ET in Australia: Hi, diagnosed last week with ET... - MPN Voice

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ET in Australia

Solitairebtb
Solitairebtb

Hi, diagnosed last week with ET. I'm 47 and work full time. Still undergoing some testing to determine treatment but as I've had no clotting issues fingers crossed it will just be aspirin and possibly something to get my iron levels up. Had issues with migraines, headaches and my vision not being very good even though optometrists said my prescription hadn't altered. Also very tired but I just assumed that was life in general that was causing that. My neck gets very red and mottley, my dr thought it may have been rosacia but creams didn't work so he suggested we work out my platelet issues in case I is related. Has anyone else had that type of thing?

Thanks

Tamzin

22 Replies
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Hi Tamzin, I too have been newly diagnosed with Essential Thrombocythemia (- for genetic markers) I also have as secondary myelofibrosis. I was diagnosed about 3 months ago and am currently treated with aspirin, folic acid and b12. Like you I have had terrible fatigue & vision issues. No real headaches but such brain fog that is until I started the aspirin. I also feel at times like my hearing is going, my fingers and toes do go numb a bit and tingle. Oddest symptom for me was having one finger swell up painfully for about 12 hrs. No neck blotches, but I have read others that have gotten rashes.

I guess this is one exclusive club none of us wants to belong to, but I feel very optimistic that with treatment symptoms will improve and what doesn't I can manage to live with. Emphasis on the fact that this may affect our lives but barring a catastrophic event should not shorten it.

I'm very glad to have found this forum and look forward to the support, reality check and advice I may glean from those more experienced with our situation.

I hope someone here can better address your neck blotches. For now I wish us both luck navigating through this

Cmg5935

Solitairebtb
Solitairebtb in reply to Cmg5935

Thanks for the reply!

What do you mean by "for genetic markers". Sorry this is all a bit new so still getting used to the lingo. It wouldn't be very common to have secondary myleofibrosis as well would it? Do they know what caused it and do they not really treat that either?

I agree the forum seems to be great. I felt a little unsure when I left the specialist but I suppose I wait for the bone marrow biopsy and spleen ultrasound etc and go from there.

Cmg5935
Cmg5935 in reply to Solitairebtb

Hi, I can understand your confusion. Being that this condition is rare it can be challenging to find one source for information. I find that I have been needing to piece much of this together myself.

When you have the bone marrow biopsy they will be not only studying your marrow and platelets to confirm your diagnosis, but checking for the genetic markers found in 80% of those diagnosed. They are JAK2 and another I cannot remember the name of. I tested negative for both so I am even rarer, lol.

The second condition was caused by the ET. Not everyone develops it, but not uncommon. I'm still learning what it means for me.

The us of spleen is to check for enlargement. My spleen was fine.

As for the cause... well that seems up for debate. Our condition though not curable it is treatable. With 2 sisters having breast cancer I actually feel like I'm getting off easy. ( one is now ca free, the other is terminal)

What I can tell you is that you did not do anything to cause this. As we age some genes can mutate and this is simply the result for us.

Hi Tamzin. I'm Mark and I too live in Australia (NSW south of Newcastle). I agree with CMG5935, this forum is a lifesaver - particularly for those of us over here. I actually heard of it from my haematologist and that is the first point I wanted to give you. You need to find a good haematologist - one who will be open and honest with you and who will journey with you, empowering you with knowledge along the way. Have you spoken to your GP re a referral? If you live nearby I am happy to provide you with the name of mine. The MPN.Org. UK website is a great resource re conditions, treatments etc.

Re me - I'm 59 and was diagnosed 3 years with ET and jak2+. At first I was on aspirin only and was classed as low risk. Symptoms included crippling fatigue at times and i had headaches with increased in intensity in June last year and I have been diagnosed with Primary Cough Headache in November last year - but there is no clarity as to whether there is a direct link with my ET. One of the MRI's that I had for my headaches showed some ischaemic changes in my brain (due to minor blockages ) and so I have commenced taking Hydroxycarbamide in November and am probably now intermeadiate risk (no clotting events so far ). For me this journey has been made much easier due to the fabulous haematologist who has provided me with info and wisdom, but who has left the final decision to me each time.

Mark

Hi Tamzin. I posted my reply on CMG5935's reply. Sorry about that.

Solitairebtb
Solitairebtb in reply to Kinsale

Thanks guys.

I have the JAK2 gene but assuming the BMB is to see where things are at. CMG I hear what you are saying with getting off easy. There is quite a cancer history in my family as well so I'm quite positive. Very sad to hear about your sisters, that must be tough.

