Hi I'm new to the site, diagnosed with ET JAK2 few days ago. Haematology want me to start taking Hydroxy. Refused at present, having Marrow Biopsy soon.
Very worried about side effects of drug and dreading Biopsy.
Would welcome any advice I've just turned 66, feel as if I have been given a life sentence. Very shocked lady!
Thanks for taking the time to read this.
Regards to All you Brave Folk.
Hello and welcome Pontygirl. I’m not a lot of help I’m afraid as I’ve not yet started Hydroxy but I think it’s only a matter of months away... It’s only natural to be scared, I am and I’m sure many on this forum have felt the same way. But take comfort in that you’re part of a great, supportive and very knowledgeable group of people who are also very kind! Ask away and share your worries because the old saying is true!
Take care
Jaynie x
hi Pontygirl, I was diagnosed with the same condition as you in December, in January i was made redundant after 52 years at the same company, my first reaction was thats it I might as well curl up in a corner and wait for whatever because I have no purpose anymore . How wrong was I, my wife and I reversed roles , she went back to full time work and started looking after our 18month old grandson so his mum can work, tell you what my life is so much better, he and I have a great time every day. As for treatment the BMB was really not bad and over in twenty mins and I have been on Hydroxy for 3 months now with no side effects whatsoever . Please don't worry you have a lot of good living in front of you x
Hi Pontygirl,
I am a 59 yo female and was diagnosed last month with ET; started 500 mg hydroxyurea 2 weeks ago today without any side effects. Like you I was nervous to start; it actually took me 2 days to start it from when I received the medication. I went to the Dr's today and my platelet count went from 980K to 755K and had not dropped that low in 4 months since my blood work showed the increase. I have been on aspirin since heart attack in November that started the process of testing for ET without a reduction in platelets. So, HU is doing the job it was meant to do
I have not had a BMB since the Dr said I was JAK2 positive and that is all he needed to make my diagnosis.
I takes a little bit to let the diagnosis sink in and do the research and understand it is not a life sentence but if you eat well, exercise and follow Dr. recommendations life expectancy can be normal.
Best to you,
mbr8076 - Just reading these posts and came across yours and was struck by how similar your experience is to mine. I too am a 59 year old female that just started taking 500 mg of hydroxyurea because I was just diagnosed with ET Jak2 positive. I too started taking aspirin in November because of a heart condition. While not a heart attack, my cardiologist said it was the closest thing and I ended up having 2 stents put in. Like you, I even let my presciption sit a couple of days because I was so afraid to put this med in my body. Your experience was so similar to mine, I rechecked the name to be sure I didn’t write it. lol.
That makes three of us girls! I keep procrastinating i. e. to go to the dentist, to have another blood test, to start exercising, etc. I even plan to call my doctor for one last time in the hope he might tell me what I want to hear!! The thing is that my blood counts have not changed for years now. The only thing that changed is my age and this for sure is what made my doctor prescribe the drug on top of aspirin.
Hello welcome to this site and a new group of friends to assist! You will find many of us here that have been on treatment for many years and so will be of encouragement to you. I have been treated with HU for ET for 11 years most of the time on quite high doses and it's been fine, most of those years I continued to work full time too. There can be some side effects initially but they tend to subside or go (or you don't get them at all) once the body adjusts and you learn how to manage things. I always say to anyone starting treatment remember it's the disease that's the enemy, the treatment is our friend, HU is for many a well tolerated drug and it is really effective in keeping us safe and sound so like a friend working away to keep the effects of our MPN at bay. So don't be over concerned you will be fine and do get help for your MPN far better that than what can happen if we are left untreated. All the best
Hi pontygirl, I think it’s normal to feel how we are 
I’m beginning to realsise that ‘shock’ is an emotion we don’t often genuinely feel and it’s one that takes us out of our comfort zone and we’re not in control! I was diagnosed just a few weeks ago and at 37 yrs old I too have wondered what that really means for me, but like others have advised I have been doing lots of research and it’s not all doom and gloom. It’s made me think about how I want to use my time more effectively. Xxxx
Hi, I know it's scary at first but you'll find evidence on here that many people take Hydroxy with no problems, some for many years. Best wishes, Frances.
Hello, I was diagnosed in January with JAK2 and high platelets. I, too, refused to take the hydroxycarbamide at first. However, when I went back to see the haematologist after a fortnight my platelets had gone up a further 200,000 from just over a million. So I felt I had no alternative as I was a real candidate for a heart attack or a stroke.
Anyway I took the meds and sat there waiting for the side effects which luckily never came. Now after two months my platelets have come down to just over 600,000. I take 500mg everyday and 1000mg on Saturday and Sunday, also allopurinol, clopidogrel and amlodopine.
I hate taking all this medication but I’m coming to terms with it and feeling quite positive.
Good luck!
Hi Juliet46
How nice to know I'm not alone in refusing to take Hydroxycarbamide. It's most definitely a shock to say the least, but like you I am already considering taking it. After reading so many helpful replies I now realise I don't really have an alternative.
I understand how you feel about taking so much medication but if we do not, the risk factor is too great. My attitude is changing fast due to the wealth of advice and knowledge on here. I am very grateful to all that have responded, and learning about ET. I am doing as much research as possible and I intend to be well armed with questions when I have the BMB..
Very happy that you are responding and getting to grips with this.
Good to hear from you quite inspiring and uplifting to know someone else said No. The Haematologist looked at me as if I had taken leave of my senses!
I will follow any posts you make with interest.
Kindest Regards
Mary
Hi Juliet
Just over a month since I first posted and you so kindly contacted me. I read all posts daily and today you came to mind.
How are you doing ? are you still not suffering side effects of Hydroxycarbamide if No Congtatulations, I'm hoping when I'm started to follow you with zero effects.
