Hi all my name is Peter, I live in Western Australia and I was diagnosed with ET in 2010. I questioned the diagnosis when it did not appear to follow the WHO guidelines and the top bloke agreed with me and I was then diagnosed with MF. I am now 77 years of age.
To help the newbies to perk up, life has been quite good in the last 7 years and although I feel desperately tired at times life is still good.
I used to gave very bad Pruritus in the beginning and tried Interferon injections for a time, no relief gained so I tried UHV radiation three times a week and that helped the maddening pruritus. I still got the bone aches. About three years ago I was lucky enough to get the drug company to give me Jakavi (Ruxolitinib) on compassionate grounds. and WOW what a difference, No bone aches, no pruritus, and my spleen is normal sized again.
I have been transfusion dependant for a few years, but recently my Hg has remained in the mid 80s and I am stable. My doctors are nonplussed, they have not got a clue as to what might be happening. The ONLY drug I take is the Jakafi. My platelets are in the normal range, my white cells are three times higher than normal, and the rest of my results look as if they have been written in blood, very little in the way of black type.
However the big negative for me is since I no longer need transfusion each month I have been desperately tired, dizzy, depressed and sometimes a cranky pain to my darling wife Lori.
Well that is all about me. Every day is Christmas, but I do wish someone could come up with an anti tiredness anti cranky plan.
Hope all of you sharing this affliction can see light at the end of the tunnel.
Best Wishes Peter
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PeterNB
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What an utterly uplifting post. I don't think you need an 'anti cranky plan' at all, maybe your wife might disagree!
It's great that the Ruxolitinib is stabalising your condition and long may this continue for you. I'm sure your post will offer some inspiration to anyone newly diagnosed with MF.
As for the fatigue this is something we all seem to suffer in varying degrees, myself included. By the way, I'm ET (jak2+) diagnosed May 2016.
Hello Peter. Thank you for posting your very positive experience . You give those who have been diagnosed with MF a uplifting message. I particularly like " every day is Christmas" part.
I do hope your Doc could come up with something for your dizziness , do you take an anti depressant? I do, just a low dose and it helps so much. You sound so upbeat that it's obviously not you feeling 'down' but may be an imbalance of seratonin that could do with a tweek.
Just a small query, does anyone know of anyone who has been taking Curcumin (an extract of Turmeric). I believe that some research has shown it might be efficacious for such as us. I intend to talk about it with my docs next week, but I think they will be quite conservative
My name is Steve and I am based in Sydney. I too was originally diagnosed as ET (May 2016), until by BMB was reassessed and my diagnosis changed to MF (December2016).
Apparently, I had suffered from a TIA (minor brain stroke in 2015), however, it all but went undiagnosed. My diagnosis was discovered a year later via a standard medical. I commenced treatment w/ Hydroxurea (HU), and I found that experience intolerable. Next was the Interferon Alpha, which I believe kicked off my pruritus to a new level unseen previously. Nevertheless, it did bring my platelets down, which even today remain stubbornly high (c.high 800).
The Ruxolitinib (Jakafi) certainly removed my confused mental feeling. Where I felt like I was stumbling around in a fog. However, I still suffer terribly at times w/ extreme fatigue (so you are definitely not alone in that department).
Possibly my biggest issue is my continual failing memory. Ever since the TIA, (I think), my memory has deteriorated and I find that both greatly disturbing & equally depressing as it makes me feel personally most unreliable at times. The more stress I suffer from the worse my memory appears to be also... Which is very strange to me as stress in my previous life I found as a kind of incentive to achieve my goals.
For those reasons & perhaps a few others, I too can be a tad cranky at times, because in many ways I feel robbed of being able to participate in a previous much broader range of activities than I am able to do today etc... I am 58.
However, I am most grateful to hear of your positive experiences Peter. Welcome to our rather exclusive little club.
Best
Steve
PS. I had the occasion to visit WA about a decade ago now. Drove most of the coast and saw a great many things before spending a few days in Broome before flying out for Darwin. Astoundingly contrasts. It was a most memorable journey.
Hi Steve and thank you for your post, seems we parallel each other in some ways, although I never used hydroxyurea, for me Jakafi has been liberating and has ver much improved lifestyle. I also had high platelet counts but that has steadily normalised over 3 years of Jakafi use, so chin up, you will feel gradually better as that drug takes more of a hold. By the way how long have you been on Jakafi?
Thanks for your reply. Yes, it certainly would help a great deal if my platelets would somehow normalise to the required range.
You say it's been three (3) years for you. That is interesting. Generally speaking, I do agree w/ some of your sentiments in that I am much brighter than I was mentally & to some extent physically since commencing the Jakafi.
I have only been on Jakafi (25mg bd) for almost a year now, and my platelets still remain stubbornly in a range from mid 700s to 1M.