Mark I'm in regional south east QLD but have been referred to the Wesley in Brisbane to a guy there. I must admit my first impression wasn't brilliant, he was very matter of fact and basically said there was nothing I could do and any symptoms I thought I might have probably had nothing to do with ET... so I felt a little like he wasn't taking it seriously but I suppose he sees it all the time so no big deal to him. I suppose I was hoping that there was a reason for the vision and headaches etc and that I could look at getting some relief with lowering platelets, or thinning blood etc... I'll see what my BMB brings next week I suppose.

Cmg5935
Cmg5935 in reply to Solitairebtb

Tamzin, personally I think your issue with your doctor are as they are with even my hems/onco. They don't see this every day and though they can diagnose it they don't really know enough to adequately advise us. My dr has referred me to a research specialist hems/oncologist. I'm hoping to gain more information from her and will certainly share anything I might learn.

Statistics here in the USA are that outbof a population of 320 million I am one of only 78,000 with this rare blood cancer. This is why I am so thankful for this forum. My dr had me looking at other possibilities for my debilitating exhaustion, such as depression. I knew I was not depressed. In this forum I have read time and time again about how ET has caused them crippling fatigue. I feel so much better knowing I am not alone in this and to understand that ET is the cause.

Mark is very right that you need to find a specialist that is properly versed in all aspects.

Side note regarding the bmb. Many only use a local anesthetic that helps with topical pain of needles. I plan for future biopsies to sufficiently drug myself before going through it again. Talk to your dr about options.

Christina

Solitairebtb
Solitairebtb in reply to Cmg5935

Thanks Christina.

So a haematologist doesn't necessarily know much about MPN's? I haven't seen my GP yet. Once he got my JAK 2 result he referred me to Brisbane straight away, but I assumed the dr he sent me too was a specialist in MPNs but maybe not.

With the BMB I'll talk to the Dr about possibly taking some additional pain relief, thanks for the heads up.

Cmg5935
Cmg5935 in reply to Solitairebtb

Please don't misunderstand me. I'm not saying that your hematologist/oncologist doesn't know anything. What I'm suggesting is that ET is not common, and that we need to know that our choice in physician is well versed not just in treatment but all aspects. My lead dr thankfully is referring me to an additional specialist that does research on ET. But truth be told my lead dr was not very helpful when I described the odd symptoms I was experiencing. She didn't seem to feel they were relevant to the diagnosis. Yet in my own research and review of stories here my symptoms line up closely, and clearly are a result of ET.

I'm hoping the new dr will be able to give me a clear picture of what has been going on with my ET, ways to mitigate symptoms, treatment options-perhaps a clinical trial, and what I can potentially expect down the road.

I hope I've explained myself better. I don't want any miscommunications on something so important to all of us on this forum.

Best

Christina

Solitairebtb
Solitairebtb in reply to Cmg5935

Thanks Christina, that makes sense. Hopefully you get some joy with your new Dr.

Kinsale
Kinsale in reply to Solitairebtb

Tamzin. I agree with Christina. My haematologist is involved in research as well as seeing patients. So when you see your GP, make sure they refer you to one that is actively involved in research into MPN's. Another option is that in April this year there was a one day MPN conference in Melbourne. Patients from across Australia, NZ, Canada and the USA attended. It was great. The organisation that coordinated the was the MPN Alliance Australia. Go to leukaemia.org.au and search for the name above. Contact them and they may be able to provide the name of a haematologist in your area. I understand that the next conference in Oz will be on the topic of MPN's and Women. Hope this helps.

Mark

Solitairebtb
Solitairebtb in reply to Kinsale

Thanks Mark. I'll have a talk to my GP when I have finished my other tests etc and I'll also get in touch with MPN Alliance Australia, that is really helpful.

Mazcd
MazcdAdministrator

Hi Tamzin, welcome to our forum, we can all completely understand how you are feeling, I would urge you to read as much as you can on our website mpnvoice.org.uk and have a look at the videos as well, they are very informative. You can also find information about the mutations, JAK, CALR, MPL etc

mpnvoice.org.uk/about-mpns/...

there is also a very good organization in Australia for MPNs The Ruby Red Foundation

rubyred.org.au/

best wishes, Maz

Solitairebtb
Solitairebtb in reply to Mazcd

Hi Maz

Thanks for the links that is great, I'll do some more reading.

Kind regards

Tamzin

Hey Tamzin... :)

My name is Steve (Sydney). I am 58 & was originally diagnosed w/ ET (CAL-R mutation), in May 2016. However, I later learned that I had suffered from a TIA (Trans Ischemic Attack or minor Brain Stroke), in May of the previous year (unfortunately it went undiagnosed at that time...).

Tamzin, I believe that in my own case, my vision issues were directly related to my having had a TIA. Hence, please do not leave it in the hands of a medico who is actually ignorant to what Myelo-prolifferative Neoplasms (MPNs) actually are...