Take Care of Yourself
Kindest Regards
Mary
Hello Mary I’m doing ok, thankyou for asking ! My haemo has increased the hydroxycarbamide to 1000mg on three days and still 500mg on the other four days, this is to try and get the platelet count down more quickly. I feel ok apart from getting tired. There is an MPN specialist who comes to our hospital every three months so I have asked to see him for a second opinion, not that I think there’s anything wrong with the treatment I’m already getting. I hope you are ok
Kind Regards Juliet
Good morning Juliet
Thank you for getting back to me, good to hear you are doing well with the drug therapy. I'm guessing that the fatigue is a case of adjusting life to accommodate it. Almost everyone on here seems to suffer it.
I have tiredness constantly at present as my Iron is very low and until we get answers I'm not being treated for it. So I should be well prepared for when I start Hydroxycarbamide.
I have the same thought as you regarding seeing an MPN specialist. Maz kindly gave me details of my nearest in Bath. Like you I cannot complain about the treatment I'm receiving in fact my Haemotologist is excellent and very kind with the " human touch"
After spending all my working life nursing in the hospital environment, not all doctors are approachable.
I will tell her I'm going to Bath, prefer to be honest.
Always good to get another opinion.
Juliet as said I read the posts and spotted a reply from you regarding the merit of being in Beautiful Cyprus. You lived there 10 years ago. It's my favourite place and we try to spend at least 6 weeks there most years. We had to skip a few years as we had our eldest daughter living in Turkey so we spent long holidays there.
But nothing ever quite compares with Cyprus. My husband is Retired Forces. We intend to rent a villa for 6 weeks September onwards by then I'm assuming I will be on Hydroxy so if I should be suffering itching I will be in the right place!
We have stayed both sides of the Island but Paphos area is my favourite. We love to take a boat out from Latchi.
We intended to retire there but a baby grandson came along and it makes you think twice. Now my ET but I must say the Healthcare on Cyprus is excellent. Yes we pay but what you get is excellent. It never ceases to surprise me that you enter a clinic to see a doctor and behind every door is a Consultant! My husband waits until we are in Paphos to see ENT Consultant for check up, and what you pay, is worth it.
We didn't get a posting to Cyprus sadly but hubby's brother was posted there and our youngest daughter lived in Paphos 2 years. Like you I wish I was there now.
To see that Blue sky every morning and to feel that gentle warmth around you and nothing compares to swimming in the sea and not freezing when you get out. Having said that always nice to get back into your own bed on returning home. If I could I would pack my own pillows, I often take a pillow to hotels within UK.
Well Juliet I've gone off piste there but nice to think about better times. Always nice to hear from you.
Have a nice day
Mary
What you feel right now is what we all felt once we got the diagnosis. It's an awful feeling. But it gets better.
You must arm yourself with as much knowledge as possible; your doctors are hard-pressed as it is. Come to clinic informed, and ask questions. Keep a record of your blood tests to see how you are progressing. I am afraid that a lot of websites will scare the bejesus out of you, so treat them with a pinch of salt.
Look at it this way: what you have now, freshly and precisely diagnosed, is what people have had since the dawn of time. But before recent discoveries, this was seen as simply 'getting old'. Fifty, twenty years ago, you might not have survived a stroke or a pulmonary thrombosis caused by a blood clot. Now, you will, though medication. There is a huge amount of research going on now; some of the decisions made up to only two years ago are being re-evaluated - and for that we should be grateful.
I went on to Hydroxy a few years back. Felt a bit weird to start with. Then it settled down. Don't be afraid of that, and view your biopsy as a chance to learn more: it means a more precise definition of your MPN. Good luck, welcome to the forum and keep talking!
Hi, welcome. I to am a retired nurse, and your right we do make bad patients. I'm 75 now and was diagnosed six months ago, quite out of the blue after a blood test for something else not connected. I felt as though someone had hit me over the head with something very heavy !! I got the results of blood tests and BMB, (which don't worry about it is not that painful) My haemo said he was starting me on hydroxy, didn't give me a choice, although I could have said no, but I was so shocked. I knew nothing about the drug. Anyway the only side effect for me is the fatigue, I just push through it and carry on with my life, I have two great-grandchildren how keep me busy sometimes.
I'm getting used to the diagnosis and medication, it takes time, just keep a positive attitude, and keep in touch with us all on the forum, you will soon come to realise that you can lead a normal life
the support on here is fantastic, it has got me to where I am now.
Good Luck x
Hello pontygirl
Ditto to all your other posts - I am ET JAK2+ and found this wonderful forum when I started on hydroxy and was having a panic about starting it!
It does take time to get your head round it all, but you will get to grips with it.
I have learned more from this forum and MPN voice than anything from my GP or the hospital and am now so much more confident + able to just get on with my life.
I really didn’t want to start hydroxy, but there is no doubt it does the job and I have no concerns now about taking it (for me it took 8 months + my platelets are now near normal)
You will find most on this forum know more about their condition than the doctors - it has certainly helped me, and I wish you all the best going forward.
Anne-Marie x
Hi Pontygirl,
I was recently diagnosed with ET Jak+ and may also have PV as red indices are rising. Seems I have had this for at least 6 yrs and possible as long as 14 yr since that is when my platelets began a slow but steady march upward now just below 600. I am 68.
I am 68 and had a BMB about 2 weeks ago and get my results on Monday.
I hope the BMB can differentiate between ET and PV.
The BMB was a breeze as far as I was concerned, not pain whatsoever, a little pressure is all that I felt. I did tell the Dr to be sure to give the local anesthetic time to work. I did take 25mg of benadryl about 25 minutes before the procedure I think it helped some.
So please don't worry about the BMB and from everything I have learned about ET from reading and from my hematologist you can live a long time with this disease and new treatments are supposedly in the pipeline. So just do what your Dr says, let them do the work and go about living your life as you would otherwise.
Hi, I am 68 also and around 650 platelets. Had BMB and possible PV. Will be following you as we have things in common.
Hello Pontygirl (is the "Ponty" Pontypridd by any chance? I'm from South Wales.)
