Just getting used to finding out that I have ET,... - MPN Voice

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Just getting used to finding out that I have ET, now also have early mylofibrosis

Cabert profile image
32 Replies

Hi All, I got my BMB back today, things are NQR and I have early mylofibrosis. Bit of a shock... was just adjusting to ET. HU has been increased. Just wanted to share as feeling somewhat overwhelmed.

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Cabert profile image
Cabert
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32 Replies
socrates_8 profile image
socrates_8

Hey Cabert...

Firstly, I am sorry to learn that you have been diagnosed with being pre-fibrotic MF.

I am also Post ET / MF, and was diagnosed in 2016...

My Driver mutation is CALR Type2, and am ASXL1+, and probably have 'Acquired Von Willebrands Syndrome (VWS)... But I am still here too... :-)

When I was first diagnosed, I too found it quite overwhelming, and it did take me a little time to come to terms with it all... However, eventually, I simply found myself in a place where I was asking myself... "Well... what now? What am I going to do with this?"

Because I was studying at uni' when diagnosed, I simply started researching all I could to better understand my MPN, and slowly learn, (ongoing...) to find better ways to manage my MPN, as best I could...

Here in Australia, there are very few what I would term true "MPN Specialists" Hence, the urgent need for me to understand more about MPNs.

Eventually, I built a small Australian MPN website, and added MATES Forum. After a year or so, we registered MPN-MATE.com, as a bona-fide Australian 'Not For Profit' Health Promotion Charity, with a Constitutional mandate for how the funds we raise 'MUST' be spent.

Our committee is still small, (MPN patients), and I suppose still in its genesis... But we continue to grow slowly, and hope that by sharing what we learn we can all help each other better manage our MPNs, and hopefully create much greater AWARENESS of MPNs here in Australia, where so very little is known...

This is how I came to terms w/ my MPN, and as you may have gathered from some of my previous Posts, I am about to set-off on an epic 'Cycling For A Cure' ride from Sydney to Coffs Harbour, in NSW Australia, (circa 600km).

2020, was a very tough year to start a new Foundation, and although there have been many false starts, we are finally having our 1st major fundraising event commencing April 10-17, 2021.

We may not raise a great deal money or AWARENESS, on this occasion... (?)

However, I remind myself of the story of the MS Society here in Australia, and how they started 38 years ago, and 2019 was when I decided to take part in my first 'Sydney to the Gong' MS Ride, and that year... they raised just shy of $3M...

Wouldn't that be something to emulate for MPN patients? Not just raising large amounts of money & AWARENESS, but knowing that all of it would be going towards creating better outcomes for treatments, a better Quality of Life, (& all by having made greater Awareness both in society & in the Australian medical fraternity)...

... and who knows... maybe someday a real CURE?

Yes, I do like to dream BIG, don't you? 8-)

Best wishes Cabert, please take it slowly... just one step at a time... Be patient & kind with yourself...

And we will all find our way together...

Steve 8-)

PS. When one creates a 'Not For Profit' here in Australia, there are laws & regulations that govern how it MUST be set up, and policies that form the governance constitution that state: "...if the Foundation is ever broken up or ceases to exist, then the funds raised MUST be directed to wherever the Constitution states..."

In this way, we have protected what we set out to achieve etc...

Cabert profile image
Cabert in reply to socrates_8

Thanks Steve, I will re read this several times as much to think about. Wow. I feel like I have been told of something that is just hanging over me. We never know what is around the corner in life so just have to get on with it. I feel well and obviously you do as you are planning this ride soon. How do we sponsor you or promote this? Everyone advises to get a good MPN specialist but I do feel like I am in very good hands and I like my haematologist already. Since the BNB on Friday and the result of « disorganised « BM and evidence of early fibrosis she is now getting Peter Mac to do more testing. I know I have Jak 2+ . She isn’t certain as to which came first, the ET or the fibrosis but I am seeing her again in 2 weeks.

socrates_8 profile image
socrates_8 in reply to Cabert

Hey Cabert... :-)

Yes, I use to describe it for myself as living with the sword of Damocles dangling precariously above one's head...