I have just recently started lowering the dose (gradually) to see what might transpire. Hence, 20mg bd and if my platelets behave themselves I shall try reducing it again to 15mg bd and so on... For I believe that some of the adverse side-effects I have might well be due to the Jakafi & there is really only one way to find out,,, experiment on myself!
When I tried this course of action previously my platelets shot up again, however, maybe I needed to give a tad longer before reverting, we shall see I guess...
I will let you know how that transpires over time...
Hi Steve, this 25mg Jakafi bd, I guess that bd means bi-daily. Or 50 mg a day, that does seem high to me as I thought the standard dose was 2x20 mg a day. What does your haematologist say about experimenting with the dose, mine was very disapproving of the suggestion. I found 20mg difficult at the beginning and it was reduced to 2x15mg for the first couple of months, I suggested that I go back to that last week to see if it would assist in tiredness, he was quite vehement in opposition. I see my specialist GP in a couple of weeks and will see if he thinks a transfusion is called for, but it hardly seems so with Hg at 86. I think everyone is stumbling in the dark over this tiredness thing. They need to walk a mile in our shoes and perhaps they would be less blasé. However it is what it is.
Steve, are you transfusion dependant? Or is your Hg stable? How are your Whites mine are at 26.
Sorry yes Kevin, bd is bi-daily. I guessed you would be also taking doses twice daily, and would therefore comprehend my meaning. I have become increasingly aware of the use of acronyms and jargon since this whole venture started...
There is a problem w/ reductions that are too fast. It is known as 'Ruxolitinib Withdrawal Syndrome' (RWS). It can cause a rebound of unpleasant symptoms of bone pain, & spleen re-enlargement to name a couple of culprits...
When I was first diagnosed my platelets were at 1.7M, and when I first commenced Jakafi it was 20mg bd, and then when my platelets were not responding accordingly the dose was increased. Now they stay in the range previously mentioned mostly.
My Hg & Hct are constantly declining. Hg was last recorded at 120, so still higher than yours, & my Haemocrit at 0.34. My reds are also low at 3.9 & WCC at 5.6.
Yes, it is actually difficult to really explain what it is like to 'hit the wall' so to speak. I have a moderate case of anaemia although my Iron counts are ok. But I also periodically suffer from some minor internal bleeding and nose bleeds in the back of my throat etc...
I guess all those things contribute to my fatigue... But yes, you are correct of course... we can really only learn as we go.
Well your platelets were a lot higher than mine at the beginning mine were about 800. My Hg has always been below 100, 130 is about normal, my WCC is sometimes over 30, my iron is through the roof. So given that we both have the same MF diagnosis our stats are as different as chalk to cheese, which probably means we are labelled MF as a catch all until something else categorises us, by the way do you have the Jak 2 v617f gene?. My understanding of Ruxolitinib is that it is designed to interrupt the signalling pathways to the stem cells and inhibits excessive cell production, thus we exacerbate Anemia by lowering Hg and platelets, often the high white cells are caused by immuno probs, but most of the white cells are immature and not very effective. I guess Steve that I am teaching grandad to suck eggs here. However good luck in your quest for answers and I hope all goes well
Sorry about the long delay in my responding to your last post...
I am just getting ready to go off to Asia w/ a good friend for a short break. All a tad daunting really, but I am determined to try to enjoy myself just the same...
Med's sorted & all appointments cancelled /rebooked etc...
No, (JAK2 neg'), however, I am CAL-R mutation instead.
As I understand it they also are apart of the same JAK-Stat-pathways etc.
There are two (2) types of CAL-R & I am of the Type 2 variety. Accordingly, assuming the peer reviewed papers I have thus far digested, (for Type 2 mutations), are somewhat correct, longevity is forecasted as better for the former(Type 1).
Nevertheless, I am determined to try to remain as healthy as I can for as long as I can...
My renal system seems to be the latest mystery as the indices continue to crash well below the norms.
I leave this Saturday, and I am hoping to try some scuba if I am able... (?)
Well done Steve, I hope you have a great time, I have been on a couple of cruises, the last on put me in hospital with pneumonia, my own fault really, I got into a lift jammed packed with people, too lazy to take the stairs, take the immuno seriously, don't get mixed up in close packed crowds and take a few face masks with you, just in case
Hi Peter. I have just read your uplifting story. Thank you for sharing. My husband is about the same age as you. He had PV for 28 years but it progressed to MF four years ago. He has been on Ruxolitinib for a year. His hgb is going down-around 102 , platelets around 100 and WCC about 20.5. No transfusions yet but Haematologist may try erythropoietin injections?? He does have some immature cells and I worry about the implications of this (acute myeloid leukaemia??)
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