough. I was like a zombie and ended up having to take time of work to recover from the side effects of the drugs I had been prescribed. I decided I would rather endure the migraines. The bizarre thing is when I started treatment for Raynaud's my migraines disappeared!
I hope you start to feel more positive about your situation soon. I found going to a patient support group for Lupus (one of my other illnesses) helped me put things in perspective and feel more positive.
Best wishes.
Hi Beckym4 -- I have nothing new too add to the lovely messages already sent. What a great group on this forum.
I have ET, and I'm 71. I have had a lot of fatigue recently, and have been v fortunate in that my regular GP Dr discovered that is was my thyroid that was the problem not my ET, and so now with some pills for that I have more energy. I had actually not told my hematologist out of worry he'd find something else wrong with me!
It is hard remaining positive, I find that my worst time is first thing when I wake lying there feeling almost in a panic about what I have. At the moment what helps me is a walk, I'm out the door before my husband is up, it somehow calms me. If the weather is bad (just about to get snow here) then a good book that I can lose myelf in helps to start my day.
Hi Becky , i have seen all the other answers so i wont say much , I have had Et evolving PV for since 1987 qnd am now 70 , I am on hydroxy carbamide aboit 1000mg a day and a baby Aspirin , With you what I dont like the sound of is the high does of aspirin you are taking , it can be rough on the lining of the stomach.
I would ask your haem why so high,
all the best Town crier
Cancer or no cancer I think is important : how you feel , what you can do or not, etc .
I hope to hear further good things about you .
Just a side note: That much aspirin can play hob with your stomach. Experience speaks. If you don't already have a gastro-enterologist, you soon may.
Thanks for the concern! I had an ulcer before-that is what led to testing that found the PV. I take Protonix daily to protect my stomach. So far, no new issues!
Hi Becky, I am new to this forum also, diag with ET. I find it interesting that the same medicine is used for all three, ET, PV and MF. I had cancer three years ago not this kind of cancer as people speak of, but the kind that can spread and take your life fast if not taken out or killed with radiation or chemo. So I do know what that kind of cancer is like and I went through the rough times and the surgery and I go every 6 months to get checked and wait to hear the words NED. Now as with that kind of cancer and this kind every little thing that happens points people to a fear of what if, however It is my understanding listening to some of the expert MPN Dr's that this for many years was called a rare Blood Disorder and then the MPN experts fought to get it recognized by the cancer institute as a blood cancer, but trust me when I say this it is different. Now what that means for us I'm told is more research, more money and new meds on the horizon. I know this is different because when I had cancer it was fast and furious not wait and watch or go home take a pill and you can mostly live a normal life. Yes it can progress I'm sure into other things as many people on here will tell you, but I have never heard one Doctor hear in the USA refer to it as a form of leukemia what I have heard is long term on the medicine they fear can lead to leukemia but that is a very small amount of people. So that's a new one for me.
Yes I all the fears and probably still do, probably more so then when I had cancer three years only because what I heard three ago we can give you a possible cure with this and this, I'm hearing there is no cure and you have to stay on chemo meds for life, but I am finding out there are alternatives to the chemo medicine and new medicine on the horizon so I am hopeful. I think the Chemo med bothers more then the disease itself because we all know that chemo kills good cells also and anybody who has had cancer before they get this is always trying to keep there immune system up. So stay hopeful the wonderful people on this site are Fabulous and have been a life savor to me!!!
Dr. Mesa has a video on YouTube "Ask the Experts" -Polycythemia Vera. In it, he says that MPN's are a form of Leukemia.
I hadn't had any issues with the hydroxyurea until this summer. I can't even say for sure that that is where the problem lies-my hematologist thinks it's the culprit.
That's interesting, I don't know much about PV I think that is where the red cells are high?. I'm really not sure about any of this, other then all I know is the risk factors are stroke or heart attack with ET, it does not spread like regular out of control cancer cells and some people have it for years without no meds just aspirin. That is scary but I will tell you something funny my Hemo Dr said to me its a shame you don't CML that is a form of leukemia because they have a cure for it! All I know is there are people who platelets are higher then mine who are taking no meds just aspirin and have had it for years, then they are some who have to take the meds but I think is the clotting factor they worry about. I'm not sure you will great advice on here, I am no medical expert at all, I'm just learning myself and I think so are most of the Drs. LOL.
HI
My husband was diagnosed with pv jak2 positive 2 years ago. We were told it's a primary cancer if not manage it can turn to lukeamenia.
So we thought least it's getting manage and it's a rare blood disorder.
Only in September this year we found out it was a malignant blood cancer, but it's non invasive and won't spread!!!
Honestly we were both so shocked!
But to be honest my husband started hydroxy 2 weeks ago he feels great no tiredness no fuzzy headaches. He said he feels normal and doesn't feel luke he has an illness.
He was having monthly venesections which was draining his iron.
We also found out from this forum that pv and ET are covered under the critical illness cover.
I rang our insurance 2 mths after diagnosis and was told it wasn't Covered so after reading on here. I tried again this September it took 6 weeks for them to pay out.
