Hi there, I am new to the group. I’m
58 years old, diagnosed with post ET Myelofibrosis in November 2023. It’s been a massive blow and still coming to terms with it, the unknowns etc. I have the JAK 2 mutation only. I have been taking Jakavi since diagnosis which has reduced my spleen, stopped the night sweats and helped me gain weight ( had unintentional weight loss) dipps score intermediate 1 but my Haemotologist has down graded me to low risk since I don’t have any bad mutations. I have had a consult with SCT specialist and they have found a few 12/12 MUD for when a SCT is needed. Haemotologist seems to think that could be 5 or more years away, I have bloods taken monthly, Hb has dipped a bit to 107 due to Jakavi &’platelets are in normal range 186. I live in Adelaide, hope to link with others in similar situation for support etc
Thanks,
Helen
New member
-
MPN-MATE Admin
- Site Admin
- Posts: 632
- Joined: Mon Apr 22, 2019 11:38 pm
Re: New member (Please come & say Hello!) :-)
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.
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
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.
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...* Essential Thrombocythaemia ET
* Polycythaemia Rubra Vera PV
* Myelofibrosis MF
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.
Re: New member
Hi Steve,
Thanks for the welcome! It’s nice to feel not so alone with our rare cancers. Thanks for your detailed response & sharing your story. Good news that the anti inflammatory diet is working. Is it any diet in particular? I wouldn’t mind looking into an inflammatory diet. So you were diagnosed with post ET MF in 2016?
Kind regards,
Helen
Thanks for the welcome! It’s nice to feel not so alone with our rare cancers. Thanks for your detailed response & sharing your story. Good news that the anti inflammatory diet is working. Is it any diet in particular? I wouldn’t mind looking into an inflammatory diet. So you were diagnosed with post ET MF in 2016?
Kind regards,
Helen
-
MPN-MATE Admin
- Site Admin
- Posts: 632
- Joined: Mon Apr 22, 2019 11:38 pm
Re: New member
Hey Helen... 
My pleasure, and yes... when I was diagnosed in 2016 (ET), there wasn't really any information out there at all concerning MPNs... Very little was being done. Partially because the conditions are so very rare, and because Australia has relatively such a small population. Hence, an 'economy of scale' problem... Not enough paying customers to warrant any really evidence based research into the illness...
To be a tad fairer tho', it wasn't until 2005 when the very first breakthrough became uncovered with the JAK2 gene and it's connection to what's called the JAK-STAT Pathway. It's like the 'Switch' that is 'turned on' which creates the over abundance of premature blood cells of every description etc.
2005 Was when the first 'DRIVER" mutation JAK2V617F OR (JAK2) was first uncovered, then MPL 2005/6 & then CALR (over 50+ types) in 2013. It wasn't until then that being able to block that neural pathway (effectively tying a knot in the gardenhose), became possible... and that wasn't really very long ago at all, in a relative sense...
Yes, ET was first diagnosis because at that stage the only tests completed was normal Full Blood Count (FBC), and I had extremely high platelets & internal bleeding and TIAs etc... Not many back then even knew you could do a Test for CALR, (which is my DRIVER gene), I actually had to ask them to do that Test after I tested negative for JAK2 etc. I also had to ask them to conduct a Bone Marrow Biopsy (BMB), and that was when I learned of my first Level 2 scarring and gained the Intermediate 2 classification... However, while I still have many symptoms, they don't ever really go away, however I believe that we simply learn to live with them is all...
The eventual downgrading was such a relief too because at that time I wasn't really relishing the notion of going down the ASCT path. To me, that course is the absolute last resort. As we continue to age naturally, we will also experience aches and pains via that process. Hence, staving off sarcopenia & wasting of our muscle matter is really the only way to maintain any real "Quality of Life" (QOL) into our twilight years, so to speak...
I prefer to work my body hard in order to achieve that better QOL rather than going down the ASCT path & hope for the best...
