So I’m 52… have always been told that I was disgustingly healthy. Active mother of two. Then in 2016, I almost bled to death was hospitalized, blood transfusions and had an emergency hysterectomy. 2018 on annual blood test noticed platelets were in 800,000’s. Doctor looked at 2017 test and platelets were in 700,000’s. Had a bone marrow biopsy March 2021 confirmed Essential Thrombocythemia triple negative. Started Hydroxyurea a month ago, platelets are down to 630,000 and I feel a lot better. Initially I was angry because I have always tried to live a good life, be healthy and stay away from drugs and alcohol. Then I get diagnosed with some rare blood cancer that is not a result of any choices I made in life. Now, I am determined not to let this define me. It is good to know what is wrong with me. I was so very tired all the time, I really thought I had some kind of life draining depression. Anyway, it is encouraging to be able to communicate with others who have an MPN.
Whoa: So I’m 52… have always been told that I was... - MPN Voice
Whoa
Welcome to the forum. Glad you found your way here. This is a great place to get support and information from a patient perspective. It sounds like you have worked your way though the shock of finding out you have a rare "blood cancer" and have moved on to a survive and thrive approach to you MPN. This is much better way to live.
I was diagnosed with ET about 30 years ago. It progressed to PV about 7 years ago. I have lived a good life and at age 65 continue to do so. I plan to keep doing so despite some challenges with the MPN and other health issues. I have another genetic condition (NF1) that increases my risk of MPN progression and has caused some other issues. You are absolutely correct in that we are not defined by our diseases. We are defined by how we deal with these challenges and choose to live our lives.
I am glad to have you as a member of our MPN family. All the best to you on this journey.
Thank you for responding. It is very encouraging to hear your story. You are an inspiration . 🙂
Yep, been thete all right! I was diagnosed with PV in 2005 aged 50. Initially I was treated by Asprin and venesection. A couple of years ago I was started on Hydroxy 500mg every other day following a BNB which showed I am pre MF. During this time I have suffered extreme fatigue and bone pain which prevented me from walking a much as would have liked. In spite of this I always remained positive and got on with life.Since then my Hydroxy dosage has been increased a couple of times and I am currently on 500mg daily. Am now feeling a lot better and since January have been back walking, am currently doing a 10,000 steps a day in May fundraiser for my Hospital. As Hunter said
hello Bug68 and welcome to our forum. You have a very good positive attitude which is good, it is very daunting when you are diagnosed with ET and have to start taking medication, we all do understand and I glad that you have found the forum, we are all here for you.
I would suggest that you read the information on our website mpnvoice.org.uk, there is lots on there about symptoms; medications; ways to feel better, and much more.
I am glad that you are feeling better and hope you continue to feel well. With best wishes, Maz
We all have those thought of why me. Unfortunately sometimes it’s just down to genetics or just bad luck. I try to look around at people with MS and worse conditions and remind myself how fortunate I am.
Hiya Bug
I was diagnosed with PV in 2015, just after getting the all clear from breast cancer. I had been going to the doctor for years with chronic fatigue, dizziness, painful joints and brain fog. It was only after a minor operation and follow ups that they asked if my GP had spoken to me about my bloods as they had written to him 3 times with their concerns. Anyway I was diagnosed with PV Jak2+ and had 2 sessions of venisections and put straight on Hydroxy 1000mg a day.
You have found the right place to be as everyone on here is super helpful. Don’t Google your condition because there is so much frightening stories out there that are nothing but poop.
Everybody on here will be experiencing what you are going through so you will receive the best support you can get.
One or two words of advice, have your Hydroxy at night so it doesn’t make you tired during the day, and something that your never told is if you are sexually active then use a condom. Other than that you should be feeling better after taking it but just listen to your body. If you have critical illness on your life insurance as well then you should get paid out with this condition.
Enjoy the site, you couldn’t find friendlier people anywhere.
I have the critical illness paperwork in hand. I guess it took me a minute to accept this is real. I’m going to file a claim though. The testing has been a big expense.