And then... quite suddenly in fact, at the conclusion of 2019... We all started to learn about the ensuing pandemic known as COVID–19... And I then realised that the whole world was also becoming somewhat overwhelmed with fears of a similar feeling, and now the whole world too had to contend to living in a limbo-like land...

...And I thought to myself...

ººº Well they may not have a blood cancer, but they too are largely overwhelmed & afraid, and trying to work out how best to deal with these dilemmasººº

In some small way, it somehow made me feel less alone... Just the same as having these MPN Forums does, we have all learned that we have each other's backs, and that we understand what MPNs are and what we are all going through, by and large...

It takes some time to adjust, allow yourself the right to have that time too... :-)

Steve

Cabert profile image
Cabert in reply to socrates_8

Further to my post a few minutes ago I have found the website and donation page. Lots of good information here. Will spread the information to my family and close friends. Thanks for your support.

socrates_8 profile image
socrates_8 in reply to Cabert

Pleasure. Cabert... :-)

Glad you found the website too...

I've also sent you a PM message with some further information about med's etc...

Best wishes again... 8-)

Steve

Paul123456 profile image
Paul123456

Sorry to hear this, I think all of us are a bit shell shocked at first. Be reassured that our medics are making great strides with new treatments so the prognosis is improving all the time.

Do you know your mutations - CALR Type 1 is associated with early ET progression to MF and is a good mutation to have. Also check out Pegasys/Ropeginterferon as therapeutic options. There is growing evidence that they can slow or possibly even stop progression for some patients. My Hem said this is as close as you can get to a possible cure so worth checking out.

Paul123456 profile image
Paul123456 in reply to Paul123456

Check out Dr Kiladjian - google search

I think this applies to JAK2 PV - Dr JJ Kiladjian said that if a patient's allele burden is below 10%, and has been taken interferon for more than 24 months (with complete hematologic response), you can then stop taking interferon and 40% of these patients may not need any medication up to 10 years! (I am assuming that's how long they measured so far, maybe it could go longer....

With 60% of patients, the disease eventually come back within 10 years, but they were still responsive to interferon, if they chose to start using interferon again.

Hopefully this will apply to ET and early MF. However please discuss with your Hem.

Pegasys is not for everyone, some respond better than others and some suffer depression and autoimmune issues. Appears the earlier you start the better but again hopefully your Hem can advise.

Cabert profile image
Cabert in reply to Paul123456

Thanks Paul. I don’t yet. I think that is what my Dr is now looking at further since BMB results. She has gone back to Peter Mac. I hope to learn more soon. I will keep this information to go back to. Appreciate.

hunter5582 profile image
hunter5582

Sorry to hear the news. Not sure what your treatment plan is, but the results of earlier intervention with PEGylated Interferon are quite promising. Besremi (ropegylated interferon) is easier to tolerate if it is available where you are. Would certainly hope that you are reviewing all of your treatment option with your care team. Also hope you have a MPN Specialist on your care team.

Wishing you all the best in the next stage of your MPN journey.

Cabert profile image
Cabert in reply to hunter5582

Thanks Hunter, all new to me but I think my heamatologist is now getting more information. She briefly mentioned a few things including BM transplant but said I was a long way off this. She just said keep living life to the full. I am quite active, row on the Barwon a couple of times a week and I enjoy swimming. Just have to keep going... I am still glad that I now know that I have a reason why I was having all these weird things happening, especially the spongy feet and the ischeamic toes. I just knew there was something wrong but had to knock on many doors to get answers. My platelets have been around 650 for years, since 2014, and no one really took much notice!

hunter5582 profile image
hunter5582 in reply to Cabert

Given where you are at, I would be sure to get input from a MPN Specialist if your hematologist is not one (most are not). I have a terrific arrangement. I have a local hematologist who is a wonderful doc but not by his own definition a MPN expert. I also have a MPN-expert consultant who advises my and my regular hematologist regarding my care. This works great. I found the MPN expert doc on this website. mpnforum.com/list-hem./

All the best.