That's by the way. I have PV, diagnosed over 3 years ago. I have been on HU for 18 months with no side effects. My mum had a stroke in her 80s, and I am a volunteer with stroke patients of all ages. My PV was discovered by chance, following a routine blood test and I am so grateful that it was. If not, the first thing I might have known about it might have been a stroke, heart attack etc. Now the drug keeps my blood under control and I am checked regularly. You are bound to be anxious to start with, but keep in touch with this site and ask as many questions as you need to. We're all here to help whenever we can.
Kind regards
Sandra
Hi Pontygirl, hope by now with all these encouraging replies, you are feeling much more upbeat and confident. Have also heard of so many on Hydroxy, who have had hardly any side effects and sometimes, none at all. I didn't get on with it, but then I never respond well to any sort of drugs, but in touch with a lady, whose husband has taken it for well over 20 years and is fine with it. Also, I actually refused a BMB, as, having chatted with the haematologist, she explained it really shows them what is going on, but 'isn't necessary'. No way would I rock the boat, but would say...follow your instincts and read all these helpful words on this brilliant Forum and do more research and don't feel hassled or hurried to make decisions. By the way, have had ET Jak 2 + for 5 years and most of the time, completely forget have got it...sure you will be the same.....but can absolutely remember the shock when first diagnosed and this Forum helped so very, very much. Very warmest and best wishes, Tinkerbell
Hi Tinkerbell
Thank you for some excellent advice. You have not rocked the boat, but you have got me thinking in depth the validity of BMB. I accepted that proposal without question, Hydroxy was a definite No at the time.
I now realise I have to give it or similar a go! However I have so many more questions to ask. And I will be taking a little more time to commit to anything.
At the time of diagnosis I was in shock but knew I wasn't jumping onto Hydroxy. Haematology have a reasonably valid need to do BMB as I'm losing Iron??
But you have got me thinking about this, many on here did not have BMB diagnosis made on ET JAK2 so ??????
You are a great example of living with ET, I so hope I can do the same.
Best Wishes to You & Happy Easter.
Mary
Hi again Mary,
Been reading through all the correspondence and you have been given some good and sound and kind advice and you have the most lovely manners, replying to each and every one! May you be given wisdom (and patience and persistence!) to find out as much as you possibly can, from as many sources as you can.
Always am conscious that what may be right for one, is not necessarily right for another.
I put myself on good Turmeric capsules, and have felt better and better, though platelets not responded quite yet! Another friend is sure her platelets have been successfully lowered by taking pure pomegranate juice (better not to have anything with added sugar), so that might be worth trying for you, as well.
Relieved you don't feel I have rocked the boat, as all we on this Forum want to do is to help and encourage and try to take away people's fears and worries, if at all possible.
Maz, who runs it all, is Fabulous, by the way!
As long as not a nuisance, would really like to keep in touch to hear how you get on. Very, very warmest wishes, Tinkerbell
Hi Tinkerbell
How nice to hear from you again, that would be really nice to keep in touch. I will be looking forward to see you are responding to your therapy.
Funnily enough I purchased Ground Turmeric couple days ago. I intend to make a Turmeric Milk with any type of milk. I will now buy some capsules gives me options.
Pomegranate Juice sounds a good idea to me.
We spent 6 weeks in Yalikavac Turkey, not too commercial just a lovely town on the coast. We rented a villa the garden was full of fruit trees including Pomegranates. I used to juice Pomegranates besides Oranges. And to just pick peaches and fabulous lemons was wonderful. The locals are very healthy and they drink Pomegranate regularly.
I made fresh lemonade daily and hated leaving it all ☹️.
We sadly don't have the climate for such things. However nice a place is, there is nowhere like home!
We have a lot to learn regarding the benefits of herbs and fresh fruit and food. I cook good food but sadly today there is Fast Food Culture.
In Yalli it was an every day occurrence to see children asking politely if they could pick a piece of fruit as they passed by to and fro school.
So I will be buying Pomegranate Juice Unsweetened.
Regards the boat which is stable, I have raised questions today primarily BMB necessity.
Also I will not be rushing into decisions without taking time to think and digest.
I have another issue to be considered. Quite suddenly my Renal Function has also dropped. Which was not taken into consideration by Haematology. To be fair they are in the Blood Buisness and I didn't raise the issue at time of diagnosis. But it was there at back of my mind, simply too shocked by diagnosis.
I have now raised it with my GP and he has referred me to Renal Consultant to take advice on Hydroxycarbamide and Renal Implication. So that will slow the decision on taking Hydroxy. My Platelets were 852 on test 4 weeks ago. Just waiting for results from sample taken last Monday. I will chase the Haematology Nurse for that.
Next intended contact is BMB
is 3rd April. That is of course dependant on absolute necessity of BMB.
As said boat stable not sinking but passenger wants definitive answers 😬
That's brought it up to date with me.
I hope you are doing well and as said I'm grateful for all the advice and encouragement.
I cannot thank the good folk on this site enough.
I'm sure Maz is lovely I can see she runs this very well.
As suggested I have increased my water intake, beneficial for both issues at hand.
My Very Best Wishes to You.
Mary.
Hi Mary, reading through all you have written, you sound to be so wise and doing everything possible for your health and wellbeing...and extremely thankful the boat is firmly afloat and no question of any sinking!
Sounded like the most superb diet in Turkey - wish it was yours every single day, but you obviously eat well and great you are taking the Turmeric and increasing your water intake, especially.
May you be given wisdom to know what to do re the BMB. Think everyone has to make their own decision about this one.
Hope the Renal Consultant can sort things out for you, and only sorry you have to cope with this on top of everything else. (My GP, after a few weeks, stopped me taking Hydroxy, because I reacted so badly, but again must say that most people do seem fine with it.)
Really glad you found this site and know I along with everyone else on this Forum, would always want to be there for you, supporting and encouraging you.