... with all due respect to the medical fraternity, it has been my experience thus far (particularly in Australia), that many GPs know little or nothing of these MPN conditions. Even many Haematologists know little about these MPNs. These rarer blood cancer conditions are really only now becoming more recognised in our contemporary world.

I have spent a great deal of time endeavouring to research why any of us become afflicted, and it seems more than likely that we humans are continually exposed to toxic chemicals & radiation over the course of our normal lives. Hence, most cancers are generally detected in the latter years of our species, obviously w/ a variety of exceptions.

My subsequent BMB, indicated a Level 2 Grading of scarring to the bone marrow, and as a result my diagnosis was reclassified as early MF.

I am now on Ruxolitinib (Jakafi), my platelets are still Very high (750-1M - is the usual reading). Even though my treatment generally allows me the ability to live & manage my condition more effectively. I am still struggling from time to time... I am simply not ready to give in at all just yet.

I am endeavouring to exercise as much as I am able, and to continue to try to study everything and anything that I deem as a fascination...

Tamzin, please do avail yourself of a 2nd & even a 3rd opinion...

There is an exceptional MPN specialist on the NSW Central Coast. Her name are details are as follows:

Dr. Forsyth, Cecily

Hematologist in North Gosford, New South Wales

Address: 14-18 Jarrett St, North Gosford NSW 2250

Phone: +61 (02) 4324 8488

Best wishes Tamzin. Stay in touch and please feel free to contact me privately at anytime if I can be of any further assistance to you.

Have an excellent evening...

Steve

PS. I believe that unless it is an emergency there is a bit of a wait to gain an appointment. Unlike the USA & the UK, we have so very few true MPN specialists, unfortunately for us...

Hi Steve

Thanks so much for your message.

Sorry I would have replied last night but I got a migraine which is a concern as I used to get them only every 4-5 weeks or so but now I've had two in the last 4 days.

I have read quite a bit that exercise helps. I admit I sit at a computer screen up to 12 hours a day (sometimes more) and my exercise (except at weekends when grandkids are around) is non existent. So I think I really need to step things up in this department.

I appreciate the contact you have given me there. I'll arm myself with a bit more knowledge and then go from there.

Take care

Tamzin

Hey Tamzin... :)

You are most welcome of course. Please feel free anytime... is good...

Steve

(Sydney)

Hi all

I'm over in WA. I was actually diagnosed two years ago at 51 yo with ET JAK2 and another rare blood disorder MGUS. I also have Graves disease (hyperthyroid) since age 45. Always healthy before that. The haemo who diagnosed me said not to worry about the ET or the MGUS, just take aspirin twice a week and have a blood test once a year. So two years on (about a month ago) after suffering vision problems, strange rashes, itching, recurring shingles and then loss of feeling in one arm, I went to the ophthalmologist thinking the vision problems were related to Graves eye disease and after a scan learnt I had a blood clot in my head. I'm now on Hydrea and Apixaban and not feeling too happy. I've seen another haemo in Perth (the one who diagnosed me has retired....) but I didn't really learn much I hadn't already found out online and a BMB has not been mentioned. At least this forum has provided me with some answers - thank you all and love and best wishes to everyone. Keep on keeping on..... :D

Solitairebtb
Solitairebtb in reply to Merry6

Hi Merry

There seem to be many complications and other conditions that can be associated with this disease. Your haemo sounds like mine... but I will give him the benefit of the doubt until I have all the other tests completed and know where I'm actually at.

Take care and please keep in touch.

Kind regards

Tamzin

Hi Merry6,

I am so sorry to learn that you had to discover for yourself the ignorance that exists in Australia, (in particular), when it comes to MPNs. Hopefully now, you are finally receiving all the assistance you need...

However, and in the mean-time, we have the people and the resources of MPN Voice...

I have been toying w/ the idea of creating an Australian forum for quite some time... Just so that we might initiate meetings and catch-up get-togethers for those who might feel so inclined. In time, who knows... perhaps it might also assist MPN sufferers 'down-under' in the antipodes... (?)

Best wishes Merry6

Steve

Merry6
Merry6 in reply to socrates_8

Hi Steve, thanks so much. I hope I'm receiving the right treatment too - especially with having the MGUS which can progress to Multiple Myeloma. I wonder about the effect that Hydrea may have in progression of the MGUS but its looking increasingly like its a "nobody knows!" sort of question.

An Aussie forum sounds great. Being in WA it would be hard for me to catch-up in the east being a single mum working full-time but I would be happy to help in any way I can.

Kind Regards

Merry

socrates_8
socrates_8 in reply to Merry6

Hey again Merry... :)

There is also an Aussie 'Webmail' list, and I believe that they do have catch-ups near Kings Park in WA... I will find the email address and send it through to you shortly...

Have an awesome day Merry... :)

Steve

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