MATEs FORUM

Hi Everyone,

My name is Carmel, I'm 38 with a 10 month old son, and I've recently been diagnosed with MF from having high platelets (740). I'm scared as I want to see my son grow up and I'm not really sure what the future holds for me. I've read some people can live a long life with this disease and its completely variable. I'm waiting for my NGS results to come back, to see what risk category I fall into. My situation is complicated as I don't have a spleen (removed when I was 5 for another blood disorder), so I've had a CT/PET scan to see if other organs are enlarged. I've read the previous posts and I'm going to try to get an appointment with Dr Forsyth as I'm based in Sydney. I guess I'm looking for hope and advice, I'm very overwhelmed right now. I want to be strong for my son and partner but I feel so lost.

Thanks
Carmel

MESSAGE from MPN-MATE Admin:
Carmel, hope you like your Avatar pic above? If you have another you'd prefer, I can put that up for you instead. Just let me know ok? . Steve

Hey there Carmel...

Firstly, welcome to MATES, you'll soon find that there are a quite a few of us here that are also seeing Dr Cecily... So well done you for actually finding yourself a true MPN Specialist, (for our very rare blood conditions are on par), w/ MPN Specialists in Australia, there are so very few... (more about this point later)

My name is Steve, I am Post ET / MF, and I have been managing quite well on Ruxolitinib (Jakavi) since 2017... One of our other members, Warwick), recently underwent the Allogenic Stem Cell Transplant (ASCT), and is still battling the aftermath which is now 12-18 mths Post ASCT. However, another member, Chis from the UK, (who joined our virtual Cafe Catchup on Sunday evening last), is completely recovered...

One of the most important things to remember Carmel, is generally speaking, MPNs are "slow-burning" Chronic illnesses, and a great many people live almost normal lives... However, much of this is dependent upon the patient too, and how well they are able to manage their MPN...

In my case, (if I may share w/ you for a moment)... In 2016, I had just completed one BA and well into my 2nd, when I finally landed my dream position of working in International Relations /Overseas Aid in SE Asia... I was so happy... BEAMING! Finally, all my hard work & planning all seemed to be falling into alignment. That Friday after receiving my news, I decided to use the Medical Ctr I was taking my Octogenarian mother to, to have my final requirement fulfilled before flying out in the next week, (a Standard Medical). Late on the following Sunday evening, I received a call from the Chief Medical Officer from the DFAT program, who then advised me of some inconsistencies in my Bloods...

In hindsight, I guess I knew something was amiss, but I just thought my heavy fatigue was just because of my studies & domestic situation, (caring for my aged & immobile mother...) However, I would learn that was not so...

First, I tried to find another culprit for my Bloods, (denial), and after I had exhausted all my alternate theories, I finally began to accept my diagnosis. Then I became quite despondent, (even depressed). For suddenly, all my study & dreams seemed to have ended...

About a year later, I did the Taylor Swift thing finally, "Shook it all off" & decided how I might better survive this illness...

One of my first startling observations was that very few people seemed to know much at all about MPNs... Particularly here in Australia. There are quite a few patients here who have been told by their respective GPs, that they might do better seeing a therapist etc... That level of ignorance, made me angry and eventually, I started this website FORUM with a few other members, we then became a Registered Australian "Not For Profit" health promotion charity...

In April last year, I cycled from Sydney to Coffs Harbour, (600kms in 5 Days), to raise Awareness about MPNs in Australia, both to the general public & the medical fraternity. WE also contributed to MPN research via the Funds raised... YAY!!! .

Yes, I still have many aches & pains, (maybe even more now, cycling's hard work but I am living and enjoying everyday the best that I am able... I turned 63yo just recently Carmel...