Thank you for keeping me/us posted and again, every good wish to you. Tinkerbell
Hi Tinkerbell
How are you feeling any news on ET front. I'm taking the Turmeric and Pomegranite Juice, how about you. Any improvement for you? Well I am slowly getting there, so much going on at present Renal Consultant waiting to see how I react on Hydroxycarbamide if and when.
Went for BMB on 3rd April and I agreed that it seemed to be an advantage to have done for future reference. Procedure not nice at all, when she eventually got into my Bone which is very solid, my Haematologist could not get a good sample very disappointing for both of us.
New date set for 25 April, worse this time as I knew what was coming. Had it done and I have to say my Haematologist was fantastic and assured me if I said stop she would immediately. Got a good sample but I felt wet on my back and she confirmed it was blood. She dressed the wound with a pressure bandage, had to stay there 30 mins until she was sure I was not bleeding.
Late afternoon I was in a lot of pain but similar to the previous BMB. By 7pm I started to feel as if a great weight had been attached to my hip. Took a look in mirror and knew immediately I had a huge swelling. A large Haematoma was developing.
I ended up in a Haematology Unit in Bristol that night and put on drugs to get the approx half litre of blood that had seeped from the capillaries to be absorbed. Left Bristol for home 2 am and back in my local hospital at 10 am with my Haematologist. She was upset that this had happened to me, but we knew it was a risk of bleeding as I take Clopidagrel to thin the blood and to keep me safe from strokes it was not stopped for 12 days prior to BMB.
(In 2005 I had a TIA during a really bad migraine and I was abroad. I managed my Care myself for 3 days prior to flying home. Literally went straight to my hospital got scanned and confirmed I had indeed had 2 TIA's one that I didn't know about.)
Hence the Clopidagrel not being stopped prior to BMB. Never had another TIA but too risky to stop the drug just in case a migraine triggered a TIA.
So for now feeling a little low as cannot sit or lie in bed comfortable. The Haematoma is slowly going down but very painful.
So my friend I rocked my boat and didn't like the turmoil. It's done but I wouldn't be in a rush to do it again ☹️
I'm wondering if many others have had a Haematoma after BMB. I've seen it many times after surgery during my years nursing. I will add that my case is not the norm and if you really need to have a BMB done it would be foolish not to. If I have to have another one I wouldn't be enthusiastic but I would have it done.
Hope you are well and having a nice Sunday.
Very Best Wishes
Mary
Hi Mary, wow, what a traumatic time you have been through - really sorry to hear about it all and hope you are really beginning to heal at long last. No wonder your haematologist concerned all this happened. Yes, continuing with Turmeric and Pom Juice and (apart from silly virus, which laid me low for couple of weeks, plus some unrelated tooth problems) feel well.....and would still encourage anyone with ET to persevere. Note you take Clopidogrel and Turmeric is actually a blood thinner, so maybe you could give up the former? As you could be thinning your blood too much, which might also account for your post BNB problems? But am not medical, myself, and you are former nurse, so obviously you have to do the right thing for you.
Just listened to this and it makes brilliant sense. You would need to listen before 9.00 p.m. tonight, though, as finishes then. Know we don't have Lyme Disease, but absolutely relevant to all that we have going on in our bodies, with the MPNs.
naturalhealth365.com/free-show
Very best wishes, Tinkerbell
Wow Tinkerbell
I didn't realise that Turmeric is a blood thinner, something I have not used much in cooking but my daughter is really into all of it. And picked me up some extra strength from a Glastonbury Herbalist.
I had the usual from supermarket. Fortunately the capsules were really staining my fingers so I had stopped taking the caps. Only had 3 went back to making a Turmeric milk with just a small amount. But really good to know as my daughter was chasing me as to the capsules.
I will tell my Haematologist as she is so nice and was really sorry that she put me through it once to no avail.
I anticipated her distress and took her some nice flowers, it was just bad luck regards the Haematoma. I will tell her about the Turmeric but honestly the amount I have taken is small in comparison to what I have taken since 2005 in Clopidagrel. It has a wash out of the system between 12/14 days.
But I'm very grateful to you as it is one or the other for sure. I will be listening to this interesting topic shortly Lyme Disease is also another strange one. Sorry to hear you have had health issues, hope too are feeling better. Spring was late this year who knows maybe we will have a nice summer a little bit of sunshine makes a difference.
I agree with you one has to be persistent with this illness that we have. There is far worse out there, and when you see children all over the world suffering all sorts, it puts it into perspective!
So nice to talk again Take Care, Keep Well.
Mary
Someone tipped me off re Turmeric being a blood thinner, but think probably very small effect, when we just take capsules, but worth checking with your haematologist. Hope he/she happy - as sure better if we are able to make more 'natural' stuff! You sound such a lovely person....really so wishing you Well. Best regards, Tinkerbell. And so agree with your last comments - re keeping things in perspective and so many out there suffering, especially children.
Very interesting so glad you told me about it and so true regarding the similarities in these illnesses. Very true about oral hygiene, the foods we eat. I don't eat processed foods if at all possible. I believe our ancestors ate differently to us. Foods were so much more natural, I often wonder what is put in milk that makes it last 7/8 days? Our environment has changed hugely, I played outdoors today children want to watch tv, mobiles or computers. I raised my children on good home cooking vegetables, meat, and a variety of foods. I had a baking day and stocked up the larder and cake tin. Fresh fruit and to have fizzy drinks was a treat. I see it in my family young people who only drink fizzy drinks, water is outrageous. I taught all 4 how to create a garden and maintain it. Both my daughters are keen gardeners and my eldest grows beautiful vegetables and salad stuff. The sons know but seldom practice the art of gardening. But they support their families and give the grandchildren good lives. Not all changes have been for the better. Very interesting I intend to follow it.
I try to be nice to all people as it costs nothing to be kind. My grandmother raised me and she always taught me, "good manners cost nothing, and if you have nothing good to say, then say nothing at all".. I always knew I would be a nurse and that taught me many things about medicine and healing. It also showed me just how fragile us humans really are under our exterior. I have found that to be true many times, above all we are here for such a short time, why waste that time being unkind.
