New Haematologist

[Misty-3]

Hi all,

It has been a while since my last post.

I was diagnosed with MPNU JAK2+ in February 2019, I declined to take hydra when my Haem told me to do so...I was mid fifties and my symptoms include tinnitus and easily getting tired and breathless when doing activities, I also suffer from sinusitis but I’m not sure whether it’s got something to do with my MPN, My iron was very low so had to take iron supplements but my Haemoglobin is fine, my platelets are around 700 currently, they go up and down... I was then told to take 2 aspirin a day, but now reduced to 1 (thanks to lovely people like you and to fora like this!)...I was told that I am ET by my current Haem(2nd), my Haems are all good but maybe less experience when it comes to MPN...so hard to find an experienced one especially here in Sydney...there is only one Haem in Sydney that is on the list provided by MPNForum..

Anyway, I did meet with that single Haem on the list, he seemed knowledgeable on MPN...he is now sending me for blood test (a lot) with whole blood platelet aggregation test which measures the stickiness of the blood...not sure if anyone has heard of this? Apparently this test is only done in one hospital here in Sydney...

It seems promising but I thought to share this with all of you...I’ll see how I go and will post updates.

Take care all!!
Misty

[MPN-MATE Admin]

Hey Misty...

Thanks so much for Posting about your MPN experiences thus far...

Yes, finding MPN doctors here in the Land of Oz, really is not so easy... Unfortunately, I believe it's a type of an 'Economy of Scale' problem; meaning that we have such a small population and our MPNs are really so rare, but made more so by our tiny population... Not enough incidence, and no funding into research... But that is part of what we are trying to change here too...

I am glad you have found your doctor at St George / Kogarah, and I really do hope that he proves to be more than useful. We really need far more MPN Specialists here in Australia.

I am curious Misty, is the Blood Test he's arranging for you to do with Von Willebrands Syndrome (VWS)?

As you might recall, I am Post ET / MF, and my Platelets are always running between the 700s - 1M, and causing me all sorts of problems in the process, and one of those being that when Platelets spike up around the 1M marker, one can develop acquired Von Willebrands Syndromne (VWS). Our blood is full of proteins and if one or another 'Factors' are missing then more serious clotting problems can emerge, which in turn can lead to other devastating events...

I have already had two (2) TIAs, (minor brain strokes), and now a more recent attack that caused a residual paralysis of my left side, and my left leg in particular. For almost two (2) weeks, I had to resort to walking with a 'Stick'... I recall my apprehension quite vividly as I quietly asked myself a question:

"Is this going to be my physical life from now on...?"

Fortunately, with some physio' and slowly rebuilding my leg muscles, I am now almost completely back to normal... And just as well, as our Fundraiser "CYCLING FOR A CURE" for MPN Research commences from APRIL 10-17. Riding Seven (7) Days straight from Sydney to Coffs Harbour... I can't wait, it will be very difficult I am sure but all of 2020 stopped everything that we were trying to achieve. Here's a Link Misty if you want to learn a little more about it...

https://www.mpn-mate.com/sponsors/ (And if you scroll down you can Download the Brochure as a PDF file...

Anyways, please do keep us all Posted about what it is you discover with your new doctor, and if he's a 'Keeper' I am certain that others will soon be wanting you to share his details too...

Stay safe & well Misty...

Best wishes

Steve

[Alkemist]

Hi Misty
It's good that you seem to have found a more promising haemo. Hope the results of your blood tests throw further light on the best way to treat your condition. I was interested in your comment that your platelets are up and down - by how much? I was on Hydrea for several years and at times my platelets varied wildly, sometimes by several hundred over a couple of weeks. This was later diagnosed as' Hydrea induced cyclical thrombocytosis'. I have since switched to Pegasys and my platelets are more controlled. It might be worth asking if Pegasys is an option for you?
Keep safe and healthy
Allan

[Merry]

Hi Misty. Thanks for sharing. I was interested to read about the platelet aggregation test - I don’t think I’ve had one of those... I had a venous thrombosis some years ago - probably caused by “sticky” platelets as mine haven’t been above 650. I stopped taking HU over a year ago and my platelets have stayed around 450 since then. Is there any reason why they wanted you to take Hydrea? I thought it was only prescribed for high risk or over 60s. Best of luck with the new haem. Merry

[Kinsale]

