Hi again Helen...
Glad you found the FORUM Posting not too difficult, and especially so now that I helped a little in the background with the website issues etc...
Sadly, we don't receive any government funding hence our web tech' is a tad antiquated, but we make do the best we can...
Helen, hopefully some of the others will be along to welcome you in due course... However, most of them are still trying to work, and they can be a tad slow in their individual response times... We are not a large community but we are growing all the time.
Nevertheless, I am sure that our website also has plenty of very useful information concerning all of the MPNs
The following Link –
MPNs What Are They? –
https://www.mpn-mate.com/mpns-what-are-they/
This article helps to describe a little about MPNs, in a more generalised sense, and the
'Drop-down menu' goes into a little more detail concerning each of the three (3) main MPN classifications: I.e.
* Essential Thrombocythaemia ET
* Polycythaemia Rubra Vera PV
* Myelofibrosis MF
There are a great many interesting observations that tend to materialise over time with MPNs, and some times just coming to terms with the illness can take a little while in itself, hence trying to remain patient with oneself may prove useful, it always does for me...
Many people who develop an MPN can often share very similar biomarkers, and yet they can also experience quite a diversity of reactions to one treatment over that of another. Which tends to make us all just a tad unique in that sense...
... Nevertheless Helen, and naturally because you and I do share some of the same diagnosis, I am hopeful that my sharing some of my experiences might aid you in your MPN journey a little too.
So just briefly at first, I am also Post ET / MF, however my 'Driver' mutation is CALR type2 (whereas yours is JAK2). I also have what is referred to as a 'High Risk Mutation' called ASXL1 (which is often reported as a harbinger of a poorer prognosis). To add to my little MPN party tricks, I also have Von Willebrands Syndrome (VWS), which can mean too much OR too little of the proteins that our blood needs in order to clot & or flow correctly.
My initial diagnosis (Dx) 2016, came after a coincidental blood test revealed some anomalies. Tests were positively repeated, and I soon commenced my learning curve concerning all things MPN with a renewed sense of gusto. At that time, I still had access to University libraries & all of the Online Journals. So after learning that very little information was generally available out there, (within the broader Australian community). I set about first educating myself... As in my instance, gaining this Dx actually completely changed the trajectory of my life... and that was very hard for me to accept...
For me personally, I am the type of person who needs as much information as possible in order to feel comfortable. Hence, turning my research skills to all things MPN seemed a no brainer for me... However, not everyone feels that way ... Many people prefer just to continue their lives as if nothing at all has transpired, while others can become quite sad and remorseful asking themselves questions like: "Why me?"
In the end Helen, we must all learn to become our own best advocates, and eventually uncover what might become the best course of action in our own individual circumstances, in my view...
When first Dx, it was classified as ET because my Platelets were at circa 1.8Million. I had already experienced my first Transient Ischemic Attack (TIA - minor brain stroke), that initially went misdiagnosed. First, I was put onto an oral chemotherapy drug known as Hydroxycarbamide "Hydroxyurea" or (HU). My system simply could not tolerate that drug very well for very long at all... I had developed really nasty mouth ulcers, internal bleeding of the portal vein, and bleeding gums during that 6-8months of using HU. Then there were all those unwanted and nasty side-effects like relentless extreme fatigue, (Brain Fog), I could barely remember anything at all, (I was zombie-like), burning sensations in my legs, hands & feet... Always felt nauseous and the abdominal pain kept growing in intensity... Afterwards I was switched onto one of the earlier versions of 'Interferon' Alpha B (I think ?). That had the effect of reducing my platelets really well, and for the first time they fell to 500s, (which they didn't manage to do on HU). However, the associated depression that came with that drug for me was intolerable, I'd even viewed ephemeral thoughts of suicidal ideation... My abdominal pains grew worse, and eventually I was sent for my first Bone Marrow Biopsy (BMB), which revealed fibrosis scarring of Level2, and the HRM of ASXL1. My classification was then changed from Intermediate 1 to Intermediate 2 & we commenced the Tissue Type (TT) search for a donor. My siblings were of not a 10/10 match, and while a 'Matched Unrelated Donor' (MUD) was being sought I commenced taking Ruxolitinib 25mg b/i daily.
