MATEs FORUM

Hi everyone
I was diagnosed 3 months ago ET JAK2 + …….never heard of MPN until this time.
I decided to get 2nd opinion after first haematologist prescribed HU and although he was very nice , did not explain my condition completely and on reflection I perhaps didn’t know the correct questions to be asking ! My research started at this point and iIm now seeing Prof at RNS and have had my second Pegasys this week. Started on 90mcg. Apparently I’m high risk due to my age and having had a heart attack last year.. so far so good….just headaches and tiredness but I’m hopeful this will get easier over time.
I’d be interested to know if others on Peg Int are able to tolerate it well and how long before platelets start to decrease. Any tips for diet or exercise I could be doing ? I really hate taking medication and realise that this is a lifelong regime now so I’ve got to suck it up.
I had myCovid vaccine AZ before I was diagnosed and fortunately no problems. From my reading though I’m concerned that my immunity might not be very great. Does anyone know if immunity can be tested ? Do I need a booster of Pfizer ? I’m really quite paranoid about my lack of immunity at the moment and try to keep away from shops and people as much as possible.
So much unknown about MPNs and so much learning needed by our GPs. I’d had elevated platelets for the last few years and it was overlooked or dismissed as inflammatory marker for other issues.
Keep safe everyone.
Rosie

Hi Rosie...

Firstly, wanting to welcome you to MATES, and a tad curious to know how you found us etc...? Glad you have too... welcome aboard to our rather exclusive little MPN club...

Lovely to be making your virtual acquaintance... My name is Steve, & like you I discovered quite quickly how little is apparently known about MPNs by our medical fraternity, (if at first the shock of being overwhelmed by having a rare blood cancer were not enough, then I/we uncover that very few know of MPNs, their treatments & MPNs specialists in Australia are even more rare than MPNs themselves, in my view...)

Not a great place to start my MPN education, on the one hand, however & on the other... "Time quickly becomes of the essence does it not?"

That discovery in 2016, (prior to this COVID-19 pandemic), was the main reason why I wanted to start this website for other people like me in Australia, who needed to learn about what MPNs are. So first the website, then with a group of other MPN patients 'All over Australia' I /we formed this "MPN-MATE RESEARCH FOUNDATION" as Australia's first fully-patient led MPN FORUM website. We are now a duly registered Australian "Not For Profit" Health Promotion Charity, with a mandate to Fundraise in order to contribute to making MPN Research happen here in Australia.

Rosie, you asked some really pertinent questions concerning matters relating to how to stay healthy, & while I may not have all of the answers, & I am happy to share a little bit about myself & my MPN... & importantly, what I have discovered is working for me thus far...

I am 62; Post ET / Myelofibrosis (MF), my Driver mutation is CALR+ Type 2, (where your Driver is JAK2+), I also have been tested for the other 'High Risk' mutations & found to have one that is called ASXL1+, (which is generally thought to have a poorer prognosis). I also have (acquired?) Von Willebrands Syndrome (which simply means that a protein in my blood makes my Platelets even "Stickier" than they already are). Which contributes greatly to having what are known as Transient Ischemic Attacks (TIAs). TIAs are known as minor brain strokes, (I've had a few smaller ones & a couple of larger Stroke attacks too), & I 'm now looking at having to take Statins too... (?)

My own research has taught me that whenever my Platelets exceed the magic Million marker, my TIA risk becomes a high-wire tight rope walking exercise, in which I try to find ways to reduce my Platelet levels. HU was just too difficult for me, & found myself quite unable to function while taking it. I also tried Interferon for a while but couldn't tolerate that either & after my Bone Marrow Biopsy (BMB), showed heavy Grade2 fibrotic bone marrow scarring my diagnosis was changed to MF, & shortly thereafter I started taking Ruxolitinib (Jakavi), which helped return to me a much greater sense of "Quality of Life". My symptom burden also became far more manageable, & I suddenly found myself wanting to try to do more exercise. Now of course none of this happened exactly over night, however, I gradually learned that the best diet for me is largely what I describe as "Anti-Inflammatory".