Carmel, have you had a Bone Marrow Biopsy (BMB) as yet? If so, what were your results? A scale from 0-3 is used to describe the 4 levels of possible scarring to the bone marrow (fibrosis). Mine was initially Grade2, however, my last one showed it may have reversed course a tad, back to Grade1. I am probably due for another some time soon... But at present, I just keep moving forward, trying to stay as fit & healthy w/ my 'Anti-Inflammatory' diet & exercise as consistently as I am able...

Reducing bodily "Inflammation" can really help w/ MF...

By the way, my Blood Platelets are always between the 700-1M range. At around the 1M, I become a tad concerned about having a Transient Ischemic Attack (TIA), which is a minor brain stroke. I've had a few of them already... That's why finding ways to manage your Platelets is so essential.

When someone is as young as you, 38yo, often all that is needed to manage the Platelets is "Low Dose Aspirin". Once past 50years is when other drugs usually become contemplated. However, everyone is just a tad different... and some do start on Ruxolitinib earlier if they do have MF...

Ruxolitinib, basically gave me back my life, almost...

Carmel, there are many other MATES members here too... They will come along & say hello in due course...

Please remember to tick the SUBSCRIBE button above, so you'll be notified when people reply to your Post etc. Ok...

I will find a picture for your Avatar shortly...

Carmel, it can be so completely overwhelming when we first become diagnosed... and that can cause such anxiety & apprehension about the future...

Please try to remain very patient w/ yourself, (& others who cannot yet understand), what you are going through...

Rest assured, all of us here do!

We do have a Virtual 'Cafe Catchup' usually on Sunday nights every so often, our last was Sunday past, the next will be about 6 weeks from now I guess...

My advice Carmel, try to stay calm, worrying does not help us at all... By the way, I have also undergone NGS, and learned I have ASXL1+, which they say usually denotes an adverse prognosis... But I'm still here...

Which "Driver Mutation" do you have Carmel, is it JAK2+? Mine is CALR+ Type2... They all stimulate the same result really, an over abundance of unwanted cloned mutated blood cells...

Learning more about MPNs is what helped me come to terms w/ it all eventually... and this FORUM was made for MPN patients like us, as was the website where there is a plethora of MPN information available...

MPNS What Are They?
https://www.mpn-mate.com/mpns-what-are-they/

On that "Drop-Down" menu, you shall also find Topics on the three classical known MPNs:

Myelofibrosis (MF)

Essential Thrombocythaemia (ET)

Polycythaemia Rubra Vera (PV)

Hopefully, that will help you glean a tad more about MPNs...

Carmel, yes, I know... It's all a great deal to take in... but just take your time... Stay calm, and please ask as many questions as you like, and I / we shall all do our very best to answer what we can, from our "Lived experience" perspective...

Remember, MPNs are "Chronic" illnesses, and most of us will be here for the duration of what approaches normal longevity...

I hope my response has been helpful, and if you need someone to actually talk to, both myself & Katie, (another MATES member), will be happy to provide our numbers to you by email if you desire them, just let me know...

Katie, is also a patient of Dr Cecily too...

Once again Welcome to MATES Carmel, and I am sure that shortly you'll have many of the answers you are seeking...

Very best wishes...

Steve
MPN-MATE Admin

Welcome Carmel,
So sorry to hear about your diagnosis. I can’t imagine what you’re going through being faced with this scary scenario at such a young age. The support you will receive here is real and helps to “normalise” what you are feeling. Steve is a font of knowledge and is very happy to share his wisdom.
Very glad that you are going to consult Dr Cecily Forsyth. She was my 3rd haematologist- the first 2 basically had little comprehension of MPNs !! It really pays to be your own advocate and to learn as much as you can about these rare blood cancers. (I’m PV JAK2+)
I live lower North Shore and mainly travel to Central Coast to see Dr Forsyth but last consult was video link and this also worked well. She always contacts me after blood counts and if I have any issues follows up very promptly.
I am so grateful for the info I received on this forum with regards to changing my doctor.
I wish you all the best and hope you are not too overwhelmed by this situation.
Lots of love and support,
Rosie

