Newly diagnosed

Just found out I have ET after BMB. I am new to this site and the whole concept of having blood cancer. My hemotologist is having me take aspirin every day and we are doing a "watchful wait".

I am JAK 2 positive and last platelet count was 512.

I have lots of issues/symptoms.

Extreme fatigue

Itching and burning skin especially hands,feet and legs.

Insomnia

Dizziness

Headaches

Tingling in arms,legs,hands and feet

I am doing about 40% of what I did a year ago. Everything is an effort. My doctor says that he does not think these are symptoms of the "condition" that I have. I would like to hear what some of you have experienced and your thoughts. Thank you.

15 Replies

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  • Hi

    Welcome to the forum, you will find lots of support and information here.

    Sorry to hear of your diagnosis, it is a big shock when it happens.

    Many people here will tell you these are definately symptoms of your condition and im sure you will get lots of tips on how to help alleviate them.

    My main symptom has been fatigue, I have been really trying to up my excercise levels recently and have found this is helping, i think because it helps me sleep better too.

    Drink lots of water too, this will help.

    There is plenty of hope with these conditions and people will tell you here they lead full active lives, yes there is some adjustment but thats natural.

    Best Wishes

    Paul

  • hi you will get lots of advice and support here is there a doctor that is familiar with your condition where you are also are there any support groups that might help at all there are leaflets if you ask maz I am sure she will send the ones relevant to you wishing you all the best michelle

  • Thank you both for your replies and encouragement. I truly appreciate it.

  • we need to support each other where we can xx

  • Michelle & Paul, Thanks again for replying. Can you tell me what Mpn you have and some details on your journey thus far?

    I live in Wisconsin and am currently researching specialists to go to out of state to get a better handle on all of this. It took 5 months to get a true diagnosis and I am just trying to process all of this even though I had an idea what I had, it is now hitting home.

    Thanks again, Janet

  • Janet, I live in CT and have had MF for 24 years. It has been quite a journey for me to get

    a correct diagnosis & then finding both Doctors an medical centers that I was comfortable

    with. I was diagnosed with MDS in 1991 at Yale New Haven, Consulted with at Cleveland

    Clinic, confirmed MPN (primary myelofibrosis) in 2011 at Dana Farber. In 2013 went to see Dr. Ruben Mesa at the Mayo Clinic in Scottsdale AZ, for a second opinion. He is one of the top MPN Doctorsin the US. Again confirmed & discussed possibility of BMT in future. With his recommendation due to my location, I'm now going to Memorial Sloan Kettering in NYC. It's been an adventure,but for the first time in 24 years, I'm truly comfortable with knowing what I have & the plan for the future.

    One the most important things that I did over the years was to attend seminars focusing first

    on MDS, & then MPN illnesses. If you check out the MPN Advocacy & Education you'll find seminar's that you can attend. In February there is a MPN event at the Mayo Clinic

    in Scottsdale. All the top MPN experts in the US and several from Europe will be there.

    Not a bad place to visit during a cold winter. Another big plus, is actually seeing folks that

    have the same illness & talking to them.

    Hope this helps on your journey. Let me know if I can give you more info. I won't be

    going to Scottsdale this year but attending MPN Advocacy seminar in Washington in

    March.

    Regards, Islander47

  • Hi Janet.

    I have PV and am 43. I originally started having problems 2 years ago (although looking back i know now i have had this for a long time), when i was very Anaemic, my Hgb was just 5.

    I was admitted to hospital, and they did all sorts of scans, including a bone marrow biopsy, have me a blood transfusion. They told me i had a VERY enlarged spleen, i was told it was the biggest they had seen, but im not sure thats true, it is big though.

    When i went back for results of the Bone Marrow, i was told i has fibrosis in the bone marrow, and given a diagnosis of Myelofibrosis.

    I was sent for an endoscopy as i was iron deficient so they suspect some bleeding, they discovered i had gastric varices which whee oozing blood, they think these have been caused by the added pressue caused by my spleen.

    A couple of months later my diagnosis was changed to PV, i was on iron supplements and this made my HGB levels shoot up. They also said the fibrosis in my bone marrow was of a sufficent level for a MF diagnosis.

    I have spent the last 18 months or so having various procedures, multiple endoscopies, a transjugular liver biopsy as i have elevated liver counts (fortunately my liver is fine though).

    Last year i had a run of bugs, one after another, which made me very fatigued. My immune system is a mess and my lymphocyte counts are below normal.

    I ve just been put on Ruxolitinib in the hope it shrinks my spleen, and that will hopefully help with the varices / liver counts and fatigue, its early days yet though.

    My sister also has an MPN she was diagnosed with ET about 12 years ago. She just takes Clopidogril.

    All the best and hope things go ok for you.