Cabert profile image
Cabert in reply to hunter5582

Thanks Hunter, appreciate

Cja1956 profile image
Cja1956

Sorry to hear this. I also have post ET MF, but I'm intermediate1. I was diagnosed with ET in 2008, but progressed to MF a couple of years ago so I understand your distress. As the others have said, there are more and more treatments available and seeking an MPN specialist is very important.

All the best to you on your MPN journey.

Cabert profile image
Cabert in reply to Cja1956

Thank you, do you mind me asking how you were diagnosed back then?

Cja1956 profile image
Cja1956 in reply to Cabert

Well so I went to the doctor for headaches and he just did a routine physical and saw that I had high platelets. He referred me to a hematologist who did a simple bone marrow biopsy in his office and some bloodwork and that’s how I got diagnosed with ET Jak 2. Around 2016, my numbers started to become very unstable and he said I I have progressed to PV. But then I developed anemia and my platelets kept rising and he didn’t seem to know what to do. I found this site in 2018, and Hunter and a couple other people said I should see a MPN specialist and I found one in 2019, and she did a bone marrow biopsy, ultrasound and extensive blood work and said I had progressed to MF. I had brought her my original diagnosis in 2008, and the last six months of my blood tests results. She said I did not progress to PV, but was not sure how long I’ve had MF.

Cabert profile image
Cabert in reply to Cja1956

I think I have had this since 2014, amaurosis fugax and then a series of horrific headaches, which I don’t get anymore, but my Dr said they were cluster headaches? Over the years have had all sorts of strange symptoms that all add up!

Otterfield profile image
Otterfield

I'm sorry to hear this. I am post ET MF, diagnosed last year and I'm still coming to terms with it. There is a lot of knowledge and support on this forum and of course on the MPN Voice website. It is horrible but it IS liveable with, we just have to adjust. Keep posting your concerns and feelings - we are all here for one another.

Cabert profile image
Cabert in reply to Otterfield

Thank you xo

JaneWayne profile image
JaneWayne

Please talk about Interferon with a specialist asap. As you are in the early stages this could be the most appropriate treatment for you, because Interferon can halt or slow down progression and moreover can improve the marrow for some. Fingers crossed and all the best for you!

Cabert profile image
Cabert in reply to JaneWayne

I will JaneWayne, I am seeing her again soon

shiela23 profile image
shiela23 in reply to JaneWayne

Hi jayne I'm diagnosed 2 weeks ago ET... im on medication right now by using enterferon with my hematologist. Is the enterferon best medication for the ET ? Is my blood disorder Will become normal by using this???

JaneWayne profile image
JaneWayne in reply to shiela23

Well "best medication" seems to be one that works best for you as an individual, but I certainly think Interferon isn't the worst choice. I don't know if it works out for you, but it is possible you reach hematological and/or molecular remission. Only time will tell...

Plumberasscrack profile image
Plumberasscrack

Hello all and please do forgive my inability to understand all the abbreviations as follows.ET/MF, MPN and so on. I’ve been following this site now for almost a year and how I found it is be known to me.

It all started November of 2019 when my wife and I returned from a cruise on the QM2.

I had a doctors appointment upon my return to find out that my platelets were over 1 million and was told to immediately see a hematologist which I did and after a few months of visits and being misdiagnosed with JAK2 then MF I was in shock and asked my doctor what was I to do, the answer I was given didn’t go over well with me so I went to my primary care doctor and he read the records and suggested I see someone he knew and was very found of. I made the appointment to see this wonderful cancer doctor and after many test I was told I had MF. I was in shock and asked my doctor how could this come about. After getting to know my medical history she concluded that this was caused by my long term use of anti rejection medication I was taking for 15 years due to a liver transplant.