CarmelC wrote: ↑Tue May 31, 2022 10:35 am Hi Everyone,

My name is Carmel, I'm 38 with a 10 month old son, and I've recently been diagnosed with MF from having high platelets (740). I'm scared as I want to see my son grow up and I'm not really sure what the future holds for me. I've read some people can live a long life with this disease and its completely variable. I'm waiting for my NGS results to come back, to see what risk category I fall into. My situation is complicated as I don't have a spleen (removed when I was 5 for another blood disorder), so I've had a CT/PET scan to see if other organs are enlarged. I've read the previous posts and I'm going to try to get an appointment with Dr Forsyth as I'm based in Sydney. I guess I'm looking for hope and advice, I'm very overwhelmed right now. I want to be strong for my son and partner but I feel so lost.

Thanks
Carmel

MESSAGE from MPN-MATE Admin:
Carmel, hope you like your Avatar pic above? If you have another you'd prefer, I can put that up for you instead. Just let me know ok? . Steve

Hi Carmel and welcome,
So very sorry to hear of your devastating news. I think Steve has covered pretty much everything but I too am seeing Cecily. In March, following the start of the pandemic, I was diagnosed with MF, after she, rightly so, suggested I definitely have a bone marrow biopsy (BMB).
Prior to that at RPA (where they were absolutely abysmal) the haem gave me 4 minutes of his time for an ET diagnosis and put me on Hydrea (HU) meanwhile telling me it wasn’t CHEMO. I went elsewhere when I found out….visited a couple more unimpressive haematologists.
Then gave up and went to see Cecily at her Gosford practice. Her care, efficiency and thoroughness astonishes me and it appears she’s very involved in the haematological community. I’ve seen her name pop up, she’s out there hosting, sharing, learning from what I can gather. And she gives me a $$ break as she is private which is very kind of her! She knows I have a limited income.
Anyway, I did have some bone marrow scarring (fibrosis) and was then diagnosed with MF, It can be a hard one to pin down and as annoying as this phrase will become, it is true that ‘it’s different for everyone’. But the main thing is, and here is the ‘hope’, I hope, is that I’ve always been naturally wise about what to put in my body and what not to, so I had an aversion to having to take ‘therapy’. Because of my severe fatigue she wanted me to go on Rux (Ruxolitinib/Jakafi)
I did so much dam research! It took up my whole existence, well it would wouldn’t it, when you think you’re going to die? But I can smile as I write that now.
So, knowing all the symptoms, I was not convinced I had MF and asked for a second opinion on the BMB which I had done at St George ‘hospital’, I think. She obligingly sent it off to Western Australia and the results were in my favour. I was also impressed to learn that the woman who did the second opinion is very involved in reading blood, I think it’s her forte. So my diagnosis was downgraded back to ET! Like I said, it can be a bit of a grey area and I do have some fibrosis but I was ultra happy when Cecily told me the pathologist/oncologist? said it looked more like ET, my abnormal blood cells and the cobwebby matrix (forgotten its name now ) was much less pronounced than for MF. After how I felt about MF, I felt like ET was a walk in a park, so my heart goes out to you. But Steve is testament as to what can be achieved given some positivity and MOVING! . Don’t let it grab you and sink you like it did me.

So anyway, my fatigue got worse, I don’t know if it was the vaccinations (like post viral fatigue?) or not, but I was bedbound for most of the day, every day, like I had a lead blanket on me. It may very well have been psychological. After Cecily felt that she has done her work for me and was hinting that I go Local, I did just that and went back to RPA to be monitored while trying Pegasys (Interferon). I didn’t like it at all but the worst was a really bad reaction at the injection site, absolutely unbearable itching but I stuck it out for six weeks. The haematologist suggested I have a ‘drug holiday’ for 3 months, which was more than fine by me, but it sounded a bit ridiculous and lax as I’d only tried one drug and for six weeks. So I’ve just been on the aspirin for the past 3 or 4 months, my platelets were 750, too.

