Introduction

[BloodZero]

Hello mates, i have just joined and wanted to introduce myself.

Ive had ET Jak2+ since 2008 (i was 34 and av platelet count wad 1300). I have only started taking Hydroxy in 2019 because my spleen was growing to big.

Now on Hydroxy and Aspirin. Platelets normalized.
Platelets size and morphology not normal.

Like alot of others i experience fatigue, muscle pain and worst of all depression. I once enjoyed sports but now have severe exercise intolerance. I have a physically demanding job which i can only do part-time. I live in western Sydney.

Thats me

[Merry]

Hi BloodZero. Welcome to the forum. I’m also a member of the ET Jak2+ Club. On my lunch break at the moment so not much time, just wanted to say a quick hello. Kind regards, Merry

[BloodZero]

[MPN-MATE Admin]

Hey BZ...

Glad that you have managed to find your way around 'MATES' FORUM okay...

Hopefully a few of the members will drop by in due course, however, we are a tad slower here than on Voice, as were are only just over 100 members strong so far... but we are getting there slowly...

Do let me know how you get on w/ the Doctors I have mentioned to you, but please also ask some of the other members about who they are seeing, and how that's working out for them etc...

Particularly,

* Katie
* Mark
* Allan
* Leon
* Linda

just for starters, Merry whose already said a quick 'Hi' to you lives in WA, where there are even fewer MPN Specialist than here on the East Coast etc...

Anyways, if you' like an Avatar pic? We do have a few to choose from, or just send me a pic you'd prefer & I'll do the rest etc...

Stay in touch...

Best wishes
Steve

[Kinsale]

Hi Bloodzero

I’m Mark, 63 and retired and was diagnosed with ET jak2+ in 2014. Like you I was initially on Hydrea and aspirin and experienced substantial fatigue. I felt like I would randomly be hit by a fatigue bomb when I was on Hydrea. No warning and wham - it would hit you. I learnt to ‘roll’ with them and if possible have a short rest, but I refused to let them control my life if that makes any sense. Mentally it was a challenge for sure. For me Hydrea wasn’t a great fit and I was inching towards transitioning to PV when Pegasys (pegolated Interferon) became available on the PBS in late 2018. My Haematologist Cecily Forsyth transferred me across and it’s been a much easier journey since then. I still get some fatigue but it’s much more manageable. My council is to trust and draw strength from this wonderful site and have a haemo that knows their stuff and who communicates well with you.
Cheers
Mark.

[SilverET]

Hi Blood Zero,
I am also ET Jak 2+. Was diagnosed at 17 in the late 80’s with counts like yours. Have sailed on pretty well since then with the odd clotting adventure that has caused subsequent issues but I generally feel ok. I have reduced my hours of work a little in the last few years as I’m starting to feel the fatigue others describe. I exercise less than I used to but am trying to turn this around as I always feel better for it afterwards in both energy and mood. My goal is to push myself a bit more for the rest of this year and see how I go. The people on this forum are really well informed and helpful and sometimes it just helps to see if others are experiencing things that you are. Hope you find it useful too, I’m a pretty infrequent visitor but I still pop in from time to time.
Cheers,
SilverET

[BloodZero]

[quote="MPN-MATE Admin" post_id=937 time=1620976648

Do let me know how you get on w/ the Doctors I have mentioned to you...

....please also ask some of the other members about who they are seeing, and how that's working out for them.

...Avatar pic?
[/quote]

Hi Steve, i will do all those things you mentioned...eventually.

[BloodZero]

Nice to meet you Merry, Mark and Silver.
Those fatigue bombs One day i feel super, then bam!

[KatieB]

Hi BZ,
I am Katie and have had ET jak2.+ since 2005.
I was on HU for several years but had to keep increasing the dosage.
I became a patient of Dr Cecily Forsyth about 2 years ago. We tried Anagrelide and Busulfan but they were not successful. I am now on Peg interferon and am much better.
During the years I took HU, I did feel fatigue but all these drugs cause fatigue. However, as your body adapts, you begin to feel better. The problem seems to be, if you have to keep increasing the dose to keep your platelets down.
Welcome to the forum anyway. We are a friendly group who are happy to help if we can,

Katie

[MPN-MATE Admin]

Hey again BZ...