Talking of children suffering in various places. I had intended to give 4 weeks of my time to join one of the teams of Doctors Without Borders. Now that is a worthy cause, I donate cash but time is also so very much needed and to help these people is vital.
Kindest Thoughts To You Tinkerbell.
Take Care
Mary.
You sound incredibly wise and obviously done a brilliant job raising your children so healthily. The combination of nursing skills and such sound wisdom would make you an outstanding nurse. Hope you might be well enough to work with that extraordinary organisation abroad, I believe, started by a French doctor.
You are so right re need of fresh fruit and veg and no processed foods, and been told we should be having non pasteurised milk, interestingly enough, though never see that in shops. Guess you know about necessity of 'nil sugar' in our diets, as well. Though know many use 'sweeteners' (often, with aspartame, which is a real concern).
Do you know what caused your MPN and have you got it in your family? My mother had PV but when I was diagnosed with ET the doctors said it was irrelevant!!
Very kindest wishes to you and every blessing, Tinkerbell
Hello Timkerbell
Thank you very much, I tried to always be a good caring nurse never loseing sight of the humanity of it. My children I always did my best as we still do. We gave them the tools of life and hoped they used them wisely.
Medecins San Frontieres started it and yes he was French. Wonderful work and so rewarding for Doctors, Nurses,Physios all concearned. Time is the hardest and most precious part for the Professionals to give.
My ET no idea where it came from. They say it can just strike. Fortunately I don't take sugar and I avoid surgery foods. I don't use sweetener either.
We have a 7 year old grandson, he only drinks water from birth, apart from his baby milk.
When he started school aged 5 years he went to a children's birthday party! Somebody gave him a fizzy drink, he took a drink and announced to the whole room " Don't Drink It's Horrible". The mother of the house rushed over to him to see what he had. Promptly announced it's Lemonade. Our little man replied " it's not nice, may I have water please "
My daughter was told all about it on collecting him, she explained he had never had fizzy drinks.
He told us all about it and now he announces at Birthday parties before, he is water only. He now has a 1 year old brother who is being raised the same way.
They don't crave sugar, but I would have loved to have been a fly on the wall that first time.
Hope you have had a good day. Always nice to hear from you.
Kindest Regards
Mary
How splendid - your little grandson and hope his influence will spread far and wide! Our family the same, all great water drinkers. Often refer to myself as a 'water-holic'! Medecin sans Frontieres, have always been very keen on, but also find deeply daunting, reading what they face. Like you say, especially when it comes to children and in war zones.
You are so wise not to take any sugar, by the way. When in hospital, was sorry to see trolleys of sweets being offered to patients and also rather shocked to find 3/4 of them in a ward had diabetes, yet tucked into sweet things. You sounded an exemplary nurse.
Wonder if day will come and research done about MPNs to see if anything all share in common. Does seem to be a bit random.
Lovely to chat, better leave you in peace! Best regards, Tinkerbell
Hi Mary you are most welcome and I’m so glad you’re comforted by the responses on here. Take heart that many people on this forum manage very well on HU. Everyone is different but there’s no reason why you and I shouldn’t do well too. Stay positive and drink lots of water! 😊
As for the BMB I have to be honest and say I found it horrible but many on here had no problems. If I have to have another one I will insist on some form of sedation!
Best wishes and a virtual hug
Jaynie x
Hi Jaynie
You were my saviour that night I posted and your reply came at the right time that night just over a month ago .
Jainie I read posts daily and spotted a response from you to some other poor soul in crisis. I have a feeling you said you have not told your family, children etc??
Have you made that decision to tell them. I understand as I have 4 adult children and I'm in pretty much the same frame of mind apart from my eldest daughter who knows. My conscience is pricking at me as I'm now thinking she cannot share her worries with her 2 elder brothers and younger sister. She is temporarily staying with us so it was hard to hide it from her.
I now feel very selfish as she is carrying this burden alone.
You said it that first night " a problem shared" ...
How are you doing, have you started Hydroxy or ??
I've had BMB done x2 as first was not a good sample, but I agree with your opinion of it.
I will do a post on this subject tomorrow, just thinking about your situation and decisions upon telling our children.
I hope you are keeping as well as possible I will be interested to hear how things are with you and the big decision to tell or not to tell. Really hard and once it's out there ? I don't want family looking at me and wondering all sorts, but I also know my daughter that does know needs support of her siblings.
Let me know how you are doing all round.
Very Best Wishes to you
Mary xx
Hi Mary
Good to hear from you! I’m doing ok thanks, no HU as yet but that may change in June when I see a new consultant..
Hope the BMBs weren’t too bad and you’re doing ok too? I think the general consensus on here is correct - ie chaos and turmoil often follows a diagnosis but things generally settle down and become manageable once the shock has worn off! Hope you’re settling down Mary..?
As for the thorny question of who to tell.. my decision not to tell my sons or my siblings was borne of a desire not to burden them. Until very recently I was asymptomatic and didn’t feel it necessary to worry them - there was nothing they could do anyway. I look the same as I always have and they’d never guess unless they saw me fall up the stairs to bed at 8pm in an exhausted stupor... My partner knows and a few close friends and that’s it really.
I can understand why you’re concerned for your daughter. Perhaps you and she could talk it through, to see what she thinks? Then come to a decision together..?
I’m sure you’ll work it out. And don’t forget you can always offload here! 😊
Take good care
Jaynie x
Hello Jaynie
Good to hear from you, I understand your reasoning behind the not telling the family. Yes I would be in same position as you if it were not for my daughter being at home. You reminded me of myself falling up the stairs at 8pm. That makes me wonder what it will be like on Hydroxycarbamide as they all say about fatigue in extreme. We will find out soon enough sadly. My Haematologist is waiting until all the data is in then the big question To Take or Not To Take. There is no choice really so for me it's Take It and get on with it.