I have since moved to the Central Coast, near Gosford, not to be near Cecily but because it’s something we have longed for. Serendipity. I like to think.
We’ve only been here 2 1/2 months but since we arrived my fatigue has been just as it was before I was diagnosed (probably had it for 4yrs prior) I just get tired at the end of the day pretty much. There is so much to be said for Mind Over Matter. When I thought I had MF I even felt twinges of pain in my spleen area. I’ve never had an enlarged spleen. I do feel very blessed, MF is a scary diagnosis. And it makes you, misguidedly, think, I wish this was just a regular cancer…so you take the chemo and come through or you don’t.

So, my advice is, as hard as it will be, try to just accept what is happening and enjoy your life because no one knows how long you’ve got left and also get that BMB, request that specialist in W.A.
Another thing, when I was glued to the Internet researching and talking to US and UK people (where they actually have MPN specialists) on the UK forum ‘MPN Voice’ I realised the bottom line is there’s only so much that can be done, (and in Aus) and that a lot of that is up to you and the other is to choose which Meds, it may take trial and error but don’t be afraid of any of them until you’ve tried them. Ha! I need to listen to my own advice.

I actually have my new appointment with Cecily tomorrow! I have no idea where my platelets will be, I just pray they've stayed at 750. I so don’t want to go on any meds, Life is good now, but I also don’t want to have a stroke or a clot or a bleed and they’ve been creeping up these past 2 yrs. and I’m due for my fourth vaccination next week, aargh. But he has some definite advice, try and wait three months between each vax to get those special memory T cells up to speed.

I hope I have helped in some small way and given you some hope. I look forward to hearing how you’re going, please keep us up-to-date.
Wishing you all the luck in the world, love. XO
Jacqui

P.S I think the adrenaline from moving and the joy of nesting is finally slowing down a bit now so I’m starting to feel a bit more fatigued but if I push through it’s amazing what I can do, rather than sinking into it, and exercise is the best !
If you’d like to chat or ask any questions please feel free to call me, Carmel, it’s so much easier to talk than type .

MPN-MATE Admin:

Thanks for Posting Jacqui, and I am sure Carmel appreciates you doing so too. However, we don't put numbers or contacts up on the FORUM because there are a lot of scammers "Out there" that try to attack public FORUM style websites. Happy, to provide anyone's numbers to anyone should anyone wish to pass them on to someone else etc. Alternatively, you can send them to Carmel if you like by Private Messaging (PM). Otherwise, I am always happy to pass on contact information for anyone who wishes to do so etc. Thanks Jacqui.

Thank you so much for your replies Steve, Rosie and Jacqui. Your stories gives me so much hope and are inspirational. They are very much needed for someone who is just learning about this illness!! I’m getting better each day but it has been overwhelming, as I feel like my life has been robbed from me. You have given me hope that I can dream of watching my son grow up… We went through IVF to get him, so I’m not going to give up the battle to see him grow up.

I guess I was lucky as my haematologist at NSPH (who looked after me during my pregnancy), actually bothered to investigate my high platelets further. I saw two haematologists about 5 years ago and they told me I had nothing to worry about as my platelets were elevated because I don’t have a spleen….. I’m not sure if it’s always been MF, or if this could have been prevented from treatment years ago. I need to get my results to see if I’m PMF or ET/MF, I think my haematologist didn’t want to overwhelm me further. From what I understand my platelets have been on the rise for the last 20 years. I have the JAK2 mutation and my fibrosis is at Grade 2. Steve I would love to know how you reversed it, just exercise and diet? Or do you think the drugs helped as well? I was very fit and healthy, that stopped once I started IVF. I’ve been getting back into the gym and walking as I need to lose the weight for my wedding in October. So you have given me inspiration to do more if I have the potential to reverse my fibrosis. Jacqui I only just had my BMB done at RNSH, I’m not sure I want to do it again anytime soon… from what I understand they sent the results to John Hunter Hospital in Newcastle. I’ll ask Cecily if its worth doing it again.