Excellent! As you can see for yourself... Everyone is super helpful...

An"Avatar" pic is just a Picture to add to your MATES Profile, mine is a small lighthouse for example...

I'll just pick one out for you for now, & yu can let me know if you'd like to change it later... (?)

Best wishes

Steve

[Misty-3]

Hi BZ

Sorry for this late welcome...

I am also ET Jak2+ and was diagnosed in early 2019 though my platelets were already a little high since 2016...I’m on aspirin once a day and still working full time. My platelets range from 600 to 800 and currently at 645 though 2 months ago it was 780...

My symptoms include tinnitus and getting tired easily especially towards the afternoon...not all days...and yes I noticed that I’m sensitive and cranky some days

Good to hear from you...

[BloodZero]

Nice to meet you Misty. I have tinnitus also but only on left side. I never really thought of it as a symptom of ET until your now mentionioned it.

[BCar]

Welcome BloodZero,

Although i have PV, diagnosed age 46 in December 2020, and i am experiencing a lot of the same symptoms, fatigue, muscle pain etc... I have found some light exercise in the morning keeps me going longer into the day before i hit the wall. May not work for you as you have a physical job.
I am on HU (2/3 tablets a day) and asprin, and a few others for controlling the gout symptoms.

I live near Wollongong and see a Hematologist down here, but have regular contact (SMS) and phone calls with Dr Forsyth, who is extremely knowledgable about MPNs, on the Central Coast. It was a battle at first to get the local doctors and hospital to work with me and Dr Forsyth. I had to go through my local State MP, but it was worth the trouble, as i feel i am on the right track to managing the treatment and symptoms. And i feel i am being listened to and my mental welfare is better as i am an active part of my treatment. My RBC, hermatocrit and Platelets have been stable now for a month and we are looking to transition over to Peg in a month. Have you discussed Peg, as this may alleviate your symptoms

I guess the moral of my tale, so far, is if you are not happy, get a second opinion and find the care team that you are happy with, and be a part of your treatment.

Thanks to Steve for giving me that info and guidance when i first joined and was extremely overwhelmed.

All the best,
Brendan

[MPN-MATE Admin]

Thanks Brendan...

That's precisely why we are here... Glad to learn of your progress too, and interested to understand the battles that we might all face just trying to make sure that we are indeed receiving the best treatment we are able to find...

As you say, it really is so absolutely important to find & be treated in concert w/ the correct medical team, because these MPN conditions are 'Chronic' which simply means we will most likely have them for quite some time, and we will need to have amicable relations w/ the medical fraternity, in a more than generalised sense...

MPNs are very serious conditions, and must be treated as such, & being our own best advocates is intrinsic to receiving the best possible health care that we can find... in my view...

Stay safe & well Brendan...

Steve

[Alkemist]

Hi Blood Zero and welcome to the forum.
I was diagnosed with ET in 2006 and was on Hydrea for 13 years. As time went on my platelets became variable and poorly controlled and I experienced several skin cancers. I changed over to Pegasys 18 months ago. My platelets are more stable but have not decreased as much as I had hoped. Also side effects are more problematic. However at your relatively young age, Pegasys might be the preferred option as there is the possibility of a reduction in mutant load.
Hope you are able to find a specialist who is able to advise you.
Best wishes
Allan

[Jaqi]

Hello mates, i have just joined and wanted to introduce myself.

Ive had ET Jak2+ since 2008 (i was 34 and av platelet count wad 1300). I have only started taking Hydroxy in 2019 because my spleen was growing to big.

Now on Hydroxy and Aspirin. Platelets normalized.
Platelets size and morphology not normal.

Like alot of others i experience fatigue, muscle pain and worst of all depression. I once enjoyed sports but now have severe exercise intolerance. I have a physically demanding job which i can only do part-time. I live in western Sydney.