Rosie, my diet consists largely of the following:

* Plant based (loads of fruit & veg)
* Unprocessed (virtually impossible to know what is in processed foods & SUGAR is highly inflammatory)
* No alcohol
* No soft drinks
* No added SUGAR in my drinks of any kind (Black coffee & green teas...)
* Very little dairy
* No meat or animal proteins (or very few in my case - some seafood on occasion)
* Loads of pure water (& sparkling mineral water too)
* Raw Beetroot puree is excellent for fighting fatigue & lowering Blood Pressure (BP)

I have learned that by gradually increasing my exercise levels, that I can have more energy at my disposal & less fatigue...

I started cycling, small distances at first... However, that is also how I now have started Fundraising too... (Turning a Negative into a Positive)
I recently cycled 600kms in 5 Days from Sydney to Coffs Harbour. Here's a Link to a small montage of that event, just scroll down to see the pictures:

https://www.mpn-mate.com/giving-for-mpns/

Rosie, as to your questions concerning COVID-19 & vaccinations, all I can say at the present is that they are extremely good questions to be asking, of course...

With my Blood clotting experiences & Strokes of late, I am not very keen to take the AZ at all... I also have a few scientific 'Peer-Reviewed" reports that do say that people w/ a suppressed immune system will likely produce less less if any anti-bodies than those whose are not, but hopefully you / we will still produce some... (?)

Other members here on MATES will hopefully come along soon to also reply to some of your questions, & speak of their own experiences also in regard to CV-19 & vaccination etc...

Rosie, you will also notice that many of the Members here have a picture Avatar attached to their name so I shall also find one for you too...

Once again welcome aboard, & I hope to speak w/ you more again soon...

We did have CAFE Catchups, before CV-19 came along, & for a while we were doing ZOOM Cafe Catchups, which I hope to have another one soon if you'd like to join us, just let me know...

Happy to provide you with my contact details, which I shall email to you shortly...

Let me know if I can be of any assistance at any time Rosie... & in the meantime, please stay safe & well...

Very best warm wishes...

Steve

PS: One last thing Rosie, before I forget something else... Please always remember to check the SUBSCRIBE box in the top Left-Hand corner where the REPLY POST button is also located. That way you will be notified whenever anyone Replies to your Posts... Steve

Hello Rosie,

My name is Katie and I have had ET jak2+ for 16 years. Probably longer but diagnosed in 2005.
I take Peg interferon 75mcg each week and seem to be doing well. It took a bit of time to reduce my platelets but they are within range now. I have been on Peg for over ayear as HU caused a leg ulcer.

Steve is a great help when you need information and I, for one, am eternally grateful he set up this site. Our ‘catch ups’ are great......when we can have them!

My consultant is Dr Forsyth and after speaking to her the other day, she was very anxious I should have my Covid vaccination. I was unable to have it when it was first offered as I was not well. Dr Forsyth is an expert in the field and explained that Covid is a dreadful virus for an MPN patient to contract. My first vaccination is booked for next week.

Please let me know if you want to chat and Steve will pass my phone number on.

Best wishes
Katie

Thanks for replying Steve and Katie.
Steve I came across this site as I was searching for more information on this diagnosis- and so happy that I did.
It makes me realise just how much there is to learn and understand about MPN.
This is really a strange journey to be suddenly thrust on, particularly when I have other medical issues. It seems like can there possibly be anything else go wrong.
My husband is absolutely wonderful in his ongoing support and care of me. As we are in lockdown again I am very grateful that we have each other.
The diet info is great Steve and I will take on board your suggestions although I definitely need my one G n T at night !
I have not had a BMB…..do you think this is necessary ?
I’ve read about others who have been diagnosed with ET but in fact have already progressed to MF.
My haematologist is Prof Chris Ward and I will certainly be raising this question with him at my next visit.

Best wishes to all and please keep safe.
Rosie

Hey Rosie...

Your doctor is the best one to advise whether or not a BMB is required. However, it sought of depends on you too... Are you suffering w/ many sypmtoms right now? If not, it might not be required... (?)

Having a BMB is usually a simple matter, and whilst a tad uncomfortable for a couple of days Post BMB, it's usually not too painful at all... (Usually using an inhaler & local anaesthetic), I have had two thus far, & no problems w/ either of them... I was suffering w/ other symptoms and pain, & so the BMB was insightful in my case...