I am fortunate in that right now I at least have that choice, (for the moment anyways. Weighing up QOL pre- ASCT & possibly Post ASCT is really the equation one must ultimately take to task... in my view...
DIETS
I believe that they are really important. My 'Anti-Inflammatory' diet consists mainly of Plant-Based foods.
* No Processed Foods
* No Added sugars
* No alcohol (full of preservatives & sugars). I won't lie I do miss a glass of the grape with my evening meal, but it works better for me to avoid it altogether...
* No Soft drinks
* Some wild-caught fish (I do not eat meats at all)
* Pure H20
* Sparkling mineral water
* Loads of Fruits
* No bread
* Some Cheese... (LUV my cheese too
I do fail every so often, but that's okay, when I'm ready I get back on again etc... Best diets are the ones we can maintain...
I' will let Warwick know that you have joined our FORUM too... No doubt, it would be good for you to have a chat with someone who has already undergone the ASCT process at some point, if you are seriously considering that option...
Yes, 'ALONE' was exactly how we all felt at first Helen...
Please know that I / we are always here whenever you need a hand etc...
Steve.
My pleasure, and yes... when I was diagnosed in 2016 (ET), there wasn't really any information out there at all concerning MPNs... Very little was being done. Partially because the conditions are so very rare, and because Australia has relatively such a small population. Hence, an 'economy of scale' problem... Not enough paying customers to warrant any really evidence based research into the illness...
To be a tad fairer tho', it wasn't until 2005 when the very first breakthrough became uncovered with the JAK2 gene and it's connection to what's called the JAK-STAT Pathway. It's like the 'Switch' that is 'turned on' which creates the over abundance of premature blood cells of every description etc.
2005 Was when the first 'DRIVER" mutation JAK2V617F OR (JAK2) was first uncovered, then MPL 2005/6 & then CALR (over 50+ types) in 2013. It wasn't until then that being able to block that neural pathway (effectively tying a knot in the gardenhose), became possible... and that wasn't really very long ago at all, in a relative sense...
Yes, ET was first diagnosis because at that stage the only tests completed was normal Full Blood Count (FBC), and I had extremely high platelets & internal bleeding and TIAs etc... Not many back then even knew you could do a Test for CALR, (which is my DRIVER gene), I actually had to ask them to do that Test after I tested negative for JAK2 etc. I also had to ask them to conduct a Bone Marrow Biopsy (BMB), and that was when I learned of my first Level 2 scarring and gained the Intermediate 2 classification... However, while I still have many symptoms, they don't ever really go away, however I believe that we simply learn to live with them is all...
The eventual downgrading was such a relief too because at that time I wasn't really relishing the notion of going down the ASCT path. To me, that course is the absolute last resort. As we continue to age naturally, we will also experience aches and pains via that process. Hence, staving off sarcopenia & wasting of our muscle matter is really the only way to maintain any real "Quality of Life" (QOL) into our twilight years, so to speak...
I prefer to work my body hard in order to achieve that better QOL rather than going down the ASCT path & hope for the best...
I am fortunate in that right now I at least have that choice, (for the moment anyways
. Weighing up QOL pre- ASCT & possibly Post ASCT is really the equation one must ultimately take to task... in my view...DIETS
I believe that they are really important. My 'Anti-Inflammatory' diet consists mainly of Plant-Based foods.
* No Processed Foods
* No Added sugars
* No alcohol (full of preservatives & sugars). I won't lie I do miss a glass of the grape with my evening meal, but it works better for me to avoid it altogether...
* No Soft drinks
* Some wild-caught fish (I do not eat meats at all)
* Pure H20
* Sparkling mineral water
* Loads of Fruits
* No bread
* Some Cheese... (LUV my cheese too
I do fail every so often, but that's okay, when I'm ready I get back on again etc... Best diets are the ones we can maintain...
I' will let Warwick know that you have joined our FORUM too... No doubt, it would be good for you to have a chat with someone who has already undergone the ASCT process at some point, if you are seriously considering that option...
Yes, 'ALONE' was exactly how we all felt at first Helen...
