ET, JAK+ scared

[mickey64]

Hi everyone, I was diag with ET and they said I was Jak2 positive. Back in Feb my platelets were 556, my GP said nothing but in June I happen to look at my report and it said Dr was called, since I am a former cancer patient who has been clean for three years I was worried. He said it could be a lot of things and seemed to happened since my surgery three years prior. Another blood test in July 750, stopped B12 shots which I was getting every month and another blood test in Sept down to 650, then an apt with Hemo/oncologist and back up to 712. He states I have ET and since I am over 60 I am at risk. Need to take hydroxea second choice would be Angrylide and he says causes too many side effects, inferon is the third choice and jakifi the newest drug the trial is closed and its $300 dollars a pill. OK so BMB a week ago and full PT/CT scan to make sure no cancer lurking anywhere. I'm scared to death to take this medicine, I am a caregiver to a 93 year old, I work full time and live with my grandchildren who are germ magnets, LOL. I guess I'm scared because of the immune system which I am being so careful with because of being a former cancer patient. I'm thinking 2nd opinion? but don't want to have a stroke and I am noticing side effects which I had no idea what they were from before. I'm lonely lost and depressed and cannot wrap my head around all this. I am going to be 64 next week. My fear is my immune system and because I had lung ca three years ago, I had a lobe removed, it was caught early so no chemo/radiation was needed. They also say I have COPD but it has not effecting me yet but go on this drug and it kills all the other cells??? and then I have problems. please help, I'm so glad I found this site! Sorry I'm ranting like this been crying for weeks! Have to mention I have a very stressful life and this past year has been horrible. Also do we have blood cancer because I can't anything on the cancer sites for this and my Hemo will not answer me. Thanks Mickey

[Aime]

Hi Mickey, so sorry to hear of your diagnosis and also your previous ill health. I am no medic so cannot help with those worries but your haem should be listening to you and answering your questions. As this is not happening and increasing you anxiety, I would be asking for a second opinion.

Any appointments you go to, write out your questions and worries beforehand and be quite assertive in getting your answers. It is your body and your illness and you deserve the time and explanations you need as worrying about your condition will just make things worse.

There are lots of people on this forum who have had ET for years and are still here, I am sure they will reply to you. I have PV and was diagnosed in 2012 and remember only too well the worry, lack of sleep, once you know more you will be able to deal with it - not knowing is scary.

You have come to the best place to get support, help, advice and friendship from lovely people who understand what you are going through. Maz, from MPD Voice will access medical advice for you and everyone else will be there for you.

Take care, keep in touch Aime xx😺

[Aime]

Hi Mickey, I meant to answer your last question- yes we do have a blood cancer but not such an aggressive one as many. The name of what we have got isn't important but getting the right medical and emotional support is.

Kindest regards Aime x😺

[craigdarcy in reply to Aime]

Hi there. Don't panic this is no like the things you have already gone through . People here will testify they have had for years 40 +with little effect. I am ET+ so your in good company😜.

Others struggle mostly with fatigue and itching, so a walk in the park for you😰. I was told to try and reduce stress / hours - live clean and "crack on". the worst you can do is drop dead right ! so don't worry to much.

I have two young children so I worry for them , but if you stay positive and look after yourself there is no reason to panic just yet.

Read as much as you can here on the forum and perhaps attend a get together . We stick, and look for each other. You have joined and that's a good... Sorry- great. Read the Jedi reject blog , he is inspiration able. Good luck from me too.

[mickey64]

Thank you Thank you for your wonderful replies and support. Some site's say it not cancer and some say it is. Some say there are no cancerous cells so it is very confusing. I'm wondering if I got this from the operation if the cancer spread to the blood?. My Dr says no. Can anyone explain what this Jak2 is and have you heard of the new medicine Jakifi, can you go into remission ever or do you always have to take the meds??? . also there are people under 60 that have had this for years and take nothing but aspirin, if it was cancer wouldn't it be spreading everyway, I'm just at a lost here. All my blood work is good except for the platelets, I just saw my bone marrow test and so far nothing detected, they sent it out for specialize tests for some Philadelphia chromosome and I do not see anything about Jak2 on the bone marrow biopsy should they have not tested for that also? The first blood work at a regular lab said Jak2 mutation noted 10.3 wonder what 10.3 meant that was the range they listed. I know a lot of questions, I am sorry, I can't help but say why me?? just when I thought things were going good, I quit smoking years ago, I ate all good, UGH I cry a lot now. Now for the meds?? Hu, angrylide why is one a chemo drug and the other is not? I know lots of questions and I am sorry. Thank you all Mickey

[zvinkovic in reply to mickey64]

Hi Mickey,

I am sorry this got you so worried. I am 35 now and I was diagnosed with ET 16 years ago when I was 19.

ET is not cancer, it is a chronic disease of the bone marrow where it produces too many platelets and so far there is no cure for it. JAK2 mutation is mutation of the gene which is present in about 50 percent of the cases of ET, there are new meds being developed targeting that specific mutation.

I think that Jakafi is medication for myelofibrosis, ET is treated with Hydroxyurea, Interferon and Anagrelide. I believe Hydroxyurea is considered chemoterapeutic drug because it works in that way to supress bone marrow. Also you have to take aspirin or other anticlotting drugs to prevent thrombotic event.

Philadelphia chromosome is the abnormality of the chromosome associated with chronic myelogenous leukemia so they have to check for it to rule out leukemia.

I expect to have life as long as anyone else not being ill, I accepted to have to use Interferon or other medication for the rest of that long life and hope that in the duration of that long life some scientist will find a cure and there will be no more need for medications.