It really is up to you & how you are feeling... Perhaps wait a while, & when & if your symptom burden increases... then talk w/ your doctor about it then (?)

Katie, who has also said hello, is lovely, and sees one of the very few true MPN specialists in Australia, a Dr Cecily Forsythe. There are a few MATES members here who all see Dr Cecily, & all of them will give you glowing reports about her, & her MPN knowledge etc... Dr Forsythe is located on the Central Coast of NSW, (Here's a Link ~ (Australian Listing of MPN Specialists) https://mpnforum.com/list-hem/

Anyways, do stay safe & well Rosie, & let me know anytime if you ever need any assistance...

Very best wishes to you & your hubby...

Steve

Hi Rosie

My name is Linda…welcome to MPN Mate!!!

I have ET and Jak2+ diagnosed in 2019. I was devastated when I was told my condition and I did not know anything at all about it. My 1st Haem sent me for BMB and then told me to take HU or interferon (did not have a clue about them) but she was kind to explain them. I was not happy though to take them. I did not have much symptoms before, my MPN was discovered because of my annual blood test - platelets quite high. Anyways she then told me to take 2 aspirin. I was on it for months. My symptoms started with slight ringing in my ears (tinnitus) and tiredness. My haemoglobin is fine but my ferritin was very low so my GP gave me some iron tables. Did a lot of research though I had been told to be careful reading them…then I found out from other MPN patients that I was the only one taking 2 aspirin a day…I decided to have a second opinion…I told my 2nd Haem and he agreed to lower the dosage to 1 aspirin and to watch and wait..

While all these things were happening I had other medical conditions including breast DCIS, went under surgery and radiation. This happened also in 2019. I’m also seeing a respiratory specialist for some lung nodules that were discovered also on the same year and I’m being monitored for this…

I try to eat healthy but fail sometimes. I love my food…I try to walk at least 5,000 steps a day but again fail sometimes But I pray a lot which keeps me going!!!

I then went to see a 3rd Haem to check if there are other things that I can do with my condition…he did some coagulation test for blood stickiness and he said that the result was good so I stay with my 1 aspirin a day…no need to change the medication and he told me to eat red meat at least twice a week for my iron. My symptoms are still the same but I also have sinus problems (not sure if this is due to MPN) which sometimes is worse especially during the afternoon…I feel so much pressure in my sinuses. I’ve seen an EENT specialist and did some tests and CT scan and she said that there was nothing wrong with my nose and my ears. So I thought that this maybe related to my MPN then…

I had my 2 doses of Pfizer vaccine as both my Haems advised me to take them though if I didn’t have my condition I would have opted to wait…

BTW, I have abdomen ultrasound every year to check my internal organs especially the spleen…(including kidney, liver, etc.)

So I’m seeing 2 Haems at the moment Dr Ian Bilmon and Prof Manoharan…one I see every 3 months while the other one every 6 months…my platelets are erratic ranging from 600 to 800…

I’m still working though just recently went to part time…

Sorry for the long story…

MPN Mate is a good place where people can ask and exchange notes…Steve for one is very helpful and always there…thanks Steve!!!

Keep safe Rosie and take care!!!

Linda

Hi Rosie,
Welcome to Mates, I am ET, Jak 2 +, MF & PV with AXSL1 mutation, like you I quickly learned my elevated Platelets had been overlooked sadly, however neither did I have symptoms...

My story started in March 2018 & yes it’s a real shock to say the least..
I had virtually just retired from a life of Nursing RN..
Within 7 weeks after BMB I knew I had MF & that graduated to what I have listed..

This Forum has a wealth if information and nobody better than Steve...

We have been friends outside of the forum arena and I had the privilege to watch him build this forum for the folk of Australia...

He is well versed in his own dietary needs and if he can help anyone, he does just that..

I live in the UK & recieve Care from a Professor Claire Harrison at Guys London..

I too started out on HU but truly didn’t agree with me, but we are all different in our needs & should always be guided by our Clinicians..