Please know that I / we are always here whenever you need a hand etc...
Steve.
Re: New member
Hi Helen,
My name is Kate and I was diagnosed with ET in 2005. Like you I have a Jak 2 mutation which was discovered the year I was diagnosed.
I have taken many different drugs over the years as side effects and other problems forced changes. I took HU for many years but it finally became toxic due to the large increase in my dose.
In 2023, my ET finally progressed to MF and I now take Ruxolitinib like Steve. I am unable to exercise as I have a heart condition which became much worse after my Covid vaccinations. I have had Afib for several years and am not able to walk and keep up with my yoga. Now I have to be a little more careful as I become breathless.
I am a lot older than you so have not been considered for a transplant but have led a very reasonable life with my MPN. Some days are not good but I have been able to enjoy many years of life I did not think I would have. In 2005, I was told the prognosis was 7 years!
Take heart. Some days maybe difficult and you may change drugs several times but you need not give up. Generally, things can be controlled and you have to find what is the best way forward for you. We are all so very different in the way we respond.
This forum is excellent for seeking help although we are few in number.
Hope to meet you at our Coffee Catchup.
Best wishes,
Katie
My name is Kate and I was diagnosed with ET in 2005. Like you I have a Jak 2 mutation which was discovered the year I was diagnosed.
I have taken many different drugs over the years as side effects and other problems forced changes. I took HU for many years but it finally became toxic due to the large increase in my dose.
In 2023, my ET finally progressed to MF and I now take Ruxolitinib like Steve. I am unable to exercise as I have a heart condition which became much worse after my Covid vaccinations. I have had Afib for several years and am not able to walk and keep up with my yoga. Now I have to be a little more careful as I become breathless.
I am a lot older than you so have not been considered for a transplant but have led a very reasonable life with my MPN. Some days are not good but I have been able to enjoy many years of life I did not think I would have. In 2005, I was told the prognosis was 7 years!
Take heart. Some days maybe difficult and you may change drugs several times but you need not give up. Generally, things can be controlled and you have to find what is the best way forward for you. We are all so very different in the way we respond.
This forum is excellent for seeking help although we are few in number.
Hope to meet you at our Coffee Catchup.
Best wishes,
Katie
Re: New member
Thankyou Steve & Katie,
I will look into the anti- inflammatory diet, I do exercise & keep fit at the gym, running on treadmill & do weights. I’m not very tech savvy but will have a go at joining a coffee chat. Also I would be keen to chat to Warwick about his experiences as I will one day need to go down the SCT path, unless some clever researcher comes up with a magic pill to put diseases like ours into remission. I live in Adelaide where Dr Daniel Thomas is working on better treatment for MF. My haemotologist went to a talk a few weeks back about that Dr Thomas was giving on his latest research, My haemotologist said he is a very clever man, so at my next appointment I will chat to my haemotologist about any info/ insights he gained from the talk & I hope to be able to share any promising progress on here
Regards
Helen
I will look into the anti- inflammatory diet, I do exercise & keep fit at the gym, running on treadmill & do weights. I’m not very tech savvy but will have a go at joining a coffee chat. Also I would be keen to chat to Warwick about his experiences as I will one day need to go down the SCT path, unless some clever researcher comes up with a magic pill to put diseases like ours into remission. I live in Adelaide where Dr Daniel Thomas is working on better treatment for MF. My haemotologist went to a talk a few weeks back about that Dr Thomas was giving on his latest research, My haemotologist said he is a very clever man, so at my next appointment I will chat to my haemotologist about any info/ insights he gained from the talk & I hope to be able to share any promising progress on here
Regards
Helen
-
sydunipete
- Posts: 24
- Joined: Mon Jan 01, 2024 3:04 pm
- Location: Lake Macquarie
- Contact:
Re: New member
Hi Helen and welcome.