My previous doctors told me there was nothing they can do and I asked him if I had 5 year to live and he said that would be a bonus. This doctor had very bad bedside manners so I moved on and that’s when I met my current doctor who said that the only way to prolong my life was with a BMT. After months of testing my family members my doctors and her team concluded that my son would be my best option for his Stemcells.

In July I was admitted into the hospital an was transplanted in August of 2020. After 6 weeks of this hospital visit and a very slow grafting process I was finally sent home to start my recovery.

For weeks and months I would visit the outpatient cancer institute to get transfusions of blood and platelets. This has been going on up until a month ago where now my hemoglobin is steady at 8 and my platelets are at 40. Now I visit the clinic once a week to check to see if I need blood products.

This has been a very long and slow process to healing, I am about 200 days post transplant and it seems like I’m healing a little day by day.

I hope this information can be helpful to others and when one is feeling hopeless like I was, look up into the sky and ask you God whomever it is you pray to and ask for the strength to go on, and remember to never lose faith because Gods Got This.

Those 3 words keep me going day after day. I pray for those that have MF and find a cure and move on to have a productive life.

Just believe and have faith 🙏🙏🙏

Dovme profile image
Dovme

Hi Cabert

I think you should definitely try and see an MPN specialist. Many haematologists nice as they are really don’t have the experience or knowledge as these conditions are rare. I would also suggest go prepared with your questions

They should provide you with a full detailed explanation of your diagnosis and one that you can understand

You can then think about what treatment is best

Best wishes to you

Cabert profile image
Cabert in reply to Dovme

Yes, she has been very attentive and is hooked in with Peter MAC so feel confident. I think she knows a lot about this condition but having said that I think a second opinion is a good idea. Thanks Dovme, appreciate very much your advice.

Cazbolac profile image
Cazbolac

Can understand why you feel overwhelmed. I was diagnosed with Primary Myelofibrosis at the age of 49 years and was shocked and felt my life was coming to a hasty end. It is now 6 years since my diagnosis and I am fairly well managed on Ruxolitinib. Yes I have bad days/weeks but when the fatigue etc is not to bad, I make sure I do as much as possible. No I am not able to jog or do lots of exercise but I meet friends for lunch or a coffee and I have lovely holidays with my husband. So you can live well while suffering from Myelofibrosis. Good luck with your MF journey.

Cabert profile image
Cabert in reply to Cazbolac

Thanks for your reply. I am really interested to know where others are from, joining little dots across the globe.

Androg profile image
Androg

I just read all here Cabert as I just had my first BMB a week ago after being diagnosed with ET (JAK 2) with platelets over a million.I meet with my cancer doc next week but have seen my results and while I'm not certain, there looks to be also early MF.

I feel as you, quite overwhelmed by first diagnosis, then what I fear is not what I wanted to see 😢

I feel I've been hit with a sledge hammer emotionally, as you have.

I found this group & it has given me info and a place to read, a place to connect with people who are going through this and know how I feel, and lastly, a place of hope amid my hopeless days.

Keep writing, I want to know of your journey and after I know more of what os in mine, I will add to mine.

I am wishing you and everyone here the strength and knowledge to go forward into a scary and unknowable future. Love & support, Androg

Cabert profile image
Cabert in reply to Androg

Hi Androg, thanks for your message. I am still getting my head around this and trying to think positively that no one ever knows what the future holds. Just have to live each day to the full. Keep in touch, I too, am grateful for this forum.

Androg profile image
Androg

Absolutely my fellow traveller 🌸

JaK2ET profile image
JaK2ET

I am sorry to hear of your new diagnosis and I hope that you are continuing to get all the help you need. As you can see, there are plenty of people in this forum with relevant knowledge and experience to share, so do keep posting whenever you have a concern.

Cabert profile image
Cabert in reply to JaK2ET

Thank you, all very new for me.

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