Ahhh BMBx2 you were correct it's not the most pleasant of things. First one my Haematologist found it really difficult to penetrate the Bone. Eventually she got in after some time, but couldn't get a good sample ouch😬
Three weeks later take 2, very painful but she got a good sample. I knew I was bleeding as I could feel it on my back, doc put a pressure dressing on and we waited. 30 mins later she was sure I had stopped bleeding. Got home 4.30 pm ish, early evening I was most uncomfortable and thought it was the same pain as last time. Early evening I investigated and realised I had a huge Haematoma developing. Ended up having to go to a big Haematology Unit in Bristol. Didn't get away until after 2am with lots of drugs to help absorb the blood, I felt as if I had and still have a brick attached to my hip. Can't sit or lie comfortably at present. Back with my own Haematologist next morning after Bristol night. She is so kind and professional I took her a nice bunch of flowers as I knew she would be feeling bad.
But it's just one of those things I have seen it happen many times over my years nursing. It has to be said I take Clopidagrel blood thinner so I was at risk from that. It's just going to take some time it's slowly dispersing . That was my experience of BMB but I must say if it's needed to be done, do get it done.
Well Jaynie I wish you well and thank you for good advice.
Take Care
Mary x
How is your hip Mary? I hope the discomfort of your BMB is now a distant memory!
Jaynie x
Hi Jaynie
Thank you so much for asking, it's 14 days today since being done. I'm more comfortable but have to take a seat carefully and speed bumps are a real pain literally. I think it's going to take another 2 weeks for bruising to be gone.
Ahh us ladies get all the joys of this and that. Mammogram today, but very important for us girls.
BMB too if needed, I was not the norm in that respect 😬 Get results on the 11th so I remain hopeful.
How are you ? hope you are doing ok, I suspect you and I may be starting Hydroxy similar time. As you said at my beginning, " maybe we can do well just like many on here", I hold on to that sentence of yours! Do let me know when you start, I will do the same.
Take Care Jaynie truly nice to hear from you. I personally feel it's a comfort to know that we may not be posting, but we are in the thoughts of others. The wonder of this site and all of us in the same boat. Not quite the Caribbean Cruise, but very comforting the warmth of strangers.
Good Thoughts are with you.
Mary xx
Hi Jaynie
How are you doing, hope it's good.
This is a silly question but I'm hoping you can assist me.
I'm trying to post a question and where it says Username I enter it, then once I have written what I need to say, it's telling me I'm trying to send a message to myself ☹️
How do I post on the Forum Jayne, I did that first and only post the rest have been replies.
Help needed by a nerd in a bit of a panic.
Thanks in advance
Love Mary x
Hi Mary I’ve just seen your other post so you’ve obviously worked it out for yourself 😊
I’m ok thanks, waiting to see new consultant on 5th June.
Enjoying this lovely weather and having a bit of a weep watching Harry and Meghan - what a fab wedding! Hope you’re ok Mary and getting the answers you need and the BMB is now a distant memory!
Jaynie x
Hi Jayne
I would never think you flippant, don't know why I couldn't work it out, mind had gone.
Yes I watched the wedding and I agree it was beautiful in many ways. They make a lovely couple and Harry deserves such happiness and babies to enrich his life. He has come a long way from that tragic 12 year old following his mum.
BMB just another huge shock yesterday but didn't realise until today when I asked questions on McMillon Cancer site, what it truly means.
I will reply to Paul oh here who is knowledgeable regarding MF
I intend to return to my Haematologist next week and ask the questions that I didn't yesterday. I just accepted that I have MF. I had not researched it I have concentrated on ET.
How foolish is that, I almost wish I had not had the BMB.
Anyway continue to enjoy the weekend and glorious sunshine, good luck with the new Consultant on the 5th June.
Take Care
Mary xx
Hi , I was 63 when diagnosed in September2017.
Try to see this in perspective.
This condition is manageable.
My team have showed me how taking hydroxy controls the over production of platelets.
It has a damping effect on the production.
Whilst your concerns are valid in this early stage of your journey, your team are the ones with the knowledge and experiences.
You are not alone ,we are here to offer support however medical decisions are made based on informed choices they offer.
Each one of us are unique and although we have various issues with blood production we can only share what happens to us in a general way.
For me it took six weeks and I too was thinking it was the end of normality.
Thankfully I found this web site and have a very good team.
I know see them every three months I am fit, going to the gym three times a week and a walk of 5ks once a week.I have been on two holidays and I as m fit for my age.
Wishing you well.
Hi Mary
It is a heck of a shock when first diagnosed. When I went for my first hospital appointment it was in the Oncology Department - I was so shocked I wet myself!!! However all subsequent appointments have been in Haematology. As for the BMB, I didn't find it painful as they gave me gas and air - however there was one part that wasn't very good - when the doctor asked a nurse for a longer "instrument" to get through the "padding" on my hip !!!
I was on aspirin at first, then as predicted by the doctor, when I got to 60 my platelets jumped up and I was put on hydroxycarbamide. I was absolutely terrified, I thought I would at least grow another head, however I didn't! After being on it 3 years I developed ulcers on my feet so I was changed to Anagrelide and they cleared up. My platelets are currently in normal levels.
I must say I get far more trouble from my arthritis than the ET. It's easy for those of us who have been through the early stages and have been taking the drugs for some time to say don't worry because when first diagnosed that's about all you do! If you have any questions ask on here, someone will have an answer, no matter how silly you think it is. I was very concerned about whether I could still dye my hair - yes you can!
There are people on here who have had ET for many years and mostly hardly notice it. I was diagnosed in 2010. I try to eat healthily, and I know I don't drink enough water as I should, but apart from feeling tired (that could be age related) I don't get that much trouble from the ET.
Best wishes for the future
Lizzie x
Hi Lizzie
Thank you for your kind message much appreciated.