My husband has got an exempetion card so hedonist pay for perscriptions we also found this out on here.
The people in this group are brilliant without their help we wouldn't of had any guidance!!
Please try not to worry as long as you are getting managed by your consultant you will live a normal life. We read some horrible things that frightened us.
My husband is 43 now seems so cruel to get something like this at a young age, but we are so positive now as we think at least it can be managed and not like other cancers that can be fatal.
Take care of yourself you will find all your answers on here.
Tracer
Welcome hun yiu couldn't be in better place for information and support I hope over time things will get easier especially with the support you get here love and hugs x
Hi Becky,
while I was diagnosed with ET when I was 27ish I was in general asymptomatic. Over the years (I'm now 41) I've experienced two significant thrombotic esisodes and since the second one (Oct 2014) I am like an old lady with my fatigue. I'm also breathless, have pains in my bones and occasionally have night sweats. Just my own opinion but I wonder if, as we get older, do our symptoms become progressively worse? (I think women and our hormonal changes?!?)
You're never over-reacting - if you are experiencing something, no one can / should tell you its an over-reaction. Try and get some exercise, but plenty of rest and lots of fluids. Also, on the GP thing - I think MPNs are still quite mysterious - my GP hates to see me in her surgery (and that's not helpful for my confidence or my feeling of isolation).
HU has lots of side effects but so do MPN - I'm not sure how to identify one from the other, but by listening to your body and maybe keeping a 'symptom diary' you might identify days / times that are worse than others. I take HU three times weekly and know about it the days after taking it. Maybe your Sat / Suns are worse as you're on a higher dose on those days? Just an idea.
Keep positive :0)
Hi Becky just saw your post, I feel you! my family thinks since I struggle to get through the days I'm ok. I have asked that question over and over again is it cancer! I never get a straight answer yes or no. Even the experts disagree. OK here is what I do know it is I'm told from an MPN expert a change in your DNA that causes your bone marrow to be over productive on something! which puts great stress on your bone marrow. Some say its called a neoplasm I don't think they really know, but I have never heard yet it is a form of leukemia! I work for a large insurance company in the medical department and we have many top medical directors (Dr's) and lots of medical policy research. It was just a short while ago that the cancer organization recognized this as one of there blood cancers which is Great for us because of lack of research before that happened! It is placed on the leukemia org because it is part of the blood (bone marrow). None of the Dr's I have gone to or have referred to it as a form of leukemia. I just think now they are researching and researching more and I think more people are finding out they have these MPN's.
What the risk of ET or PV, stroke, heart attack, not the cancer attacking every cell in your body and we all know when cancers cells spreads its deadly and fast. So stop worrying about what it is, focus more on keeping your symptoms and your counts down, ask a lot of question do a lot research and see at least once an MPN expert. they are ones that are making the progress in this disease. Mickey
I just saw a comment that Dr,Messa say MPN's it is form of leukemia, that's interesting, but I think "a form of" does not associate it with leukemia, I for one am very thankful that the cancer organization has recognized it because that means research better medications and maybe a cure! I do know unless you cml leukemia which I heard there is a cure now for that, any other leukemia does not sit and wait. Its just amazing to me how much these experts disagree on things. I think when you get it in your mind you have cancer its a shock, I am cancer survivor the kind that kills you very quickly if you don't treat or take out, that's to me is very different then this, totally different.
I believe there is a psychological adjustment period and hope to get thru it quickly. Frustrated in not knowing what is Et related side effects and what is the hydrea.
I don't know if you have made progress in your search for a Dr.
I was recently diagnosed with Primary Myelofibrosis.
I immediately looked for a second opinion, and found Dr. Brady Stein who specializes, and is doing research. Look up his name on the web. I have had one appointment to go over results, and was very comforted that I am now with a young Dr. who cares.
Best of luck to you.
I had bowel cancer 5 years ago and thought i had gotten over this but my bloods kept creeping up 2 years ago my doctor( who i think is amazing by the way ). But not one word accept a letter to say that on the level of importance (more or less) i was still on the waiting list !!!!!!! Then i got s really bad bout of rhumatoid athritis and couldnt walk so they rushed me through for zn appointment with the hematologist and he said dont be alarmed i dont have cancer started vsections and went back 2 weeks later to be told i do have cancer and it would gurn into myelofibrosis and he said he realised that i did have an appt 2 years ago but their was a problem with the booking office. Anyway i went back to my gp and told her what he said and she said yes but she knows people that have lived a great life with this disease. What ive been doing is also seeing a naturopath to help stregthen and support my system and i feel great
Hope this helps all i do is read these sites from beatiful like minded people that are willing to share their stories so we can see what may haapen to us . Its amazing xxx
Hope this helps. anytime also dont stress i was crazy with worry as welll
Tracey
Becky...no one should make you feel like that. We are all cut different and this disease affects everyone differently....kind of like Covid symptoms were different for many people. You would do well to have a few consults with a second doctor. Sometimes the bedside manner of one can be off putting and yet another doctor gives you a whole different slant. Take the plunge, get a second opinion. Cheers and best wishes.
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