Hi Misty. As the others have noted, having a rare blood cancer means that for us it is essential that our haematologist is fully up to speed with all aspects of MPN’s as well as being a good communicator and a good listener. I live in the the city of Lake Macquarie just south of Newcastle and my haematologist meets all of the criteria listed above and I highly recommend her. Her name is Cecily Forsythe and she has rooms in north Gosford as well as Kanwal near Wyong Hospital. She is definitely worth contacting and discussing your situation and possible Telehealth appointments. Cheers. Mark

[KatieB]

Hi Misty,

Welcome to the Forum. You will enjoy all the friends here.
I too have ET and have had tinnitus for years too. I Idiagnosed in 2005 and I am still going. Like Mark, I am a patient of Dr Cecily Forsyth. I can thoroughly recommend her.

All best wishes,
Katie

[KatieB]

Hi Misty,
I do apologise for the mistakes on my message to you. I was hurrying as I know these messages time out after a few minutes.

My name is Katie and I have had ET for many years having tried most of the medications available. Now on Peg interferon and feel like a new person.

Hope all goes well for you. Keep us posted.

Best wishes
Katie

[BCar]

Hello Misty,

Glad to hear you have found an MPN specialist. I had to go the Central Coast, from Wollongong to see an MPN Specialist. But i so glad i did, she changed my diagnoses from ET to PV and chnaged my medication straight away and now i seem to be reponding well.

No one has mentioned the stickyness test to me, but i will ask my doctor next time we meet

I hope all goes well for you

Best wishes,
brendan

[Misty-3]

Thanks all for your replies...

The blood test is called “Whole blood platelet lumi-aggregometry” which is used to identify patients who are at risk for thrombosis or bleeding attributable to platelet hyperactivity...My haem said he wants to know first whether my current medication is enough to prevent thrombotic events...apparently this test is only available in St George hospital in Kogarah...

I am currently taking 1 aspirin 100 mg...this was my decision back then as I was very hesitant to take any other drugs...though maybe this time I won’t be able to dodge it if indeed it will go that way then I will definitely consider pegasys/interferon...it’s working nicely for Allan and Katie...

So Merry, are you not taking medication now after HU?

My platelets started at 570 upon diagnosis though looking back at my old blood tests, it was already 485 in 2016...went creeping up to 890 in late 2019, then to 585 in mid 2020...and from then started climbing up again slowly..700 last Dec blood test.

I was also given Dr Cecily Forsyth’s name but quite far...I’ll see how I go with the new haem but will definitely go to her later...Mark and Katie are in good hands and so with Brendan, it’s good you found a good haem too...how was your diagnosis changed to PV from ET?

My first haem told me to take Hydrea because even though I’m in my mid 50’s she thought that I belong to high risk...I take medication for high blood pressure and low dose for cholesterol...but I said no...then she found another publication journal about treatment so she put me on aspirin 2x 100mg...then reduced to 1 now...

I haven’t asked the current haem about VWS Steve but I will next time we meet... good luck on the ride!!

Will update you all...take care everyone...

[MPN-MATE Admin]

Hey again Misty...

Firstly, a BIG public thank you, because although I do not know for certain... I believe that you have recently generously contributed to our Fundraiser Ride very shortly set down for APRIL 10-17, 2021 Start date ~ Thank you so much MIsty...

Yes, I shall be really interested to learn about what the results of your blood “Whole blood platelet lumi-aggregometry” TEST indicates etc?

Be interesting to hear what his take is on 'Acquired Von Willebrands Syndrome - VWS)' too...?

As many of the others here have already mentioned to you, it does seem that 'Pegasys'' is working really nice so far for everyone who has commenced with it thus far....

On that list of MATES members all currently making successful Pegasys' reports are : Allan, Brendan, Katie & Mark... A couple of other members Michelle & Garry, also from Sydney are seeing Cecily too...

Zoom works well too don't forget if the drive is too far...

Anyways, if all's working really well with your new haematologist, that's all that really matters...

Once again, thanks for Posting about a new Sydney Based (MPN specialist), and best wishes under his care & treatment, & please do stay in touch Misty...

Stay safe & well...

