Just diagnosed and worried

Thank you for great information and help.

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Welcome @JanPS to this forum. I hope what I’m going to say will help you at what must be a frightening and bewildering time for you. I was diagnosed with a MPD 28 years ago. At that time my platelet count was dangerously high and I was started on oral chemotherapy. After a while the platelet numbers reduced and I was able to have a break from the chemo. Maybe that is why you have been told you need chemo? The tablets are fairly ‘mild’ and don’t cause too many problems. I know just hearing the word chemotherapy is scary but I hope I have reassured you a bit. ET is a long term, chronic type of blood cancer but it can be ‘lived with’ as my experience shows. Also, the medics know so much more about the condition now than they did when I was diagnosed. My thoughts and very best wishes are with you. Willow

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Hi @JanPS, a great big welcome. As I read your post the feelings, which appear similar to yours, came flooding back and I was diagnosed with another blood cancer 16 years ago. The shock, fear, anxiety and yes, that unreal or even surreal feeling of me being in a bubble with the world going on around me and me thinking I was the only person in the world in my situation.
Well now you are not you are part of our community and we are here to support you and the wonderful Blood Cancer UK support line details are at the top of this page, their website also has lots of information on it. Although it would be great for you to hear from people with your exact blood cancer we are all individuals with different medical backgrounds. I hope I have shown from my opening comments that we often all share the same thoughts, feelings, symptoms and practicalities.
Give yourself time, I found the shock factor takes a long time to calm down. The important thing I believe is to look after yourself, be kind to yourself, eat healthily, but also treat yourself and keep posting.

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Thank you Willow that was very reassuring.

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Hi I was diagnosed with ET last September, and know how you feel. It’s unreal, and nobody understands you, because it is not a well known condition.
I take daily low dose chemo tablets, and will have to take them for life. I have not had any serious side effects, with the medication, and in fact some of the symptoms I had, but didn’t realise that they were part of the condition have got much better. I had a lot of terrible silent migraines/ visual disturbances seriously affecting day to day life , cold sweats and really bad itching after a shower.
Please don’t stress about the chemo tablets, they are low dose, and I am sure you will find more positives than negatives taking them.
I too am on a learning curve with this condition, even had one doctor ( who I was seeing over something else)telling me it was nothing to worry about probably born with it and my blood count was perfectly normal ( well yes it is with the medication, and no it is not genetic and you are not born with it!). He made me feel as if I was making it up.
The worst thing for me at first was really bad unnatural fatigue, and I still get bouts of that, but it is getting easier. I am determined to just manage the condition, be sensible and enjoy life.
You will be fine, here if you need to discuss anything. x

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Hi @Lindatyrer, your post will be so useful with your experiences. How have you manged to cope with your really bad unnatural fatigue, any hints will be very welcome? How are you coping with isolation?

Hi Erica, strangely lockdown (of which I am still adhering to) has made my fatigue so much better, it’s made me realise I need to make serious changes in my normal life, and to take life at a different pace.
I am having to learn to say to my hubby and family that I am too tired to do something and let them help at those times. I find things that in the past I would tackle easily (e.g paperwork) can really tire me, so try to do do things like that in the morning, and rest more of an afternoon.
Before lockdown , I would also carefully weigh up going out for evening meals and outings and just bring things forward so I was not out too late.
Hope that is helpful information. xxx

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Hi @Lindatyrer, actually lockdown, which I am also adhering to, has improved my fatigue too. I also want to make changes in my life and try and take life at a different pace. I am also getting better at saying ‘no’ to things and that makes me feel instantly better when I do. I realise that since diagnosis I do not deal with what personally stresses me well and that can set off my fatigue as much as physically overdoing it.
I am also (was) a morning coffee girl or (was) a lady that lunches. I am also prone to a nap in the afternoons. I don’t do evenings at all and everyone knows it. I also avoid all day outings, even if they are very social they still wear me out. You mention letting family help you out, I know I am useless at asking for help and I hope others will offer. I was always the capable one so why would they offer? Thanks now I know I am not the only one. Take it steady.

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Thank you so much for your very interesting information about how this disease has affected you. I am sorry to hear about how tired you are feeling and am glad you are finding ways to overcome it. I am thankful at the moment not to be having any symptoms so it was a hugh shock to find out I was ill.
I am going to hospital on Thursday to see specialist nurse and start chemo my levels are just under 800 not sure how bad that is and as I haven’t seen my consultant only a phone call it all seems strange I have a lot of questions to ask.
Finding this group is very comforting thank you.

