The doctor just called. I'm Jak2+ . I'm 41 years old. I have a 22 month son and found out my platelets were elevated (507) at my prenatal appointment with my second pregnancy. I miscarried in March and since then my platelets have hovered around 600 or so...645 the highest. I've had tests for celiac, RA, Lupus, blah blah..all negative. Turns out I just have a good old fashioned mpn. Dr was positive, said I only need a baby aspirin if I'm still trying to conceive. I had thyroid cancer at 26 and was treated with a thyroidectomy and a great big dose of radioactive iodine. I'm totally lost and thoroughly disgusted. I've been tired, achey, vague headaches, and random tingling in my hands and feet. I don't know whether to look for a bone marrow donor or get a lobotomy.
Help. Thyroid Cancer Survivor now MPN Survivor? - MPN Voice
Help. Thyroid Cancer Survivor now MPN Survivor?
Hi Jennifer1974,
Please accept my sincere condolences on the loss of your baby. You have been dealt a rough deal. Your sadness really comes through in your post.
You don't say what mpn you have but you will get lots of support from this forum. There are many members around you age and with young children dealing with the strains of everyday life and Maz our site co-ordinator will be able to help you with leaflets and information. She can also set you up with a buddy to talk to or correspond with when you need it. It's tough when first diagnosed but arm yourself with as much information as you can and you will work out what helps you and what doesn't.
I am 62, diagnosed with PV 11 years ago. I survived with just Aspirin and venesection until 3 years ago when I commenced Hydroxicarbamide. I also had a partial thyroidectomy about 20 years ago so understand your frustrations at being dealt a further blow to your health.
Please try and keep your chin up.
Much love to you.
Judy xx
Thank you. My Hematologist/oncologist says Essential Thrombocythemia as all my other blood counts remain normal for now.Eventually I will need a bone marrow biopsy I guess. I'm devastated as I assume everyone here was by the news that life will never be the same again. I've never even heard of such an illness..not sure how to tell my family. So far I've only told my husband and my brother. .
Hi Jennifer, I am so sorry to hear that you sadly lost your baby, what an awful time you have been having, and now on top of that to have been told you have ET. I would advise you to read as much as you can on our website mpnvoice.org.uk, especially the section on communicating your feelings mpnvoice.org.uk/living-with... which gives you useful tips on how to tell people about your MPN. I can also, as Judy said, send you some of our booklets which are very useful in explaining what ET is and how it will affect you; family and friends sometimes find it easier to understand MPNs if they can read about them and then ask you questions. If you would like to talk to someone who has ET and has been through pregnancies then please email me at maz.cd@mpnvoice.org.uk, it might help you to be able to talk to someone who really does understand all the emotions you are going through, but as Chris has also said, you can also ask your GP to refer you to either a clinical psychologist or even a counsellor for some support. We can all understand how you are feeling about your diagnosis of ET, so please do ask any questions you have, or share your frustrations, we are all here to help and support you. Best wishes, Maz
Hi Jennifer
First of all big hugs you're having to deal with a lot at the moment - hopefully you have a good support system around you at home. However you have come to just the right place for advice and support as a fellow MPN sufferer.
I was discovered to have ET, during the later stages of pregnancy with my son- over 20 years ago. A lot less was known about MPNs back then. I was told the little they knew; it was a blood disorder and that it was treated with a baby aspirin and that I would be monitored to check if my platelets became too raised (1000+) at which point I would have to take a stronger form of medication.
I was 38, back then and in some ways the lack of information and non alarmist language meant I just got on with it.
Now 20 years on so much more is known which is certainly a blessing but sometimes the language (cancer, chemotherapy drugs etc) can be quite frightening.
I took just aspirin for about 10 years. Then I started on Hydroxyurea (I take 9 x 500mg) each week. I'm Jak2+ - my platelet count remains in the low 400s, I'm monitored every 12 weeks and have worked full time for the majority of the time my son has been growing up and would consider myself to be in good health. Next year I turn 60.
Arm yourself with as much information through here and other websites (MPN Voice, Patient Power etc) as possible and ask both doctors and people on this site as many questions as you like.
With the advances in medicine progressing so fast - by the time you reach my age they could well have found a cure for all MPNs. I hope so, in the meantime more hugs and I wish you well.
Take care
Amanda
Hi Jennifer
I have PV, jak2+ and was on aspirin and venesections for the first 10 years and only started on interferon 2 years ago, I'm now 49. I have to have parathyroid surgery in a few months, dreading that!
It is an awful lot to take in and telling people seems very daunting, but it is nice to know that the family and friend support is there, as well as the added support and knowledge that you will get from the amazing people on this forum. I feel for you and send lots of love. Mel xx
Hi Jennifer, , very sorry to read what you've been through, and now to find that you have ET. As you see from what the excellent responses the others have posted you can lead a reasonably normal life for many many years with your ET being managed with drugs. That said with all the trauma you might benefit from a regular session with your local clinical psychologist if you aren't seeing one. I have used their service and found it very good to let off steam and air things I wouldn't perhaps talk to my wife about. .
This is a good Forum for support and getting your questions, concerns answered. .
Best Wishes Chris
My Hematologist is referring me to a psychologist because I've been so depressed even before I got my Jak2 result. I just knew something wasn't right. Thank you for all your kind words. It helps to know you're not the only one. I somehow stumbled across this forum in my Google search, but I'm not from the UK. I'm from Detroit, Michigan.
Hi Jennifer and welcome to the forum.
I was diagnosed with ET (Jak2+) earlier this year. I am 60, so considered high risk therefore I am on aspirin and hydroxycarbamide. My platelets were only around 500 but now down to 288.