Almost instantaneously... the Fog started to clear, my slightly enlarged spleen returned to a more normalised size, and just generally... I really started feeling almost completely normal again... Astounding really... I am always fascinated by chemistry and how certain introduced artificially created elements can produce such a profound diverse reactions...
In any event Helen, all of that was quite some time ago, and I've been successfully treated by suppressing my immune system utilising Ruxolitinib for those past circa 7 years. I was 57yo at Dx turned 65 last May... and right up until just before May 22nd, (when I was run down by a 4WD 91yo driver), I was possibly the fittest I had ever been in quite some time... Sounds all quite bizarre really... Still nursing my (5 fractures) to my pelvis atm. However, I have now recommenced exercise on my Spin bike just recently too... On Friday last my specialist gave me the all-clear to start cycling again, ("...slowly please..." he said").
When I first commenced Ruxolitinib, I almost instantly began to gain unwanted kgs... Hence, I made a conscious effort to completely change my diet, and commenced cycling for exercise. At first I still recall barely being able to ride between 3-5km. Now, according to my GPS device I've almost clocked up 60,000Ks, and I was averaging approx' 1,000km per month.
However Helen, I won't even suggest that was ever easy to achieve, because it really wasn't! I dedicated myself to making myself well, and found that the more that I'd exercise the greater the endurance capacity I was creating for myself to aid me with my longer rides...
Helen, there was and still are many days where I really do just need to stay in bed... But mostly I just keep trying to push past those ill feelings, bought about by my MPN extreme fatigue.
The down side of being on Ruxolitinib, is very much about getting the dosage right. Mine still fluctuates a tad (roller-coaster ride), so I keep a closer eye on my trending blood results and change my dosage as & when required...
Living with an induced / suppressed 'Immune System' means learning how to live with 'Anaemia' because that's what the ruxolitinib induces, and that's why it's so important to try to stay on top of what my optimum Rux' dose should be at any given time etc. (My Bloods are done every 6-8 weeks apart)
Being our own best self-advocate, is also a ceaseless but imperative task, and I quickly had to learn that those around me really do not completely fathom how completely vulnerable people are to all sorts of unwanted infections, when they are forced to live with a suppressed Immune Systems. To all intensive purposes, people viewing us from an exterior perspective cannot see or comprehend what it's like for people suffering with an MPN, in many respects it might be better known as an 'Invisible Illness"...
When most people look at me, they rarely see a sick person at all... everyone just assumes that I am fine... Unfortunately, that is not my reality, and I must guard myself with great and unrelenting care, otherwise... I will contract even the simplest of bugs that can make me terribly ill... (gastro can be a nightmare)
I continue to live as if COVID is brand new... Whenever I am indoors in public company, I always where my mask. Always manage my sanitary observations with complete diligence... In the end, I find that it's just better for me that way...
As always I have rambled on for far too long... My apologies Helen... I hope I have not added to your discomfort at all... To me, as mentioned earlier, knowing and understanding my illness makes my management of it so much easier...
Helen for me, the first 12 months were the toughest for, having to learn how to come to terms with my Dx, I had to transverse a few different stages back there. However, after my equivocation ended, I was then able to decide how I would now choose to move forward again, and that certainty made my life purpose so strong, with a renewed vigour I didn't know I possessed... It's all a part of this great journey we call Life Helen...
So much more to talk about I am sure...
Oh, but just one final piece of information for now... After about a year on my new anti-inflammatory diet, and being consistent with my cycling exercise regime, I underwent my 2nd BMB, and to my absolute delight I was to learn that I was once again Level 1 Fibrosis scarring of the Bone Marrow, and reclassified to 'Intermediate 1'.
In my view, all of this was mainly due to my taking back, whatever I could concerning the control over the destiny of what remains of my life, and the path I was now embarked upon...
Hope to meet you at one of our meetings soon Helen... where you will meet some of our other female members too... Katie, Merry, Wendy, Carmel, Kelly or
Anita...
Warwick is also one of our committee members who underwent the ASCT procedure a tad over three (3) years ago now, hence, he's very useful for any questions you may have in that regard too...
Chat more soon...
Best wishes
Steve
PS. Helen just a last moment piece of Post Writing advice... The website can & will time you out if like me you can take some time to publish your Posts. Hence, Maybe first compose them in either an email or Word .doc so you don't have to lose all your work if you haven't prudently kept saving your word-smithing talents consistently through the process etc... Bon chance... Steve.