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Only just dropped in to this; ET (Essential Thrombocythemia) is now referred to as an MPN (N for Neoplasm) since about 2007 when WHO reclassified it. I was diagnosed in 2013, and have been on 1000mg Hydroxycarbamide plus baby aspirin ever since. Negligible side-effects and until diagnosed with prostate cancer three years ago, had a completely normal life for someone in their 50s, apart from each birthday beginning with a 7. The only minor side effect is brittle nails, which is probably surviveable. So it doesn’t have to be a great problem, though others would probably disagree. My platelets hover around the 600-650 mark, which keeps the specialist happy as he reckons upping the chemo dose would probably oversuppress red cells. If you want a heap of original papers on the MPNs, contact me directly. Otherwise, Blood Cancer UK has a good leaflet on the MPNs (even though finally edited by myself…) and the specific MPN charity, MPNvoice has similar.

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A big welcome to the forum @JanPS, I’m really glad you found this lovely community at what must be an uncertain and anxious time for you. I hope the replies have helped you know you’re not alone in what you’re going through. Feel free to give us a call on the support line at any point if you want to chat things through!
It’s good to hear you have an appointment with your specialist nurse on Thursday. I’d encourage you to take down the specialist nurse contact details so you can contact them if you have questions/concerns, even when you’re not at appointments. Some people find it helpful to write down all of their questions before their appointments or telephone consultations, as it can sometimes be overwhelming to remember them all.
Keep posting @JanPS and let us know how you’re getting on. Do you have much support at the moment?

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Hi @JanPS, please let us know how you get on on Thursday and I really have found it helped me to write down all my questions, fears, thoughts, symptoms, feelings, practicalities etc. I have also learnt to ask those follow up questions too. That appointment is your time. Take care.

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Thank you Erica yes everything is going round and round in my head and I will write down questions, I presume there is no other treatment but will ask, I am taking aspirin at them moment since diagnosis.
The support here has been very helpful thank you.

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Hi Alice thank you for your response. My husband is being very supportive at the moment, he is furloughed from work at the moment although he is 72 and I’ve just finished work at 69 as I wouldn’t have felt safe in retail environment.
It has been a total shock and feel quiet frightened although I know it could be much worse and am very grateful for that.
Thank you very much for your kind response.

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It’s good to hear your husband is so supportive @JanPS. It’s so totally understandable to be feeling this way and I’m sure that so many on this forum can understand and relate to these feelings of shock and worry that you speak of. Do feel free to keep sharing your feelings, worries etc and let us know how you get on Thursday.

In case it’s helpful, here’s the Blood Cancer UK booklet on MPNs. The general information on ET is within pages 35-48. If you would like a copy posted to you, just give me a shout via private message on contact our support line. Take good care, Alice

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@Lindatyrer @JanPS welcome to the forum. Although my connection is because of HL (which I eventually kicked into touch 11 years ago) I still suffer from the side effects, including fatigue. Having a cancer diagnosis makes us reassess many things, like who and what is important in our lives. Being in lockdown/shielding seems to have taken pressure off to do things. We don’t have to apologise (and feel guilty) if we are not able to join in something. I also get housework (which I keep to a minimum), and other things,(like shopping pre-lockdown) out of the way in the morning. Like @Erica I found out the value of being able to stick up for myself, and using the word ‘no’ is a positive, especiailly when you have not used it much before.
Take the time to daydream, sit in the garden feeling the wind on your face, listen to the sounds around you. I really had the urge to stand in the pouring rain at the weekend, but made do with sticking my face and hands out of the door …a dose of pneumonia would be most unwelcome :joy: I hope you have a constructive meeting on Thursday @JanPS

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Thank you Linda for your email, it is comforting that you can live with ET and so glad you have Kicked HL into touch and that you continue to have a good quality of life.
I will know more tomorrow after going to hospital. Yes i love walking in the rain and wildlife of any sort and my sweet little dog Meg.

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Hi, @JanPS, what breed is your sweet little dog, Meg? Please let us know how your appointment at the hospital appointment goes tomorrow and I hope you get all your questions answered. We are all here to support you.

She is a toy totally black cockerpoo who is just under 5kg and she is my true companion love her to bits. Thanks for your support.

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Hi @JanPS, Meg sounds absolutely adorable and a true, unconditional companion.