Thats me

Hi BZ, we are almost neighbours, well, depends,Sydney is sprawling! , I’m in the Inner West and I found out I’m ‘unclassifiable’….anyway, that’s a long story but its basically MF. Just wanted to say I empathise with the depression especially, it makes Peg Interferon a no no for us which is a bummer. And the exercise intolerance sounds horrible and frustrating, what are the symptoms? Have you had a BMB?? And I also wanted to say that if you ever felt like a chat please feel free to ask Steve for my phone number.
Wishing you all the best BZ…..may speak down the line

[Warwick]

Hello blood 0 I was 33 when I was diagnosed with ET in 2003 and that stage they had no idea what caused it until they mapped the Human Genome in 2005 and then in 2006 I had the genetic test to demonstrate that I also was Jak2 positive in the early stages I was treated with low dose aspirin which stopped my headaches. In 2007 I started hydroxyurea and in 2008 I started on interferon alpha 2a which was the first generation of that injection. I did not tolerate it very well at all which gave me severe depression which I had never experienced before it also came at the time when I progressed to polycythaemia which came with a lot more fatigue. I then went back to hydrea however if you are to take this drug long term he really must be careful of the sun as I have had multiple BCC and SCC cut from my face and arms and every three months have at least 20 sunspots burnt from my face apart from the Sun spots and the occasional ankle ulcer i tolerated four hydroxyurea tablets a day for 10 years pretty well. In 2018 I started developing debilitating torso pain which resulted in 3 hospitalisations and in September 2019 bone marrow biopsies determined that I had progressed to myelofibrosis and I commenced on jakavi and two hydroxyurea tablets a day. By Christmas 2019 I did not have anymore bone pain episodes however my haemoglobin crashed to severe anaemia levels and my body started to produce blast cells which was the sign that I needed to have a bone marrow transplant. I was accepted into the bone marrow program at Westmead Hospital where they commence looking for suitable donors. Unfortunately both my sister's were not matches however I was blessed to find two unrelated matches in Sydney in the height of the covid lockdown. I was 3 days away from commencing my treatment when I received the phone call to advise that they have found numerous lumps on my lungs and that my transplant had been delayed. After numerous tests it was not until about 6 months later that they determined that the lumps were caused by blood forming cells that escaped from my marrow and we're starting to make blood in my lungs. However a course of Prednisone cleared this up and I was able to have my transplant on the 19th of February after 10 days of chemotherapy and interestingly 5 days of chemotherapy after the transplant. My donor stem cells are growing in my body as we speak and are making new blood in my body. There are a lot of good people around to give you support if you need it particularly in this group My heamotologist was Ray Mckinley a private heamotologist and physician at Castle Hill. He referred me to the bone marrow team here at Westmead Hospital. Westmead Hospital heamotology also treat public patients if thats what you are looking for. There is a team of 7 i am currently seeing Ian Bilmon.

Good luck with your journey. I continued to play soccer even in 2020 i have signed up for this year and would be happy to get to some training sessions this seasons Ask Steve excersise is key to reducing the affects of myeloproliferative neoplasms.

best wishes

Warwick

[BloodZero]

Hi Bredan,

Is Pegasy the injection? If it is, we discussed it at beginning of my treatment. In some people it can cause depression. I had suicidal depression for many year and it was a hard battle to free myself from it. I Fearful to go back there. For that reason, specialist started me on Hydroxy.

Thanks for your feedback.

[BloodZero]

However at your relatively young age, Pegasys might be the preferred option as there is the possibility of a reduction in mutant load.

Hi Alan.
Dr started me on Hydroxy because im prone to depression. She said pegasy can cause depression as a side effect. Any thoughts on that?

[BloodZero]

Just wanted to say I empathise with the depression especially, it makes Peg Interferon a no no for us which is a bummer.