Steve

[Merry]

Hi Misty. Great to hear back from you. I stopped the hydrea late 2019 as I had been diagnosed with psoriatic arthritis and begun taking methotrexate for that. Methotrexate can also reduce platelets so I stopped the hydrea as it just seemed like too many pills for me and I wanted a break from the hydrea anyway. As it turned out, the methotrexate didn’t agree with my liver and I have not as yet been able to find a tolerable treatment for the arthritis. I have spoken to my haem a couple of times since stopping Hu and he seems happy as long as my platelets don’t go too high. They have stayed around 400-450. I also take a blood thinner, Apixaban. Hope everything goes well for you and you are able to get some good treatment outcomes. Merry

[Jaqi]

Hi all,

It has been a while since my last post.

I was diagnosed with MPNU JAK2+ in February 2019, I declined to take hydra when my Haem told me to do so...I was mid fifties and my symptoms include tinnitus and easily getting tired and breathless when doing activities, I also suffer from sinusitis but I’m not sure whether it’s got something to do with my MPN, My iron was very low so had to take iron supplements but my Haemoglobin is fine, my platelets are around 700 currently, they go up and down... I was then told to take 2 aspirin a day, but now reduced to 1 (thanks to lovely people like you and to fora like this!)...I was told that I am ET by my current Haem(2nd), my Haems are all good but maybe less experience when it comes to MPN...so hard to find an experienced one especially here in Sydney...there is only one Haem in Sydney that is on the list provided by MPNForum..

Anyway, I did meet with that single Haem on the list, he seemed knowledgeable on MPN...he is now sending me for blood test (a lot) with whole blood platelet aggregation test which measures the stickiness of the blood...not sure if anyone has heard of this? Apparently this test is only done in one hospital here in Sydney...

It seems promising but I thought to share this with all of you...I’ll see how I go and will post updates.

Take care all!!
Misty

Hi, Misty, it’s Jaqi here, I’ve not posted here about myself yet as I’m too busy to talk with a group atm but I have an apt with Manoharan on Tuesday as I’m newly diagnosed with JAK2 ET so would love to speak with you, especially to know what he said about the HU, which I too am reluctant to ingest! I will ask Steve if he can hook us up and if you’re okay with that. I know that the private messaging on the forum is not working atm. Hope your appointment went well and you’re feeling confident. Best wishes J

[Misty-3]

Hi Jaqi
My appointment went well with Prof Manoharan. He seemed well informed about MPN so I will stay with him.
I was diagnosed with JAK2 ET in February 2019, I was told by my first Haem to take HU but I declined. I was then placed on aspirin 2x a day. I am now on 1 aspirin a day because when I spoke to others with the same blood disorder everyone was on very low dose...so I talked to my 2nd Haem, so now I’m currently on 1 aspirin a day. Prof Manoharan wanted to check whether my current medication is enough considering thrombosis which is the greatest concern for ET...he sent me to this aggregation test...it’s done via blood test...my results thank God came out that aggregation not detected so therefore I can stay with 1 day aspirin. I also do not experience many symptoms. I just get tired sometimes and I have tinnitus. Prof said that HU is one of the medications given if platelets are over 1M and if aggregation test detects that platelets aggregation is present.. which means higher risk for thrombosis....according to him he doesn’t prescribe HU straight away as he wants to check first whether it’s necessary which I like. So he will monitor...according to Prof, he has other ET patients and there is one that has been with him for more than 10 years now...let me know if you want to contact me. Steve has my email address so maybe you can send me a message there...take care!

[Jaqi]

Hi Jaqi
My appointment went well with Prof Manoharan. He seemed well informed about MPN so I will stay with him.
I was diagnosed with JAK2 ET in February 2019, I was told by my first Haem to take HU but I declined. I was then placed on aspirin 2x a day. I am now on 1 aspirin a day because when I spoke to others with the same blood disorder everyone was on very low dose...so I talked to my 2nd Haem, so now I’m currently on 1 aspirin a day. Prof Manoharan wanted to check whether my current medication is enough considering thrombosis which is the greatest concern for ET...he sent me to this aggregation test...it’s done via blood test...my results thank God came out that aggregation not detected so therefore I can stay with 1 day aspirin. I also do not experience many symptoms. I just get tired sometimes and I have tinnitus. Prof said that HU is one of the medications given if platelets are over 1M and if aggregation test detects that platelets aggregation is present.. which means higher risk for thrombosis....according to him he doesn’t prescribe HU straight away as he wants to check first whether it’s necessary which I like. So he will monitor...according to Prof, he has other ET patients and there is one that has been with him for more than 10 years now...let me know if you want to contact me. Steve has my email address so maybe you can send me a message there...take care!