    Paul

  • Hi Janet, welcome to our forum. I myself have ET, I was diagnosed 11 years ago so know how you are feeling. One study carried out asked 79 people with ET and PV (polycythaemia vera) about their most significant symptoms, the results showed - fatigue 70%, night sweats 40%, bone pain 40%, itching 40%, fevers 9%, spleen pain 9%, undesired weight loss 8%, and the symptom that probably impacts most on daily life is fatigue. You also mention dizziness and headaches, these are also often reported by patients. I am happy to send you a booklet on ET, I note you live in Wisconsin, we are happy to post to you. The booklet might help you understand a bit more about your ET and help you with questions you might want to ask your haematologist. The Mayo Clinic does offer appointments at their clinics in Minnesota, mayoclinic.org/departments-... you did say you would look out of state for a specialist, and I appreciate that Minnesota may be a bit too far, but I thought I would send you the link for you to have a look. You could also look at the MPNforum Magazine which does have a list (worldwide) of haematologists who have been recommended by patients mpnforum.com/list-hem./. If you would like to be registered on the MPN Voice mailing list to receive news and updates from us please email me at maz.cd@mpnvoice.org.uk, I can also then send you details of our buddy support, having a buddy to talk to can really help when you are feeling scared about your diagnosis. If there is anything we can do to help, please ask, we are here to help and support you. Best wishes, Maz

  • All hematologists are not created equal. I know of someone with a 700K count that onlt takes 81mg aspirin, but she does not have the fatigue and itching. That, in my experience, points to polycythemia vera. There are new methods of dealing with whatever MPN you exhibit. Perhaps shopping for a new doctor is in order. Best of luck!

  • Thank you all for replying and telling me some very good ideas and sharing some of your experiences.

    I am grateful to have this outlet as it assures me that I am not alone.

  • Hi Janet, sorry to hear about your diagnosis. It is a shock at the beginning but the more you understand about it, the more you feel you have some control. As you will have seen already this forum is fantastic for support and advice - they are a great bunch of people who do understand how you are feeling.

    I was diagnosed with PV in 2012 and suffer from the extreme fatigue, sore joints, itchy skin and seem to be more susceptible to colds, etc. I think you learn to adjust your life to suit your symptoms. My GP said, is it really a big deal if you have a sleep when you come home from work? I suppose the answer is no because luckily my family have grown up. My GP was quite honest that he did not know much about my PV but I gave him the website address, reported back to him after being at the forum in London in 2013 and he is learning as well. As Maz says all the symptoms are common with our MPNs and they don't always correlate with bad blood counts. Sometimes my counts are fine but I still feel wiped!!

    Keep in touch with everyone on this forum as they will help you not to feel alone and reassure you and you will be able to get correct information about your PV. As Paul and others have said, plenty of water and as much exercise as you can manage, helps.

    Take care, best wishes Aime x

  • Aime,

    Thank you for your response. Can you give me any suggestions that may work for the itching?

    It seems that I have tried everything. Mainly on legs and feet. I do occasionally take Attarax at

    night and it seems to help sometimes. It does make you tired though and I am tired enough.

    I appreciate any ideas you may have.

    Hope you had an enjoyable weekend. Janet

  • Different things work for different people re itching.

    My sister has ET and had itching, she was put on anti-histhamines and that really helped. Some people use moisturisers, things like an emollient cream.

    If its after bathing/shower pat dry with a towel, dont rub.

    I believe there is some science to suggest itching is caused when you move between heat extremes, so if your in a hot shower/bath then get out, then your body is moving quickly from one temperature to another so try and minimise that. Maybe have your towels really nice and hot to wrap around you and your legs when you get out so your body cools down more 'naturally'.

    Some people have said when your in the shower, blasts of hot and cold can help, though that seems to go against what i said above but different things for different people i guess.

    I only get any sort of itching after a shower, i dont if i have a bath. I was trying to work out why that might be and realised i usually read in the bath and have a good soak, so by the time i get out the water has cooled so im not going as much from one temperature extreme to another.

    Good luck and best wishes

    Paul

  • Paul,

    Thank you for your ideas. I have tried all kinds of creams and lately it seems to make it worse. Right now I have been using witch hazel. It really has a cooling affect but with this winter weather my legs could use more moisture. Water actually feels really good. I do get the temperature change as at night it is worse.

    On another note, did you get the job offer you were trying for?

    Take care, Janet

  • I have just had by three monthly check-up, my platelets have gone up slightly to 680 , this is my 4th visit. I have been told not to worry as im still considered low risk. I have ET and am Jak2 , so il continue taking my aspirin each day,

    what with that and Sciatica in both legs, awaiting mri scan , think I will have to book a room in hospital.

    I only discovered this last year when I went for a routine blood test.

    I still don't think I've got my head round what's going on, but after the initial shock I did have depression for some time after.

    my only question is how do I deal with this from a works point of view. I do get tired, I keep fit, and yet often im exhausted,

    I am trying to get the right balance but am afraid to tell my employer, do I have any legal rights, its just so hard because its a condition that cant be seen everyone think there is nothing wrong.

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