Oh @Willow how rude of me, I am so, so sorry.
How could I, I just don’t know?
30 years today.
Thanks for telling me so quickly.
That artwork is absolutely brilliant, thanks for showing us all.
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No worries @Erica. It is confusing with my mother’s diagnosis ten years after mine. There’s no need to apologise. Thank you for your support and understanding. It means a lot. Warm wishes. Willow X
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Hi @Willow. I’ve been thinking of you lots. You have such amazing ways of expressing yourself. We could all learn something from you x
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Hi Willow
I’m so sorry to hear that your fears were confirmed it’s very hard for you all to process this news I’m sure. Also very uncanny timing. What I will say is keep your positivity as things are progressing with research into these cancers & treatments thanks to @BloodCancerUK & others all the time. I hope you are all doing ok & remember your blood cancer family is always here for you Willow all of you. Much love 
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Hi @Willow thinking about you all loads, how are you and your family doing?
Be kind to yourselves
Hi @Erica. Thank you so much for your kind enquiry. My sister has a follow-up haematology appointment tomorrow and we are hoping it will be with my lady haematologist this time. It is looking like she does have an MPN, almost definitely ET which means the three of us, mum and twin sisters all have MPN’s. The doctor confirmed it is not hereditary and he has never come across a case like this before. There seems to be a susceptibility in our family. It is particularly unusual as I was diagnosed in my thirties whereas my mother and sister developed it later in life. Obviously from a medical point of view we are an interesting case, but for me and my sister we are still in shock. For my sister to be diagnosed almost exactly thirty years after me makes it extra hard somehow. Thanks again for your support. Warm wishes. Willow X
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Oh, @Willow please let us know how your sister gets on tomorrow, fingers and toes crossed that she sees your lady haematologist this time.
Interesting discussion between the meaning of ‘hereditary’ and ‘family susceptibility’ I find it difficult to get my head round.
But more importantly for you all there is the personal angle and there is the shock, coincidences and are all the thoughts and emotions and practicalities that you each may have and all may have differently and similarly
Be kind to yourselves and I hope tomorrow goes OK.
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Thinking of you all @Willow. Please let us know how you get on tomorrow X
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Hi @Willow as ever thinking of you loads and wondering how you, your sister and family are doing?
Be kind to yourselves
Thank you @Erica and @Nichola75 for thinking of me and my family. My sister has the same CALR gene mutation as I have and the haematologist said she has ET which is the same as my mother who developed ET at the age of 70. My diagnosis (as you know) was 30 years ago with myelofibrosis and ET so these conditions are related. I am grateful my sister doesn’t appear to have the myelofibrosis element. She has started on medication to lower her platelets. The doctors are still saying they haven’t come across a family situation like ours. The gene mutation isn’t something any of us were born with but something must have caused it to occur in all three of us at different times. It is still a shock as my sister has always been the healthy one. Warm wishes. Willow X
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Thanks for the update @Willow. I can hear in your message that it is still very raw and has impacted you all so much. I hope you are all managing to be kind to yourself as well as to each other. How is your sister coping? X
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Hi @Willow , thanks for letting us know what is happening.
You show so vividly that shock lasts a long time, especially with you and your sister having such a special bond and that she has always been the healthy one.
Be ever so kind to yourselves
Rather impertinent reply, but the scientist in me is fascinated by this family “outbreak”. The MOSAIIC project in Aberdeen/Belfast/Southampton is trying to find any common factors encountered by MPN patients, and has been having problems recruiting patients to take part. Basically all that is involved is filling in an online survey, having some blood samples taken and supplying some nail clippings. It’s funded by MPNvoice, and details are on their website, (https://www.mpnvoice.org.uk/?s=Aberdeen+university so if you, Willow, or anyone else interested would like to have a look there, your contribution to knowledge could be very valuable.
D.
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Thank you @DickM for your interest in our family situation with MPN’s. It interests me too. However both me and my sister have varying degrees of cerebral palsy and our mother has dementia. Therefore, although we are happy to cooperate as much as we can with any scientific research our unique challenges have to also be taken into consideration. Fortunately we are now both under the same lady haematologist who understands all we are coping with. An MDT meeting was held recently about our case and next time we attend for an appointment we will be interested to hear what they have to say. Warm wishes. Willow X
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Sorry to hear of your multitude of problems, @Willow; my wife has Alzheimers, so appreciate the difficulty. Glad you have a listening consultant and a MDT on the case. Hope the MDT is not just clinicians, as sometimes seems to happen, but also someone who understands your social situation.
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It seems to me that the more Posts I read on here, the more it seems that there does seem to be a tendency for other family members to acquire either the same blood cancer or another type. The more research that is done into this the better, as when I had my ET diagnosis back in October, I was told that there was no genetic link, and that my children had no need to worry. When my dad died of lung cancer back in 1981, I asked a medical professional about genetic links and cancer, and she said that there was a link. (My sister died of cervical cancer in 2017) So I am wondering why with blood cancer, we are told that there isn’t one. Much more research needs to be done. Cancer that is labelled as rare, doesn’t seem to be getting the funding that more common cancers get. It would be nice to know what we are dealing with.
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Well, now’s your chance to help with research in this area. See the link I gave above and maybe check with your consultant as to whether you could take part!
DickM
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Hi @DickM. I don’t have any other family members with blood cancer, and long may it stay that way. Are you involved with the research?
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You don’t have to have any relations with blood cancer. The survey is trying to look as widely as possible at occupational exposure to things, geographic location, family history and sundry other aspects.
I’m just the patient representative on the steering group for the project. As a one-time academic, this sort of thing interests me, this one especially as my wife did her doctoral research in a closely related area half a century ago.
How are you all doing @Willow? X
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