I’m Peter, 62, stage 2 MF, CALR+ and TP53 (not a good one to have). I’m still fit and well but am being referred to a specialist for a SCT. I’ve been on Hydroxyurea for 11 years with no side effects but next month I join the Ruxolitinib club.
Sifting through all the information available can be daunting and social media sources can be quite triggering. We want to gain knowledge of our conditions in a few hours of consultations that specialists take many years to acquire.
In Adelaide you have a very clever Professor David Ross who is doing world leading research into the CALR antibody. I’m not sure if he sees other patients.
This group of people is great for sharing information and simply to let you know that you’re not on this journey alone.
As Steve has mentioned, an anti-inflammatory diet has a lot of attraction. There is medical research to support a Mediterranean diet and maintaining general fitness.
I’m determined to make the most of every day I have available to me. Same days that’s a lot, and some days that might simply be getting out of bed.
Welcome!
I’m Peter, 62, stage 2 MF, CALR+ and TP53 (not a good one to have). I’m still fit and well but am being referred to a specialist for a SCT. I’ve been on Hydroxyurea for 11 years with no side effects but next month I join the Ruxolitinib club.
Sifting through all the information available can be daunting and social media sources can be quite triggering. We want to gain knowledge of our conditions in a few hours of consultations that specialists take many years to acquire.
In Adelaide you have a very clever Professor David Ross who is doing world leading research into the CALR antibody. I’m not sure if he sees other patients.
This group of people is great for sharing information and simply to let you know that you’re not on this journey alone.
As Steve has mentioned, an anti-inflammatory diet has a lot of attraction. There is medical research to support a Mediterranean diet and maintaining general fitness.
I’m determined to make the most of every day I have available to me. Same days that’s a lot, and some days that might simply be getting out of bed.
Welcome!
Re: New member
Hi Peter,
Thanks for the welcome, yes we are lucky to have Professor David Ross as well as Professor Daniel Thomas here in Adelaide. I have already made some dietary changes and have kept myself very fit over the years. I look forward to hearing other’s experience on this forum, it’s nice to feel not so alone in our journey’s. I have connected with 3 other females who live in SA who have MF through the AUS/NZ MPN Facebook group so that has been helpful.
Thanks for the welcome, yes we are lucky to have Professor David Ross as well as Professor Daniel Thomas here in Adelaide. I have already made some dietary changes and have kept myself very fit over the years. I look forward to hearing other’s experience on this forum, it’s nice to feel not so alone in our journey’s. I have connected with 3 other females who live in SA who have MF through the AUS/NZ MPN Facebook group so that has been helpful.
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sydunipete
- Posts: 24
- Joined: Mon Jan 01, 2024 3:04 pm
- Location: Lake Macquarie
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Re: New member
That group is the only Facebook MPN related group that I belong to. I discarded all the rest.
There was a recent discussion there about SCT. It went a little off track there at the end but it did show a few different views.
There was a recent discussion there about SCT. It went a little off track there at the end but it did show a few different views.
Re: New member
Hi Helen and welcome to this forum
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My name is Leon 61 with ET CALR since 2017
I was on Hydrea until 2023 and since then on Pegasys interferon (67.5mgc fortnightly)
I am managed by Cecily Forsyth
I hope you will join our cafe meeting (Steve will announce) and get most of your questions answered
This group helped me a lot with support and psychologically and I wish I have known them from the start of my diagnosis in 2017
Welcome again and we will see you at the meet
Leon
.
My name is Leon 61 with ET CALR since 2017
I was on Hydrea until 2023 and since then on Pegasys interferon (67.5mgc fortnightly)
I am managed by Cecily Forsyth
I hope you will join our cafe meeting (Steve will announce) and get most of your questions answered
This group helped me a lot with support and psychologically and I wish I have known them from the start of my diagnosis in 2017
Welcome again and we will see you at the meet
Leon
Re: New member
Hi Leon,
Thanks for the welcome, yes I look forward to joining the next cafe meeting,
Kind regards,
Helen
Thanks for the welcome, yes I look forward to joining the next cafe meeting,
Kind regards,
Helen