They have advised low dose aspirin for now, and its a watch and wait until I need drugs. I was on a Facebook Myelofibrosis chat group, and the admin lady suggested I speak to the haematologist about starting Pegasus as it can help in the early stages of the disease. Has this ever come up in this forum? I do get tired however I always put it down to having a 10 month old and before that a very demanding highly stressful job. Now I know it was probably this disease. I have bone pain at the moment, but I also think it could be psychological from knowing I have MF.

My haematologist is going to refer me onto someone at RNSH who specialises in stem cell transplants, as her focus is really pregnancy (sorry I can’t remember his name). I think its a good idea to talk to him, if I ever require that in the future however it doesn’t sound like he is a MPN specialist. From what I’m learning and what you are all saying, it’s important to be treated by a MPN specialist and also know about clinical trials that are happening if the drugs we have on PBS fail.

I would love to join the Sunday chats when they happen, and very happy to chat further as it helps to talk to people who understand what I’m feeling. Thanks again for your support and for starting this forum… you have given me some hope which is what I desperately needed right now.

Also Steve, the avatar picture is wonderful

Good luck with your appointment Jacqui, I hope the platelets are down!

CarmelC wrote: ↑Tue May 31, 2022 9:33 pm Good luck with your appointment Jacqui, I hope the platelets are down!

Hi again, Carmel,
Firstly, it seems very odd that you’ve been diagnosed with MF without having seen the results from your BMB.
I have a feeling you have ET, and you know how I feel about that (btw, I’m JAK+, too). And you might be right about that ‘psychological’ bone pain.
Don’t Dr Google, too much, honestly, it’s really not worth using up your precious time on it, just let it lie, be patient and leave it all up to Cecily…you’ll always have autonomy with her as well. She’ll explain everything with total clarity. I needed to wait a month before I got into see her initially, do you have an appointment yet? She’s always ultra busy!

Wow, you’ve been through a lot already. I’ve picked up, from out there, just how hard it must be having to rely on IVF and that it’s more common than one thinks.

Secondly, thanks, Carmel, I didn’t ask Cecily and she didn’t tell me (or forgot to?). We had so much ground to cover, it had been a year since I’d seen her. I was with her and her coworker, nurse, Jackie, for an hour. Jacqui is lovely and is available on Wednesdays at the practice should you need to speak with her.
Cecily really is an amazing doctor, it was so great to see her and to be under her care again!! She is SO interested and caring and thorough. I’m actually having a bit of a laugh to myself now, as I remember when I first went to see her I would get so frustrated at how she would speak to me- so slowly and she’d over articulate every word. I don’t think she’s used to Sydneysiders and she’s more used to having elderly patients…it only comes from a place of caring, I’m sure. Now she knows me, it’s not like that at all now.

I didn’t feel the need to ask because the bottom line is that I do need to go on meds as I’m high risk. And must focus on getting my cholesterol down some and keeping my blood pressure normal.
Because I have some fibrosis and reticulin (cobwebby matrix) she could work it so I could be prescribed Ruxo (usually only reserved for MF patients) but I’m going to try the Pegasys again. There are studies showing that it may very well help with progression of the disease and it’s not as toxic as Hydrea. I did notice that the last couple of times I injected that the itching wasn’t as severe. And before I’d mentioned that, she said that the side effects can fade after 6-8 weeks, plus, I was putting ice on it too, which she said would have only irritated it. She has also prescribed me antihistamines, for both day and night and low dose steroid cream. I’ll inject before bed and take a sleepy antihistamine after having put the cream on, so fingers crossed!
And so we are going to “tiptoe in” with Peg again but starting at one injection a fortnight rather than weekly. I was so apprehensive about injecting mainly because I was so worried about bacteria and handling the needle, I wasn’t worried about the actual injecting at all and I had a great local nurse who taught me and did it for me the first few times. But it’s easy, another thing C said today was to not use alcohol swabs as you’re also injecting that possible irritant. The first time I came across that was when I got my first Covid vaccine and right after I realised he hadn’t swabbed me, I was like ‘HEY’, lol, but apparently our skin is friendly enough to a tiny sterilised needle puncture.