I can imagine your shock at entering an Oncology Unit, it is a department I had hoped not to attend. Hey ho at least we have these facilities at hand and we have excellent Haematology Departments all over the UK. We would really be in a fix without our healthcare system.
I truly understand your fear of Hydroxy as that was my first reaction. Down to people such as yourself I am now more comfortable with the idea.
Ulcers on your feet must have been very painful. Good to hear the new drug suits you and you are thriving.
Arthritis is always worse during winter, thankfully we are well on the way to better weather. I agree with you water is essential to drink as much as possible.
Take Care and Happy Easter.
Mary
Alot depends on age and risk factors. The magic age appears to be 60 thats when I understand you can become high risk.
I was diagnosed 4 years ago Et and Calr positive . My platelets are high now 1200..however I'm 54 and still .low risk.
I take nothing for granted but know I have to start on medication at some point. Ask lots if questions and listen to what others tell you. I have had 4 years to make a decision. It felt like a life sentence when first diagnosed. For some people it is.
Be kind to yourself .. take it easy and dont rush any decision. I saw my Dr yesterday and asked alot of questions. I know in the next year if my platelets have risen to 1500.. Then I will have to begin treatment.
I hope you get the answers you need. I haven't had a BMB...just diagnosed through blood tests.and see the haemotology dept every 3 months.
Good luck
I have ET diagnosed last September. Hydroxy is wonderful, regard it as your friend- considerably reduces risk of stroke and heart attack which could have dire consequences. Good luck! X
Hi
Thanks for the message, yes I have had a change of heart regards Hydroxy and realise I need to take it. As you say the consequences could absolutely be devastating to ourselves and family. It is what it is and I must deal with it. This site has given me the courage to proceed.
I wish you well on your journey!
Happy Easter
Mary xx
As many on this forum know I was diagnosed with ET 24 years ago and have since progressed to MF in the last five or so years. It is all very scary at first and when I was first diagnosed the internet was in its infancy so there was nowhere to turn for support. I was also bringing up four boys under the age of 12 at diagnosis. I guess I just didn’t have much time to worry and was spared the now too often present scare stories on the internet. I am now 68 and am only just finding that an MPN is really having an effect on my life. However there are others who have had ET longer than me with no progression
I think the trick is not to let it worry you to the extent that you stop enjoying your life. We are all so different in the course and progress of our MPN and our ability to cope with the stress of it.
You will find lots of support on this site and no question is too dumb to ask so fire away whenever you need to. You are welcome here even though none of us wishes to be here
Very best wishes, Jan x
Hello Jan
Thank you for the kind response, you are one brave lady. You obviously had to get on with life I have raised 4 children and I know what work goes into it.
I believe you are right in not letting it constantly into your mind. Today I have deliberately not given any thought or research until writing this. And today life felt normal for the first time in a week.
I have received a wealth of support and information that is astonishing. I'm so lucky to have found the good people on this forum.
Which brings me to your poetic words, " that we are all welcome even though none of us wish to be here". How right you are but the help I have received is amazing and I now cannot imagine dealing with ET without this site. How lucky are we that participate, sadly unlike your early years.
I wish you well and continued success with your MPN.
You must be an inspiration to many and you have given me hope of living in peace with this.
Best Wishes & Happy Easter
Mary x
I would like to add. I’m 51 dx with PV. 2 years a go I was in the same position. Research gave me control back. It’s not a death sentence. Lots of amazing research happening. The drugs aren’t as bad as they sound. Lots of people tolerate them well. I’m on pegasys.
Hi Eleanor
Thank you kindly for your advice and positivity, always good to hear.
You are quite right the more I research ET and read such inspirational stories on here I feel very different to just a week ago.
Also I have taken back control of the situation and that is wonderful to feel more in control.
I have ET JAK2, it doesn't have Me!!!
I'm learning fast about ET and lots of people on here have given me sound advice and encouragement for which I am extremely grateful.
Throughout my nursing career I have cared for many people but I never came across this first hand.
I am working my way through a book on the subject and agree there is good research taking place.
I will add no matter what research is done or what knowledge the individual has when diagnosed, it a a real reality check and terrifying!
It raises questions of our mortality and puts fear into our hearts. And that is very painful and frightening. If your lucky you find this forum as did I, and once you put it out there Help Arrives in all manner of ways.
I now fear for the patients who maybe do not have access to the Internet and there are many out there who do not. They sadly are missing out on so much to be had on this forum alone.
I will always be grateful especially to the first response I received. Nightime and feeling desperate I couldn't see a future with ET JAK2. That first message gave me comfort and reassurance at just the right time. Diagnosis Monday, took to my bed all day Tuesday to contemplate my situation. Wednesday decided I needed to start research and think of my husband who was also very worried, I had no intention of telling my 4 adult children. Then posted on here, my husband thought I should not have done so. He is very private and proud, we had a difference of opinion and I took a long shower to cry in private!! Retreated to my bedroom and there was that first message, timeing perfect and it gave me hope. My husband now gets it and understands my need for talking to others who have the same or similar.
Hence I now wonder about those that do not have this support.
I will be telling my 2 sons and 2 daughters in the near future, but not my beautiful young grandchildren.
Research is Essential but not as rewarding or comforting as sharing on here.
For you the treatment is going well and that is great to hear and encouraging.
Thank you & Happy Easter
Mary
Hi pontygirl
How nice to hear from you. I crossed the bridge the other way, being married to 2 Welshmen!
You will find great support on this site, as we all do, and the initial shock will pass,as you see these MPNs as chronic illnesses that just have to be kept under control with the right care and medication.
Ask anything you need to know. Someone here will probably have experienced the same problem.
Kind regards
Sandra
Since diagnosis my husband and I have been to Talin in Estona, Malta both three hour flights.
Preparation for this begins 48hours before. Keep well hydrated, no booze before the flight, have a stress free zone, if possible a foot massage and check the flight socks.
Early nights are a must and I try to do my 5km prior to the flight day say two days before.
I do not smoke so this is not an issue.