Thanks for this info, Misty, this is all very reassuring as I was terrified for a while last night when I read a reply from a caring soul on the other forum begging me to take the HU. I will stick with my intuition, though, I just get the fatigue (and hot feet sometimes, if that’s a symptom?) and its been months since my other symptoms.
Are you ‘Misty’ on the other forum and may I ask your age? Oh, and does he bulk bill??
Thanks again, Misty, it sounds like yours is very manageable, I do hope it stays that way permanently.

[Misty-3]

Hey Jaqi, I felt the same when I was told that I had ET/JAK2 and that I had to take HU...it works for a lot of people I heard but not to some. It has different effect on people. I was 55 when I was diagnosed in 2019. With Prof M’s fee, I paid the whole fee (not that high) and I claimed from Medicare online (very quick and easy) so the out of pocket is not that much. I changed my diet...stay away from fatty and sugary food though I still treat myself once in a while. No more soft drinks for me, less ice cream, chocolates and cakes (but I do have some occasionally ). I do veggie and fruit (usually celery, carrot, apple, and beetroot and a little ginger) juicing at least 2-3 times a week. I stayed away from meat but my iron became deficient that I have to be on iron tablets for a while. Now my iron has gone back up and I have to now eat meat at least twice a week. I take vitamin supplements. I try my best to stay away from stress...and be happy...am still working full time and am active in church. And I walk, try to do more than 5,000 steps a day even walking around the house.
Oh, I’m in the other forum too but I haven’t visited it for a while now...so many helpful and caring people there. It was actually there that I learned from others about the aspirin dosage.
Take care Jaqi and hope everything goes well..let’s stay in touch...

[Merry]

Hi all and welcome Jaqi You will see my response above regarding Hydrea. I also have JAK2 ET diagnosed at 51. Let me know if you have any other questions. Best Regards, Merry

[Jaqi]

Hey Jaqi, I felt the same when I was told that I had ET/JAK2 and that I had to take HU...it works for a lot of people I heard but not to some. It has different effect on people. I was 55 when I was diagnosed in 2019. With Prof M’s fee, I paid the whole fee (not that high) and I claimed from Medicare online (very quick and easy) so the out of pocket is not that much. I changed my diet...stay away from fatty and sugary food though I still treat myself once in a while. No more soft drinks for me, less ice cream, chocolates and cakes (but I do have some occasionally ). I do veggie and fruit (usually celery, carrot, apple, and beetroot and a little ginger) juicing at least 2-3 times a week. I stayed away from meat but my iron became deficient that I have to be on iron tablets for a while. Now my iron has gone back up and I have to now eat meat at least twice a week. I take vitamin supplements. I try my best to stay away from stress...and be happy...am still working full time and am active in church. And I walk, try to do more than 5,000 steps a day even walking around the house.
Oh, I’m in the other forum too but I haven’t visited it for a while now...so many helpful and caring people there. It was actually there that I learned from others about the aspirin dosage.
Take care Jaqi and hope everything goes well..let’s stay in touch...

Hi Misty, that fee and medicare rebate sounds the same as what Cecily Forsyth’s receptionist said, so that’s very doable and good news.
That’s great to hear that you’re doing the right thing regarding your diet and exercise, ha ha even the house steps, Apparently even just standing is using muscles so there you go. Luckily for me diet is one area I don’t need to change as I’ve always placed importance on nutrition and ‘real’ food. Interesting about the meat though, I eat it once a week or sometimes even 10 days but just before I got diagnosed I was eating heaps, thinking it was low iron that was the cause of my fatigue, even though I never ever have low iron on my blood tests. I guess maybe everyone is different. Just remember to always have vitamin C with any of the veggie forms of iron and that’s especially true for legumes/pulses...just in case you didn’t know or forgot .

Thanks for all your tips and sharing your positive lifestyle, it all sounds very wise. Yes, let’s stay in touch, all the best to you Misty.

[Jaqi]

Hi all and welcome Jaqi You will see my response above regarding Hydrea. I also have JAK2 ET diagnosed at 51. Let me know if you have any other questions. Best Regards, Merry

Hi Merry, I just wrote a long response to you but when I went to submit it I lost it because I wasn’t logged in. So I will have to get back to you in the near future but thanks much for the welcome and best of luck to you.
Warm regards, J