It’s rubbish, our diagnosis I’m 53, diagnosed ET a year ago, unlike you I haven’t led a healthy lifestyle and took my body for granted most of my life. Started looking after it few years ago, felt same as you after my diagnosis though!
Nothing I did to myself caused it..
Hard to process, but hopefully treatment won’t impact much on your life, so many on here find it doesn’t.
This is a great community, supportive and informative, and here for anything,
xox
Welcome to the community.
I too was happy to have an explanation for the fatigue and low grade generalized pain was gradually worsening over the years. I had put it down to depression as well.
Hearing the diagnosis was a bit of a seesaw initially - going from healthy to incurable cancer in a single day, but once I started reading up on it I figured it wasn't going to be too bad, more tedious and moderately expensive. I was put on Hydroxyurea I noticed vast improvement in under a month.
I was diagnosed in Jan 2021 we are still working out the proper dosage for HU, starting at 500 mg/day until the platelet levels plateaued, moving to 1000 mg/day which bought my numbers down to mid range for platelets. So we shifted to 1000 4x/wk and 500 3x/week.
I would recommend getting access to your CBC panel and if the system you use doesn't already track it, keep a spreadsheet on your numbers, all of them, not just the platelets.
Being able to see the numbers and the trajectory of how they are changing over time gives me the feeling of being more in control of my care than I would otherwise have. For example: my doctor did not tell me that the last test also showed a low red blood cell count, and when I developed symptoms of anemia, it was nice to be able to see why that developed. And knowing that the platelet levels were good and had dropped rapidly at the prior dosage, I felt secure in temporarily dropping the current dosage until I felt better.
That’s great advice on keeping a spreadsheet nightshadow. I’ll take that on board and do the same!
Thank you for the support and advice. ❤️
Welcome Bug68! Really happy you’ve found you way here, the people and info on this forum helped me immensely in accepting my diagnosis and understanding that my MPN is something I’ll live with rather than be defined by, and I know the gang here will do the same for you 💚
Thank you
SOUNDS LIKE WE ARE TRAVELING THE SAME PATH. I AM NOW 79, STILL GARDEN (SMALLER ONE) AND MAKE MOST OF MY OWN REPAIRS/ CHANGES TO THE HOUSE. i JUST HAVE TO DO IT SLOWER. GOOD LOCK. HOPE YOU LIVE A GOOD LIFE TO BE A HUNDRED
Hello Bug68
Similar situation happened to me about 1 year ago. Yes it messes with your emotions. I’m glad you are not going to let it define you. Stay strong and well done
Kiki64
Hi Bug!
Welcome to our wonderful group!
I was like you. Thought I was healthy and doing the “right thing” for my health. Diagnosis after 3rd TIA. When I changed the lifestyle I thought was great, to better foods, no grain except rice, no sugars, etc (Autoimmune Paleo Diet) catered to my personal needs and heritage, I turned my life around. I studied a lot, dug deep into literature and seminars and then figured out my life was poisoned from the moment I was born. We live in a world full of assaults on our health and some of us just can’t handle it, while others smoke like chimneys and are 95 and have nothing.
There is so much we can do!!! Step by step, I’m transforming my life and health and I’m better off in so many ways than before. So glad you’ve decided to face life and keep your shoulders square. You’ll be absolutely fine. We’ll help You however we can. 🙂👍
Anag
I am also triple negative ET. We are rare amongst the rare. I was diagnosed 9 years ago and started HU 7 months ago. Have discontinued treatment for now due to experiencing peripheral neuropathy and only a small reduction in platelets. Will discuss other options with haemo next month. I hope HU works well for you. It seems to for most people. Good luck.
Is this a sign of progression from ET to MF?
ET Jak 2+ Pegasys working well but ...
Is this normal for platelets to increase so quickly ?
Besremi was approved for me by the insurance provider
I'm new here. I was recently diagnosed with ET. A question about onset of symptoms and fatigue.