However Mates will support you and folk will give great advice on the “ living with MPN’s” none of us wish to be on this journey but here we are..
With adjustments to our lives and the various coping strategies we get there and live with this ...

I now take Ruxolitinib - Jakafi and life is so very much better for me personally...

One issue which is clearly a great worry for all of us is C-19...
Well I am currently staying with my daughter whilst we are between homes..
My daughter is just recovering from Covid, naturally I and my family were worried about me...
I have had two (2) shots of Pfizer and prayed that I had not been exposed..

We hadn’t been kissing or hugging each other due to her work environment and some folk being rather careless with all the measures we need to take to avoid catching Covid..

So I guess I was lucky, this is day 16 for Sarah and throughout this ordeal I have tested Negative...
I have practiced good hygiene all the touch spots in the home cleaned with Dettol or Bleach water & my daughter has stayed in her room..
We communicate by text or through a closed door she has her En Suite Bedroom thus we have managed...
But still believe in using Dettol throughout the home as routine.
Food I left on a tray by her door & everything on it went into a bowl of soapy water & Bleach to clean off prior to the Dishwasher..

On entry to her room to help her during the first week when she was really unwell, I gloved up and Double Masked to try & remain safe whilst helping my loved one...

I have possibly been lucky, but as a RN I believe it’s good infection control that protects us...
I used go to the Supermarket until this, but I try to avoid groups of folk who gather together..
I always wear a mask and clean my trolley..

Enough on Covid simply take care of yourself gather as much information you can about MPN’s and stay positive ...

This illness can be managed and there is a great deal of knowledge and support here ...
Every day you will find ways to cope, keep asking questions and keep posting here..

I have made some wonderful friendships with folk around the world and nobody understands better than those of us living with our various types of MPN’s...
I wish you well and once again keep positive..
All the Very Best to You
Maria

Thank you everyone for your wonderful support.
Steve, you really are a font of knowledge on MPN …….thank you.
I have heard about the doctor on the central coast and I will consider an appointment.
Prof Ward lists his among his specialties MPN and as he is at Sydney Uni and the Kolling Institute I will delay this until my next visit with him. Our fault really isn’t it - having something that’s not common !
Maria, you are certainly dealing with a lot. I do hope your daughter is well on the road to recovery.
Had she been vaccinated ? My daughter is also an RN but fortunately in a senior managerial role at a very large public hospital here in Sydney. This means no hand on work and for that I’m very grateful but it does mean the possibility of exposure as she sees a lot of nursing staff. I’m unable to see her and my grandsons which is making me very very sad . I’m certain there are many others in a more lonely situation so doing my best not to dwell on it too much and hope that we can get out of lockdown very soon.
Stay safe everyone,
Much love Rosie

Hi Rosie
Welcome to the forum and apologies for not being here to welcome you sooner . I have Et Jak2+ diagnosed in 2015. My haem at the time was retiring and basically just said take an aspirin once a week and you will be fine. Unfortunately I didn’t really research MPN’s until after I had a cerebral venous sinus thrombosis about a year later following a couple of trips abroad and being a bit too relaxed about taking the aspirin. After that I started seeing a haem at the public hospital in Perth (I’m in south west WA) and I commenced Apixaban (blood thinner) and Hydrea.

Since that time I have had a kidney removed due to cancer, developed psoriatic arthritis and had my gallbladder removed amongst other things. I stopped taking the Hydrea in October 2019 and my platelet levels have remained in the 400’s. I’m just on a watch and wait at the moment and have six monthly Telehealth appointments with the haematology dept. The last doctor I spoke to talked about my PV which doesn’t instil much faith and my GP who I’ve been seeing for about four years , last week said to me “oh I’ve been reading about your JAK 2 and it’s a cancer” to which I looked in amazement and decided I better get a new GP!

Anyway still managing to work full time and as I have six kids (grown up and only two at home now) there is always one of them who needs help and takes my mind off the health problems.

We are also very lucky on the COVID front here in WA. I have just had my second Pfizer dose yesterday and hoping to have some immune response. I did get “covid arm” ten days after the first jab but otherwise ok.

Stay safe and well everyone
Regards, Merry