I’ve lived with polycythaemia for 20 years without it interfering with my life much.This year my health fell off a cliff with bone pain infections and headaches.I’ve been diagnosed as having post polycythaemia myelofibrosis. Im finding it hard to explain to people that I know I already had a blood cancer that now I’ve got a different one and I’m not doing very well.Anyone else had this.
Thanks
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A great big welcome @Alison1964 to our forum.
So sorry to hear that your health fell off a cliff this year.
I have a different blood cancer, but I expect we have similar thoughts and feelings.
It is so difficult to explain to others about blood cancers and I think a one reason for that is that it is invisible.
When I broke my arm a few years back everyone fell over themselves with offers to help because they could relate to my plight.
Also what’s gets me is when people say ‘oh, you do look well’ when I am feeling really yukky.
As to how you tell people that you are not doing very well, they will probably not know what to do or say and I find there is a need in them to try and make it better or to tell me what to do.
I think all you can do is to sit people down and tell them how it really is and what it is like to be you.
Being able to ask for and accept help is also difficult for me.
If it would help to speak to the Blood Cancer UK support line their number is 0808 2080 888.
I hope others will be able to give you better responses than I have
Please do be very kind and look after yourself and please so keep posting.
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Hello @Alison1964. A very warm welcome to this forum. I identify with your experience and the emotions you express. I was diagnosed with an Myeloproliferative neoplasms (MPN) thirty years ago when I was in my thirties. I was told it was hard to classify and had features of Essential thrombocythemia (ET) and myelofibrosis. In recent years the features of the disease have changed and it has transformed to 100% myelofibrosis with no longer any features of Essential thrombocythemia (ET). Like @Erica has said, having a ‘hidden’ condition is so hard for people to grasp. I haven’t really got any answers for you other than to say I understand and please keep sharing how it is for you. I really sympathise with the bone pain as that, and fatigue, are my biggest issues. Thinking of you. Warmest wishes, Willow x
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Hi Willow
Thanks for the reply.I think forums like this will be really helpful to me now.I’m afraid I steered well away from them before as I didn’t want to think of as ill.
Thanks Alison
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Hi @Alison1964,
I’m so pleased you have reached out. I’m really sorry to learn that your condition has moved into MF. It’s understandable that you will be struggling to explain this. Blood cancers are complex & with little general knowledge about Myeloproliferative neoplasms (MPN)’s from the public, knowing how to pitch it and what to explain can be really difficult.
I hope you will be able to connect to many others within the forum that can help support you and share their experiences.
If you are on watch & wait just now we do have some booklets which can help explain things to friends & families- our fact sheet, Watch and wait explained: for family and friends
Do also know that if you ever wish to talk things through, our support service team is on hand at any point- 0808 2080 888.
Take Good Care, Lauran
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Hi Lauren
I’m not watch and wait.Straight in at the deep end with an appointment re bone marrow transplant and I’ve started Ruxolitnib.
Alison
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Hi Alison
Bless you that’s a lot to take in. I was diagnosed 11 years ago but been on watch and wait until this summer when I’ve been put on Ruxolitinib. If that’s your age above after your name you are the same as me. I had the tests for bone marrow transplant match about 15 months ago but nothing close to a decent match so my consultant says if the Ruxolitinib continues to work as I’ve only been on it 3 weeks I will probably just stay with medication and not try for a transplant as the risks are quite significant unless they can get a really good match. As I feel well at the moment and haven’t felt ill yet we agreed it’s not worth the risks. Don’t dive into anything too quickly see how the Rux helps you first. Take care Nicki
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Hi Nicki
Thanks for that.I am 58 and I’ve been on Rux 2 weeks.I certainly do want to know a lot more about bone marrow transplants before I take any decisions.I’ve had to take ill health retirement as a result of my recent symptoms.I’m conscious that for me retirement is in itself a huge change that I need to give myself time to adapt to.As a lady of leisure I may be less symptomatic!
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Hi Alison so similar time to me I’m in my third week.
What were your symptoms which led to going on Ruxolitinib ? Mine was just my red blood count dropping to 84. I was pretty scared about going on the medication but I’ve been okay and I too retired two years ago but that was to look after my Dad as he had dementia and it was a lot for my Mum so I retired to help her more and be more support. He sadly died and my Mum’s bowel cancer returned. Sadly she died in June this year and my bloods took a bad turn with the shock. I’m trying now to put myself first and give myself the best possible chance to lead a normal stress free life. With new meds available that weren’t around when I was diagnosed I’m hoping there is more choice to help us treat the symptoms without transplants. X
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Oh @Nicki535 I am so sorry to hear that you lost both your parents so recently.
I just do not know how how you have ben able to process everything. As you say shock can really add to the mix too.
If you find out how to lead a stress free life please do let me know. I haven’t dealt with whatever personally stresses me well since my diagnosis!!