Hi Jaqi
Thanks for your warm welcome. Yea, as there does seem to be many other options medication wise, i think i just have to make peace with Hydroxy and live with.
However, i do want to try a see some of the specialist that have been suggested to me.

Who do you see? Is it just the local Haemo or a MPN specialist?

[MPN-MATE Admin]

Hi Bredan,

Is Pegasy the injection? If it is, we discussed it at beginning of my treatment. In some people it can cause depression. I had suicidal depression for many year and it was a hard battle to free myself from it. I Fearful to go back there. For that reason, specialist started me on Hydroxy.

Thanks for your feedback.

Hey again BZ...

Yes, what you say about Interferon was true, & particularly so w/ the first generations. However, Pegasys' is said to be a much-improved product that does not always affect people in quite the same way... Hence, it might still be worth a trial run, (& if it doesn't stack up), you can always return to another remedy, (which Pharmaceutical companies are always happy to try to produce... ~ Via Clinical Trials etc)

There is also another drug called Anagrelide, however, it too has been reported as causing some palpitation problems for some people, but it's important to remember that even though many of us might have a similar diagnosis, our experiences w/ the treatment drugs is often quite different for each of us etc...

Anyways, I do hope that you find something that works better for you asap! Are you seeing an MPN Specialist as yet?

If not, maybe it's worthing seeing one and having a 2nd opinion... Just a thought. There's a Prof. Manoharan located at St George Hospital, and Dr Cecily Forsyth is on the Central Coast...

Best wishes

Steve

[BloodZero]

There's a Prof. Manoharan located at St George Hospital

Yea, id like to see Manoharan as he is not to far away. Does anyone have his contact details or do i just call St George Hospital ?

[BloodZero]

HI Warwick, thanks for the details on your situation. I found it informative. Do you mind if I ask some questions. Yourself or anyone else can answer if they wish. As Steve says on the forum, we should be our own advocate. Which I agree with. I like to build knowledge of the disease. Some questions are just out of curiosity too

I then went back to hydrea however if you are to take this drug long term really must be careful of the sun

I often hear Hydroxy can cause complications long term. What would you say is long term? 10years? I do spend a fair big of time in the sun. Would sunscreen help?

In 2018 I started developing debilitating torso pain which resulted in 3 hospitalisations and in September 2019

Just curious what sort of pain this was. Did it feel muscular, or deep in the bone. I get sharp pains around my body. Upper chest, mid chest, both sides of torso, upperback.

bone marrow biopsies determined that I had progressed to myelofibrosis

I heard Bone Biops are very unpleasant even painful. Was that true in your case?

Ray Mckinley a private heamotologist and physician at Castle Hill. He referred me to the bone marrow team here at Westmead Hospital. Westmead Hospital heamotology also treat public patients if thats what you are looking for. There is a team of 7 i am currently seeing Ian Bilmon.

My Haematologist seems to be on the same Westmead team as Ian Bilmon, Fiona Kwok. Though one say a week she is at Blacktown Cancer Centre. That's where I see her. Ive been seeing her for a fair number of years. I don't really like the wait and see plan. I feel like I need to be more proactive. But after reading many forum, reading documents and whatnot, its seems that's the only thing to do. I get the feeling that other Doctors will tell me the same thing. However I am leaning toward getting a second opinion.

[MPN-MATE Admin]

There's a Prof. Manoharan located at St George Hospital

Yea, id like to see Manoharan as he is not to far away. Does anyone have his contact details or do i just call St George Hospital ?

Hey BZ...

By the way, I have tried to answer your Private Message (PM), but if you cannot access it for any reason pls let me know, ok?

Also, in order to see another MPN Specialist, you must first ask your GP to provide you w/ a Referral Letter (RFL), to Prof. Manoharn located at St George Hospital, and I can give you his number: Proff. Manharan ~ P: 02 9553 0750
He is not there everyday, so leave a message if you need to call before you have your (RFL) I found him quite knowledgeable & helpful over the phone... Remember, always 'Write your important Questions down' before you talk w/ him etc...

Best wishes & let me know if you need anything else...

Steve