Hi there. This is my first post as I have yet to receive a firm diagnosis. I am a 71 year old woman who has been healthy all her life. In September a routine blood test revealed high platelets. Fast forward and now I am under the care of an mph specialist at a large regional medical/teaching facility in the United States. Testing reveals I have the fair 1 mutation. This week the blood test showed elevated ldh (330) and high wbc (12000). Last months the wbc was 10,000.00.I will have a bone marrow biopsy on January 29. My doctor believes I have either ET or Pre-pmf. She says overt omg is unlikely. I have no symptoms by the way.
I am looking Gor encouragement and support. The ET diagnosis is what I am hoping for as pre-order sounds so scary.
Also, at this point we are in watch and wait mode. I talk slow his for atrial fibrillation and the doctor says that with my overall good health and the cake mutation there is not a need to start other medications at this point.
This site appears wonderful. Thank you in advance.
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Mtnlife
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When I was first diagnosed I didn’t quite believe the more experienced folks here who told me I’d get to a stage where I wasn’t constantly thinking or worrying about my future (or lack of!) with an MPN. I promise you they were 100% correct, once you wrap your head around whatever your diagnosis is, get the right medical team in place and decide on your treatment approach your worry will start to settle and it will just become a regular part of life. Great to hear you’re feeling healthy and well!
Diagnosis is a rollercoaster and takes some time to adjust. Go easy on yourself and make full use of this wonderful little corner of the internet for education, support and an outlet, it’ll do you a world of good. x
G lad you have found this forum, it is such a useful and supportive hub!
I was diagnosed JAK2 mutation of ET 7 years ago having just been recommended by a locum at our doctors to see a Haematologist. All this was because of a rash on my leg which is permanent!
Then I was put straight on Aspirin and Hydroxycarbamide. It was a shock then to know what this diagnosis was. The Aspirin mix didn't work (kept just collapsing!) so I was changed to Clopydogrel. I was also given a 15 year lifespan.
I can truly say that apart from not liking to take the medication, it has no effect on my lifestyle, how I feel healthwise or anything. I also now think that this diagnosis for 15 year lifespan will now have lengthened. This was of course the idea for us older patients, think younger ones who I have heard on here are in their 30s have a much better diagnosis.
You will find that there is very good advice on here especially from a few well clued up bods who blog. Do hope you find heart and can feel like life is just carrying on a good spiral.
Keep on touch on the blog and I wish you a good consultation with your specialists too, this will be so helpful for you.
same age as you Mardihel, but even now they think this 15 year lifespan is not long enough, probably would be given longer now, Haematologist said 15 years unless something else kills you first!!! Had to laugh it was so outrageous!!
Hi, when I took Aspirin with Hydroxycarbamide, somehow this mix didn't work so they gave me Clopydogrel. Went to a meeting in London and just collapsed to the ground. All okay now though.
Hello and welcome to the forum. Glad you found your way here.
I was diagnosed with ET about 30 years ago. It progressed to PV about 9 years ago. I have lived a good life and at age 67 continue to do so. There have been some issues to manage, both MPN and non-MPN. The issues we face can be managed with proper care.
The good news is that the understanding of MPNs and our treatment options are improving. There have been significant advances in recent years. The best way to ensure that you receive optimal MPN care is to consult with a MPN Specialist. MPNs are rare disorders. Most doctors, including hematologists, have little experience with them. It is important to seek care from a hematologist with a MPN sub-specialty. Here are two lists.
Many thanks for the comments and support. This will teach me to post in front of my computer rather than do this with an e-reader. To clarify, I have the Calr 1 mutation. I take Eliquis as I have atrial fibrillation. At this point I have no symptoms and have always been healthy. My doctor does not want me to take aspirin because I am on Eliquis, a blood thinner. In addition, she says that I do not need additional medication at this point because I have the Calr 1 mutation. This would be a different story if I had the JAK 2. So, at this point I need to be patient and wait for the results of the bone marrow biopsy which is scheduled for the end of the month. And try to keep my mind off of this. Very hard as I live alone.
Your plan makes good sense. No need to add aspirin to the Eliquis. Also not need to hurry into cytoreduction unless it is really needed. Sounds like your hematologist is aware of the difference that the type of mutation makes in determining treatment.
It is important to factor in the A-fib. I also have an arrythmia (Paroxysmal Atrial tachycardia), for which I had surgery. i still get occasional low-grade tachycardia. We keep a close eye on both the MPn and the heart issues.
On a more fun note, which mountains do you live in? I live in the Blue Ridge Mountains. I love mountain life.
wow re the view, we live in East Sussex UK and can see the sea and downs in Eastbourne from our living room, although 16 miles away, just villages and countryside between us and the sea.
Hunter, I believe we live relatively close to each other. I am curious where you receive medical treatment. I am with a large regional teaching facility. Is there a way to correspond privately on this siste?
I actually have two hematologists. I consult with a MPN Specialist at Johns Hopkins regarding my care plan. I have a wonderful local hematologist based in Leesburg, VA who handles the ongoing care. This arrangement works great.
Hi Mtnlife, I was in this position 3 years ago so I really feel for you and understand what u are going through right now. .The wait to find out whether I had ET or pre-PMF, I remember it being a stressful and tiring time waiting for the results, for me it took 10 weeks. I was also terrified. What I can say is just to hang in there. Take things a day at a time. If that is too hard , then an hour at a time. Try to do things that make you happy and take your mind off this until the results are through. Have you asked how long it will take? Also spend time wrapping your head around mpns. This forum is amazing and will help with that. One thought that has always helped me is the fact that it is my job to keep as healthy and well as possible by looking after myself and if I do that hopefully when I need help, that medical intervention and research will have discovered other ways to either help live with mpns better or dare I dream cure mpns. Say in touch. B x
welcome to this community which I’m sure will be of great use over the coming months. I’m 73 and was diagnosed with ET Jak2 3or 4 years ago and have found great comfort and superb info here. If ET is your biggest worry then you are going to be pleasantly surprised because it really isn’t as bad as you will imagine. Just use this community as a sounding board and I’m sure in a matter of months you’ll be reassuring new members. Every good wish Paul
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