In November 2017 I went to the GP with pins and needles in my feet and got a full blood work up.
The results came back with platelets that were a 'bit high' (over 900).
The GP referred me to haematology, I was seen pretty quickly - by December I'd had a BMB and an outline of what 'could' be wrong; either ET or MF.
In January the diagnosis was confirmed as MF and I started on a dose of hydroxycarbamide.
Over the next few months the platelets level came down slowly as the dosage increased.
I had issues with fatigue, brain fog, anger management, altered bowel habit, etc on the hydroxycarbamide and have recently changed (Sept) to the Pegasys Interferon.
The change in medication has certainly had an improvement on my energy levels - I have started cycling again, doing 50-60 miles a week.
The platelets have come down and at my last check up (5th Nov) the platelets were down again - this time to 549!
I have to say both the Doctor and I are absolutely delighted with that!
In general, coming to terms with MF has been OK.
It's been strange trying to get my head around the fact that I'm not sick but I have this condition that is a 'cancer'. I have told my kids (14 & 12) that I have something wrong with my blood which makes me tired and I have to take medication which can also make me tired - and they know that when I get tired I get grumpy!
I haven't used the cancer word or even myelofibrosis when talking to them, the time will come for that conversation but hopefully it's a long way away.
I'm not looking too far ahead, trying to stay positive, focusing on the good news and hoping that the boffins working away in the labs across the world will find a cure (or a better treatment) by the time I get sick.
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Not2bad
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Hello and welcome! You’ve come to the right place, as they say. Like you, I find the idea that I have a “cancer” disconcerting to say the least, and you sure sound like you’ve got a very positive attitude about it all. Research seems to be blossoming all over, and you’re young, so the likelihood of improved treatments or even a cure in your lifetime - which, like most on this forum should be long - is good.
I think you have absolutely the right attitude - hang in there for now because there really has been a quantum increase in research and new trials over say just a few years ago. The Ash Conference is in December when all the latest research/trial results are presented, usually in a format we non rocket scientists can vaguely understand. I think this year will be especially exciting.
Also you are on, in my totally unqualified opinion, the best drug to ‘possibly’ slow progression. I’m sure there will be more updates on Interferons at Ash, including combo therapies.
Exercising and healthy diet are helpful and ideally don’t smoke, especially if on Peg. Evidently the inflammation from smoking can block Peg pathways.
Have you had a BMB? Have your Hems classified your MF - ie preMF, early, Int Stage 1 etc?
And have you been tested for other mutations incl CALR Type 1? (A good mutation to have)
Hi Paul - I’m still new to this. I have ET, no fibrosis and am on hydroxyurea. Does it not do any good in managing progression, or is it just all about lowering platelets?
Look at the recent year 3 trial results for Ropeg v HU. This should be covered in considerable detail at Ash next month. Ropeg is more refined version of Pegasys with less side effects.
Basically Ropeg has much better molecular response after 2 years. Is it slowing progression? Supporters say yes, other more conservative Hems say possibly but not enough data yet.
I should clarify that possibly Pegasys has worst side effects such as, for some users, depression and autoimmune issues. Hence some Hems view HU as a safer and easier to administer drug.
If you have the CALR Type 1 mutation your prognosis is very good (ie you should have loads of time to wait for new drugs or even major improvements in SCT), especially if you are pre MF as you appear to be. There is a CALR Type 2 mutation so need to clarify.
Hi welcome to the forum, good to hear that you are responding well to the Pegasus treatment, I have E.T JAK 2 Positive and take Aspirin and Hydroxycarbamide, was all a shock when I first found out, plus my daughter was in the early stages of pregnancy so left off telling her until she was past the 20 weeks as did not want to upset her, but once my husband and I told her she was OK with it all especially after me telling her that I was not going to kick the bucket for quite a few years and would probably go on to lead a normal life span.
I now have two lovely grandchildren who keep me on my toes, and so far the years that have gone bye have been good, not to many problems, fortunate for me I was able to tolorate Hydroxycarbamide, which is amazing as I react to a great many drugs but so far all is good, so it is good that you have found the one that is OK for you.
You are young so hopefully one day they will find a cure for all MPNs. Life is for living, enjoy your family, you are doing all the right things by staying Posative, mindfulness is a good thing to use as well, helps you to cope with all those little doubts that you might have.
Remember to eat well, good balanced diet is essential for well being, taking plenty of exercise, and drinking at least 2ltrs of water a day, flushes all the toxins through your body.
So Welcome, and please stay in touch with us all they are all a great bunch of people.
You sound just like me - I was only diagnosed a few mths ago and haven’t told my daughter who is undergoing IVF treatment at present - she’s already stressed enough!
I eat well (ketogenic diet) and exercise daily as I always did, and have no symptoms as such - so far I’m just on aspirin.
I’m drinking a lot of water 2-3litres a day - when you say it flushes the toxins out, what toxins do you mean? The ones resulting from medication?
I’m still a bit shell-shocked re this diagnosis and can’t really get my head around the fact that I have something that can be termed cancer - albeit with a small ‘c’. I’ve always been very fit, healthy and taken good care of myself. I’m thinking of seeing a therapist - for the first time in my life!
Hi Dee, sorry to hear you’re having a hard time but that’s very normal at first. I think we all were the same at first. I know I sure was. Eventually i, like most, got used to the diagnosis and most days am not bothered by it. But counseling is an excellent idea. Many of us have benefited from that & some, like me, take medication for our anxiety &/or depression. This really is the best group of folks and when you need a shoulder to cry on or need to complain we’re here to help. There’s also a lot of great ideas and knowledge to be found. Best to you. Katie
Thanks Katie! It’s good to be able to talk to others with the same condition! I’ve actually found a support group that are meeting up near me next weekend - and I’ll def pursue seeing a therapist.