Sun block a must a good factor 50. As to the travel insurance I will get back on this .
Others on here are just as helpful.
Hope you have a better Easter.
Regards Annemarie.
Hello Pontygirl
So sorry to hear you are struggling with your diagnosis. Starting on medication is certainly a scary decision to be made.
I have a bachelor of nutritonal and dietetic medicine and specialise in the management of Jak2 conditions. I am currently running free initial consultations in the month of March and would love for you to join me in an online consultation where you can learn how you can treat your condition naturally.
Please let me know if you are interested in having a chat.
Thanks for the reply all advice is appreciated.
I am extremely fortunate in that I am a just retired nurse and have many medical books etc. Plus my closet friend is a hospital based dietician.
With assistance close by and the wonderful, positive kind people on this forum I have gained a wealth of knowledge and understanding from each and every one.
Thank you for the offer I am sure some may need assistance , but I am lucky to have help in this area should I need it.
Kindest Regards
Mary.
I was diagnosed in 2013. Never had bone marrow biopsy.
Hot and coldness ,burning tongue , but other than that it’s no big deal
Hi Pontygirl,
Thanks for checking. My Dr was ill on Monday so I won't get my results until This Thursday or Friday. Have you had your BMB yet?
I am trying to learn not to worry about the things we can't control, I think that helps.
Good luck with your BMB. Try not to worry about it, It will be fine.
Good luck on your BMB decision, whatever you decide it will be the right decision for you.
By the way, my hematologist (he is excellent) is Indian, maybe that is why he is working on Friday or just to make up for missing a week due to sickness.
Happy Easter to you as well!
Hello
I'm 50 and was diagnosed with ET Jak2(neg) in 2016. I've been on HU since the day of diagnosis. It's normal to feel anxious and worried and I was the same when I heard the word "chemo". However, you have not been given a "life sentence", more a "life extension". Those diagnosed with an MPN can live a relatively normal life and our life expectancy is no different to that of those without an MPN.
What are your platelet levels at the moment? I did not have a BMB as I was diagnosed via DNA through the blood.
As for side effects of HU, everyone reacts differently. I have side effects with paracetomol so I knew I would receive some! However, they were very minor and did not last long (6 weeks at the most). The worst side effect for me was the fatigue, but I could not say that was all down to ET or the chemo. It could be my age, the fact I'm in menopause and getting a few early nights would not go a miss!
Your levels will be checked by your Heamo on a regular basis, I see mine every 3 months now with full FBC's (Full blood count) twice in between appointments.
I understand your anxiety, but please try not to worry yourself too much (easier said than done I know). Taking HU, if anything, will keep you alive and prevent heart attacks and strokes. If I'm honest, I've never felt so well since I've been on HU in comparison to how I felt pre-diagnosis. The key is to remain active, maintain a healthy diet and keep hydrated.
Good luck with your BMB. I believe you can ask for sedation prior to the procedure.
Best wishes
Angela
Thanks, and best of luck to you on your BMB. Not to fear.
Hello again, Yes my haemo is also a really nice man but he knows I am going to see the specialist.
Yes I liked Cyprus we lived out there when my son was serving at the JSSU at Ayios Nikalaos near Famagusta. In fact we rented for a year and then bought a little villa. Unfortunately when the recession hit in 2008 we sold up. Worst decision of our lives 😟but hindsight is a wonderful thing . We lived in Konnos just outside Protaras and loved it. We are both ex forces as well.
Nice to chat to youabout something different with nice memories
Take care !
I just knew you were Forces my son was a Submarinor out now.
I love Protaras so far unspoilt been to Konnos. I understand what you are saying about a villa we almost bought in Penara just next to Protaras. Put it on hold by 2008 when prices went crazy in the wrong direction for you sadly. I had both parents ill in different places and I couldn't think straight. But we missed an opportunity for a bargain. And we had migrated over to Paphos especially when our younger daughter lived there so we were torn as to where. Prices are on the up and it's a possibility as I realise so much more nowadays that we must do what is best for us. This ET is the worry, Private Medicine could be hugely expensive. I preferred it prior to Cyprus entering the EU. Locals find it exspensive to live, we have friends both ends. I feel for you Juliet, I know I would be gutted if we had sold up, but as you say hindsight is a wonderful thing. And no good looking back especially for us , we need to move forward. I have 2 of each children only the eldest went into the Navy. Hubby was 7RHA with wings! Yes the magic of Cyprus we will rent a villa along that stretch Paralimni etc, better beaches that side. Fig Tree Bay my friend in Leftkara is a fellow nurse and it will be good to see her. 2 month rental is always cheaper. You will think I'm nuts but I love to see the perfect green grass in our bases rugby pitches etc, etc. Ladies Beach all happy days ,happy memories .
Take Care
Mary
Hello Mary, My son was a submariner too , then retrained as a C T, served 22 years with the RN then joined the RNZN for 5 years now working for the Government in New Zealand. We were supposed to be going to NZ in February but was diagnosed with this in January so cancelled our trip. Again with hindsight probably would have been ok to go but will maybe go another time .
Are you on Facebook?
Oh Juliet
What a shame Regards NZ, but I understand when I was diagnosed 6 weeks ago I thought I wouldn't be going anywhere any time soon. But gradually we realise life is not over and is adjusting to our situation. As you have been spared all the horrible side effects that we read about on here, you probably would have been ok. As soon as you can go! At least this has given you time to get to grips with ET, I wish it had stayed at home😬. You're son has done well and there is such opportunities out there for them in this small world of ours.
I'm not on Facebook and being new as we are, I don't know how we go about getting in touch without putting details on here. If I'm reading you correctly then maybe we need to contact Maz, she may kindly assist us. If I have it wrong apologies.
Yes I just thought we could message each other privately if you were also on Facebook . 😀
ET and blast cells - new here and overwhelmed 
Fatigue from ET or hydroxycarbamide
ET progression question
Question about ET and progression 
ET Question (Dizziness)