Hope I’m not overwhelming you with loads of information but I thought in case you need to weigh up meds I thought I’d share my experience.

I mentioned you to her today and that you were coming to see her. You could ask her if she thinks it was a good pathologist that read your BMB but it may not be necessary to go down the second opinion line yet. You also need to see how your scans go.
So happy to hear that you are feeling better about the whole situation!
If you’d ever like to chat on the phone please feel free, Steve has my number.

FYI, I have learnt that when writing on this platform it times out, so you can lose what you’ve written. Now I always copy it to my notes before I submit. Invariably I need to login again. But maybe that’s just because my replies are so long, haha.

Love,
Jaq

Hi Carmel,
My name is Kelly, I was diagnosed with ET and PV In 2016/17
I have recently had a few other things going on but been very thankful to be able to have some sound knowledge and much need support through this group and MPN voice.
You can learn so much from these forums and catch ups
It also helps to talk to people who understand and can answer questions you will have.
Please reach out, we are all in this together





NB** - MPN-MATE Admin

Hi Kelly, my apologies, as I just noticed that you didn't have an Avatar pic... Hope you like the one I have selected but if not, there are a few others there to choose from, pls let know. Thanks Kelly. Steve

Hi everyone,

Sorry for the delay in response, we've had the day-care bugs and have all had a bad cold over the last few days. It's been rough!

I just wanted to say thank you Jacqui and Kelly for responding. It's so nice to have support from people who understand. I'm learning so much from you all.

Jacqui - Thank you for mentioning me to Dr Cecily. I'll def ask her about my BMB, I have been reading that starting interferon early is a good option for people who are newly diagnosed however I'm not sure if I qualify for that. I'll make an appointment with my GP so I can get a referral to see her ASAP.

I'm looking forward to the next catch up so I can meet you all.

Thanks
Carmel

Hi Carmel.
My name is Mark I live in the lower Hunter and have been diagnosed with ET since 2014. I was lucky to be referred to Cecily in the first instance and have been with her ever. She’s brilliant in a word. I ET and for the last 4 years I’ve been on pegolated interferon (Pegasys). This drug is fantastic and over this time I have pushed out my injection frequency to monthly now. This assists with side effects management and like Steve said, it’s given me pretty much a normal existence. This forum provides wonderful support as all its members are walking the same journey and totally understand! So welcome.
Cheers
Mark

Hi Carmel
I live in Sydney and was diagnosed with ET in 2006 after elevated platelets and a BMB. For a year I was on aspirin only but as platelets increased I started Hydrea. Over the next 13 years the dosage was increased but my platelets were not well controlled. I also suffered side effects of numerous skin cancers (BCCs and SCCs) and mouth ulcers. When Pegasys became available on the PBS I started that. Two and a half years later my platelets are only slightly elevated (in the 500s). I also have itchiness and a few other minor.
symptoms but generally speaking I am going well. At your age I would think Pegasys would be the preferred option as there is a chance of remission. Although it seems daunting, you can see from the positive stories and encouragement on this site that you have every chance of a long and enjoyable life so try not to worry too much. I try to forget about my condition on a day to day basis and for that reason only occasionally check in to the forum
All the best
Al

Thanks so much for the reply Mark. I get the rest of my results tomorrow, I'm so scared as I can't handle anymore bad news. Once I have everything I will be making an appointment with Cecily! It's great you are doing well, I hope that will be the same for me as well.

C

Hi Al,

Thank you so much for telling me your story, I really hope that is the case and I get to live a long life with my family. Everyone here has been so lovely and has some positive stories so it's been giving me a lot of hope.

Thanks
Carmel