Yes, putting yourself first sounds a good idea to me.
Be kind and look after yourself.
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Hi Nikki
Sorry to hear you’ve had a rough couple of years with your parents.My main symptom was recurrent infections that got me hospitalised for IV antibiotics.Started with sinusitis last March then I was in again with a fever at the end of June and was in hospital then until the end of September.They never found a source for the fever but the infection markers in my blood and my temperature went up every time they stopped antibiotics.Then my blood count started dropping and I was moved off infectious diseases into a haematology ward and got the diagnosis.I had bone pain but had assumed that was arthritis.
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Hi @Alison1964 yes, I would also say to give yourself time to adapt to retirement, I adapted rather quickly and have not looked back.
In hindsight I think I joined too many groups too quickly, during lockdown I reflected on what I wanted to do and with whom and stepped down from some commitments that I was not enjoying.
As for being a lady of leisure, personally I am a lady that lunches, I don’t do evenings, and always finds something to fill my time!!!
Look after yourself and please keep posting
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Oh dear Alison you have had a difficult year.
At least you have been given a diagnosis now.
Do you feel better after being on Ruxolitinib ?
I know it’s only two weeks but hopefully it’s working well for you.
Even with Myelofibrosis everyone’s symptoms seem different. Let us know how you progress over the next few weeks on the new meds
Best wishes
Nicki
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Hi Nicki
I feel much better on Rux.My bone pain which everyone thought was arthritis and a slipped disc is much less!
I’m going to a patients forum by MPD voice in Newcastle today so will be meeting more of the MPD gang.
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Hi @Nicki535 and @Alison1964, I have myelofibrosis and have been taking Ruxolitinib since 2017. It has helped with the bone pain and my spleen size but the downside is that it has caused my Hb (haemoglobin) level to drop. Therefore I am interested to hear that your Hb improved. I seem particularly sensitive to the Ruxolitinib and if my haematologist has to reduce the dose if my blood counts drop too low, the bone pain really kicks in. Before I was given Ruxolitinib the bone pain was miserable. It hasn’t gone away completely but it is more manageable. Thinking of you both. Warm wishes, Willow xx
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Hi @Willow and @Alison1964
My consultant said the haemoglobin generally drops initially with Rux but mine didn’t it went up which he was pleased about. I guess over time it drops when you become immune to it and then you have to take something else instead. I know Monolitinib is particularly targeted at anaemia so that could be an option for you. Thankfully new meds are coming out all the time. So far I’ve not had any bone pain since my diagnosis 11 years ago which I’m really grateful for. I did say to my consultant how long do I have to take Rux for and he said until it stops working then we will find an alternative although he said he has patients on it since it was first brought out and it controls their symptoms well.
Regards
Nicki
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So after having been on Ruxolitinib for 6 weeks I have had the drop that was expected the first time. So my HB went up to 101 now it’s down to 74 
I thought I was a little out of breath the last week or so. So I’m now booked in for a blood transfusion tomorrow as we are flying to Spain on Saturday for three weeks so my consultant doesn’t want it to be a potential problem whilst I’m away. Hope it starts to settle down in the coming weeks. All a bit of a worry. My consultant says if it doesn’t pick up I’ll have to go on monolitinib which is targeted at anaemia based symptoms. The good news is my spleen has reduced to 5cm so I guess it’s working
Nicki
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Hi Nicki
I hope you have a fabulous time in Spain. Take a good book and some snacks to your blood transfusion. I had one yesterday and it took over 4 hours and I was bored out of my brain. My Rux seems to have worked in getting rid of my symptoms but HB is hovering around 79.Yesterday was my second transfusion since starting Rux 6 weeks ago but im not sure how problematic having frequent transfusions is apart from the inconvenience. The haematology day centre seemed pretty relaxed about it. They have patients with other illnesses coming in 3 times a week!
Alison
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Thanks for the update @Nicki535.
Have an absolutely wonderful time in Spain, it will hopefully be the best medicine.
Please do let us know how you get on.
Enjoy and spoil yourselves
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Hi @Alison1964
This is my first transfusion. I was told May take 6 hours I’m having 2 bags of it !
Hopefully won’t be that long. How long do the transfusions last in terms of weeks do you know ? Do you feel weird after or during it ?
I will take a good book and snacks for sure.
It’s very disappointing my HB has dropped so much but that’s what Rux does apparently. Gets rid of other symptoms which is great but not so good for red blood count.
Hopefully it will come up again soon. Have they said what will happen with you ? Do you keep going with Ruxolitinib and hopefully it will settle down in time. I’m a bit of a stressy person so don’t think that helps. But looking forward to the holiday away and a total change of scenery. Since losing my dear Mum in June I feel so desperate and lost and now with this on top of it all never mind could be worse I guess. Hope you settle down soon with your red count x
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