I wish you all the best and feel free to ask if there is anything else you would like to know.

Best regards and greetings from Croatia.

Zlata

[tracey13 in reply to mickey64]

HI

My husband has got PV jak2 positive. We thought it was a primary cancer, but after reading on here we've found out its now classed as a malignant cancer and the ABI insurers have grouped ET and pv as a critical illness.

These blood disorders can be managed and you live a normal life

We've just put it to the back of our minds apart from fatigue my husband is fine. He gets fuzzy headaches when he's due a venesection.

Take care

Tracey

[craigdarcy]

Lots of questions. Check the site for the Doctor. He will answer what he can for you. But as far as I know it is blood biased not tissue so it should not spread. It is a symptom baised illness and not terminal ( unless to have a hart attack ) . Stop crying first, it won't help you our your family. Ask the doc !! We are better of than loads of people. I was told to remember I am the sane person as I was before I found out. The only difference is knowledge , that's good ye!😳

[tracey13 in reply to craigdarcy]

Yeah this blood disorder isn't invasive so it won't spread.

This was peace of mind for us!

Tracey

[Hidden]

Hi Mickey sorry you do not seem to be getting the support from your Haem he needs to answer your questions and listen to your concerns. I was diagnosed ET JAK+ in April this year at 58. I have been taking HU since then and luckily have very few side effects, a little fatigue and since being on here and following the advice of Twinkly and others that a little exercise helps with fatigue strange as it sounds this has been better. I also have Sideroblastic Anemia and only one functioning kidney. It is so hard to get round and at first I didn't want to talk to anyone - this put my hubby under some stress as you can imagine - find someone you can talk to or contact Maz on the MPN (MPD) website as they have a buddy system and will try to find someone you can talk to. I found the website and this forum really helped me and can only say try to be positive even with all you have already been through and think onwards and upwards.

Caz x

[millycat]

Hi Mickey, sorry to hear of your diagnosis , I also have ET I was diagnosed with about 12 years ago and have been on hydroxy since then..... It's not too bad.... Honest. Once you start taking some meds you will feel a whole lot better. Make sure you take some time for yourself especially until your platelets are sorted out. I bet you feel completely frazzled and confused at the moment. Things will get better for you and we all await a positive progress report in a couple of months

[Mazcd Partner MPNVoice]

Hello Mickey64, welcome to our forum, as you can see from the replies you have received, we all understand how you are feeling, it is a very scary time when you are diagnosed, it can take a while to come to terms with being told that you have a MPN, but as you can see, there are many people who were diagnosed many years ago and are still going strong. I think it would help you to have some of our information booklets on ET, Hydroxycarbamide and Anagrelide, so please email me with your postal address [e-mail] and I can post them to you. I also think it would help you to have a buddy to talk to, I see that Caz has suggested this to you, a buddy is someone who has the same MPN as you and therefore can help and support you from the perspective of someone who really understands what you are feeling, if you would like to have a buddy then please email me. With regards to your question about whether or not ET, or any of the MPNs - ET, PV & MF, are classed as cancer, in 2008 The World Health Organization reclassified myeloproliferative disorders (MPDs) as myeloproliferative neoplasms (MPNs), the word neoplasm (new growth) is a term that has been used both for cancers (malignant neoplasms) and non-cancerous tumours (benign neoplasms) and because ET, PV and MF are characterized by uncontrolled cell growth most haematologists and cancer organizations do classify them as blood cancer, but you must remember that the symptoms and prognosis can vary widely. Best wishes, Maz

[mickey64 in reply to Mazcd]

thank you, do you want my home address or my e-mail address? also the buddy yes I am in need of one! for sure Thanks

[Mazcd Partner MPNVoice in reply to mickey64]

Hi Mickey64, to be able to post the booklets to you I will need your full postal address, and I can either post the buddy information and request form or email it to you, but please DO NOT put any of these details in a reply on this forum, can you email the details to me at [e-mail] Best wishes, Maz

[mickey64 in reply to Mazcd]

Sent to the e-mail listing above. thanks

[Mazcd Partner MPNVoice in reply to mickey64]

got it and am replying Maz

[jeanr]

Hi Mickey-- I just turned 71, and my platelets started increasing in 2011, i was diagnosed with ET and JAK negative, and then a year ago I was referred to a hematologist and then 3-4 months ago started on hydroxy. First of all I have taken to it well, and it has reduced my platelet count steadily, its the drug that reduces quickly. I'm the child care person for two active grandchildren, so I was worried I would be able to keep going, and so far no worries. You need someone to give you information, and answer the questions you have. It is scary. There is a difference between Interferon and Hydroxy - where I am (Canada) Interferon is not offered I think its the cost so you are fortunate to have a choice. This forum offers a wonderful brochure that explains ET, and I am sure MAZ would send it out to you. I would suggest asking to speak to someone professional, and also reading up on the difference between the two drugs and what they offer. This is a great supportive forum, and I came to it with worries and I ended up feeling supported. I still do get what I call the heebie jeebies, when I get in a bit of a panic, and I find walking helps, putting one foot in front of the other somehow makes me feel in control and I come back relaxed. With all good wishes, Jean.

[mickey64]

Hi Jean, can you tell me how high your platelets got? How much of the HU do you take? My Dr says that the interferon had loads of side effect. they have a new medicine called Jakifi but he says its not for ET but I read where it is, so very confused. I am very upset I think if it was not a blood cancer as they say or not a cancer pill it would not be so bad and then there is the fact it is soooo rare. thanks