Do you know which MPN you have? You have got youth on your side, so as your doctor has said you only need aspirin. You should ask for a referral to a hematologist however especially as you are considering conceiving again. It is quite a complex condition and I am still getting my head around all the information - but I am so glad that I have at least found this forum. If you have any questions Jennifer there is always someone who will respond to you.
Take Care
Mary x
Hi Mary,
Apparently ET. I am seeing a Hematologist/oncologist. My other blood counts are normal for now. He doesn't think I need a bone marrow biopsy..yet. He said I can take a baby aspirin while trying to conceive. If I wasn't trying to conceive he said he wouldn't treat me at all yet. Although how are you supposed to manage these weird headaches?
Jennifer, So sorry to hear of your loss. Alot to deal with on top of the ET. I have Et as well but considered high risk being ,62, jak2 with previous TIA. Diagnosed in Oct 2015 have been on HU. Platelets down but still have daily headaches. Best advise is keeping hydrated. Stay on aspirin as long as possible. I wonder sometimes if the symptoms I do experience are from the condition or the medication. From what I've read, ET is not as serious as MF or PV - my impression anyway. It's alot to take in but try not to worry too much.
Well hopefully I don't convert to another MPN. The worst is I have no control over it. I guess on the bright side this was discovered before I had a stroke or clot. My Hematologist says it's not life threatening but I have a hard time believing him
Hi Mary im same as you ,now im still considered high risk ,just turned 64 the Dr insists i start treatment because of cardiac issues also my platelets 526 , wants it under 450 fact i have daughters wedding next month ,he is holding off till afterwards hope your coping okay on the drug regards Holly
Hi Jennifer, so sorry to hear what you have been through, i agree with all the posts our friends on here have said . i have ET jak 2pos havent had the bmb yet ,i was diagnosed 3year ago start hyroxycarbamide next month . it is daunting at first , because its one these rare conditions friends and family have never heard of it , but this site is great ,full of lots of support and does make a difference to our well being , take care best wishes Holly
Do you have migrating joint pain? When they first noted my platelets were elevated(507) I had no symptoms. Since they have gone up to 600s I have strange headaches, tingling in hands/feet and migrating joint pains...and of course fatigue
Hi Jennifer again, regarding joint pains. I considered myself as having no symptoms at diagnosis apart from fatigue. However, I did have increasing joint pains which I had put down to ageing. Since starting the hydroxy they have disappeared!!I know it's early days yet....but it does make me wonder if indeed it was part of the ET. I have never had headaches or tingling but I know other people have, and I do think that aspirin helps with that.
That is the other good thing about this forum, we can discuss and compare symptoms treatment etc., and in so doing educate ourselves.
Mary
The headaches aren't bad just annoying...along with the tingling that comes and goes. The joint pain is just the last couple of weeks....my stress is through the roof and I'm sure it's made my platelets go higher. The pains go away when I'm moving around.
You could always ask your hematologist could you try baby aspirin to see if it alleviates your symptoms. The stress you are encountering is totally understandable. You have been through a lot for your young age. You need so much support at this distressing time. As someone has said earlier there is a buddy scheme available here which may be helpful for you. You do not have to be alone on this journey, we're all here for you.
Mary x
Yes but hard to tell with me, i have Arthuritis for 24 year now but i get strange headaches too and tingling in feet n hands and yes the dreaded fatigue My heam said to me last week he wants to start me on treatment before i get more symptoms ! and my age also
The fatigue hits hard in the afternoon when I'm at work
Im glad im retired now ,dont think i could hold down a job now .
Hi Jennifer, so sorry to hear of the ordeal you have faced so far...I have ET and have had aspirin do far. I am 47 and was diagnosed 3 years ago... my condition is changing to MF. Re symptoms, I do get headaches bur have slwsys been a bit headachy... I try to drink lots of water and fluids which seems to help. Tingling..again I have had this too but infrequently. I try to walk 30 mins daily snd move around a lot during the day which I find helps. I would echo what others have said. Get as much information as you can and ask your medical team everything on your mind.. ET can be very manageable..good luck
X
Thank you. Everyone seems so positive. I'm trying...trying so hard..I have a 22 month old beautiful boy who will not tolerate mommy being sad and laying around.
I'm 41 and find the fatigue the most debilitating symptom. My kids are older than your son, but I sometimes still struggle to get through day without needing a lie down! I am fortunate not to have to work, however I am pretty sure that if I did work I would struggle to get through day, my stress levels would be off the scale and consequently my platelets would be much higher!
Ruby are you on any meds other than aspirin? My Dr said he only prescribed aspirin for me because I was trying to conceive but who knows if that will even happen.
No, no meds other than aspirin. Have been offered some to see if eases fatigue but have opted out as I think I could end up feeling worse than I do! Also long term use of these drugs for our age group doesn't have the greatest prospects!
Are you referring to hydroxyurea or angraylide? I would refuse it too unless I absolutely needed it.
I just started feeling fatigue within the last month..basically since I've been seeing the Hematologist and have been totally freaked out. I'm sure part of it is depression. I feel like I have to keep moving or that will be it..I will truly be "sick". It's hard to focus at work but at the same time gives me something to think about other than this stupid acquired genetic mutation. Ugh.
Hi Jennifer. I work full time in a fairly demanding job, sn5d my MPN hasn't stopped me yet. I do have times when I am fatigued but for the most part I have managed that by limiting my working day to 8 til 6. I also have a 7 year old, so a bit older than your nearly 2 year old...I also find work helps distract me and reminds me that I do not hsve to be defined by this condition.
The fatigue is strange. I feel exhausted one minute and a half hour later I feel better. What a weird disease. Why couldn't I have acquired a cool mutation like on Xmen?!
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Why are my platelets normal now with ET?
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