Hi Dee, the toxins are from the Hydroxycarbamide, but as long as they do the job I will swig the water down, but do enjoy a glass of wine now and then, and get on with my life as the saying goes “life is for living” and I do.
Thanks for clarifying that Jean - I’m only on aspirin so far but swigging the water down too - can’t hurt. Still drink wine. Hopefully I’ll get to your ‘it’s life, get on with it’ stage soon!😏
Hi Dee. you sound like me! I was diagnosed last March with ET, on Hydroxycarbamide and aspirin, have always been fit and healthy so really struggle with it all. I find medical staff and some friends, because I don’t look ill, just expect me to get on with it. So much so I am seeing a physiologist once a month, which is really helping, just to talk to someone, as the only other person I speak to it about that understands is my husband. And this site has been a godsend, so if it helps I’d see a counsellor.
Thanks Jackie - I will certainly ask for a referral to a therapist when I see my GP this week. At least you have you husband to fall back on - mine is at the denial stage and dismisses any of my concerns with ‘there’s nothing really wrong with you, this isn’t really cancer abyway’ type answers.
Thanks Jackie - I will certainly ask for a referral to a therapist when I see my GP this week. At least you have you husband to fall back on - mine is at the denial stage and dismisses any of my concerns with ‘there’s nothing really wrong with you, this isn’t really cancer abyway’ type answers.
Hi Not2bad, like the name! Nice that you have posted and introduced yourself - welcome! I am another MF'er who was not 2 bad for a very long time. Lots of good info on here and on the MPNVoice website. Sounds like you have been handling things really well, keep it up. Best wishes ...Simon
I'll join with the others in saying "Welcome to this friendly forum"! Having an MF diagnosis will have been tough for you, but it is good to hear that Pegasys is working so well, both in bringing platelets down, and also regarding side effects. As a person on Hydroxy I was interested to hear of the troubles you had with it (they sounded so familiar from my own experience) and that you were so much better when switched to Peg Interferon.
Sounds like you have reached a workable solution regards what to say to your children. It is very difficult to know achieve the right balance when talking to friends, family, and people you work with. It took me a while to "come out" about it myself, and sometimes I have got it right, and other times I haven't. Any mention of 'cancer' is so loaded. I confess to using it once when I was tired and received a phone call from someone trying to sell me health insurance, who was far too persistent.... it certainly cooled their enthusiasm for a sale! But I felt guilty afterward! Ha!
Very Best Wishes to you, and am looking forward to hearing more from you on the forum.
Hi peter,you certainly make me smile with some of your antedotes.when reading your post had to chuckle when imagining the insurance guy's change in tone when you said the C word to him! No need to feel guilty,i must admit i did it once and suffice to say the reaction was much the same! Atb, tina🤗
Hi, welcome to this fantastic and friendly forum lots of advice and people who understand what it's like to have our conditions. I'm now 47 was diagnosed at 45 like you I told our children ( now 15,13) that I had something wrong with my blood that makes me tired, not using the C word. My 21 year old knows and understands they all help when I need it. I believe the best way to beat this is to stay positive like you .
Hi Not2bad hope your feeling ok today I was diagnosed with ET Jack2 Mutation 3 weeks ago but apparently I've had this problem since 2015 and the Drs didn't pick it up on my blood results bit annoyed to be honest as I have been going back and forth to my GP about headaches tiredness ect just got robed of they only found it this time through something entirely different and I had another full blood workout mine was 1225 I was already on Asprin I've started 500mg of Hydroxycarbamide daily the dizzy spells are not nice and I could sleep all day but apart from that I'm good at the moment fingers crossed I've only been on it a week and a half just hope it works
Hi Not2bad,welcome to the forum were i'm sure you will find some invaluable advice and many understanding people who know what your going through.stay positve,it certainly helps! Atb,tina.🤗
Hi, welcome! Pins and needles on feet was also one of my first symptoms - although I ignored it for almost a year! I was diagnosed with PV with very high platelets (1.5 million) four years ago at 50. Have been on Pegasys and aspirin since 2015 with excellent results: bloods are now normal and I inject only every 3 weeks currently (45mcg). The fact that MPNs are now classified as cancers is actually very helpful in terms of encouraging more research and, at the patient’s end, with things like getting free prescriptions for our meds on the NHS and ability to claim on critical illness insurance policies. I don’t use the cancer word otherwise. My teenage sons know I have a serious blood condition that is however well controlled, thanks to Pegasys and a really wonderful team of haematologists. I do get more tired than before, have had some other minor side effects along the way, but ultimately lead a normal life with full time work and don’t think about the disease much anymore. I hope Pegasys works as well for you as it has for me! Susana x
Thanks for all the kind words - I've been lurking on here for a while but just took the plunge last week.
It's great to know that I'm not alone, that others are going through the same thing and have the same issues with the meds, tiredness and all the rest.
I've become a lot more aware of feeling sick - things that I would have just ignored before (headache, stomach aches, colds etc) I'm noticing now. I'm taking paracetemol and immodium more than ever before.
'Is this the MF? Is it the meds? Is it just a headache??'
Hi again not too bad, I think my gp thinks I’m a hypochondriac, as I’m forever there since being diagnosed, in fact I’m sure he rolled his eyes once when I walked in! Never been ill before this, now I’m paranoid about every pain and twinge!
Welcome, this site has been the best thing for me, as I too struggle with the cancer treat not cure diagnosis. I was diagnosed last March, and still struggle to come to terms with it, I too haven’t told my sons, my husband told my eldest I have something wrong with my blood, but haven’t got the guts to tell my youngest as he’s a sensitive soul and worries, and they are 25 and 21!
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