Hypereosinophic syndrome/chronic eosinophilic leukaemia

In 2012 I was diagnosed with HES/CEL - hypereosinophic syndrome/chronic eosinophilic leukaemia. It’s caused by a somatic mutation in chromosome 4, known as FIP1L1-PDGFRA (similar to BCR-ABL). It’s also go a long name which is Myeloid Neoplasm With Eosinophilia and FIP1L1-PDGFRA Rearrangement. I’ve been on Imatinib since I was diagnosed, and will be for life as there is no cure per se.

I’ve only managed to contact one person with this form of blood cancer. I can’t find anyone else in any other forum or in social media. I just wondered if there was anyone else in here with this type of cancer? It’s quite a lonely place with nobody to share experiences with.

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Hi @BHPenfold a great big welcome to our forum.
It must feel a really lonely place to be when you cannot find anyone else with your diagnosis.
However what I have found on this forum is that no matter what our diagnosis is we often share the same fears, thoughts and feelings so you are now part of our forum family.
We are very supportive on here and if you would like to speak to someone the Blood Cancer UK support line is there for you.
I look forward to hearing more from you,
Look after yourself and I hope you find someone with your diagnosis.

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Hi @BHPenfold and welcome to the forum. I can only imagine how hard it must be having a really rare condition. I hope somebody on this forum is able to share in their experiences.
What we do have in common understanding all those thoughts and feelings. Was your consultant able tomooont you in the direction of any support groups?
Please keep sharing and I look forward to hearing more from you :blush:

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Hi @BHPenfold & a very warm welcome to the forum!
I do hope your keeping okay? I’m sorry to hear about your diagnosis and appreciate having a rare form of any cancer can sometimes feel somewhat isolating & frustrating.
Often we do hold links to external organisations associated to rarer blood cancers or indeed external support groups. However currently we do not hold information for your own diagnosis. This is something i will continue to look into for you also and report back if i discover anything that may be useful to you.
As @Nichola75 has previously suggested, your treatment team or CNS may hold further information regarding any potential support linked to your diagnosis.
I do hope that in the meantime you do find support in this forum and please do note our support service team are only ever a phone call away- Blood cancer information and support by phone and email | Blood Cancer UK.

Do take care, Lauran

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@Erica @Nichola75 @BCUK_SupportTeam

Thank you for your kind responses. I’ve been an BC Ambassador for about 8 years as well, so aware of the fantastic support you give - keep doing what you are doing please.

Unfortunately, my clinical team who is still see every 3 months, have no links at at to any support groups and to be honest there is very little in the south of England (Hampshire). I’ve had to take my eye off of my HES for the last couple of years (if that is actually possible), as I was also diagnosed with Prostate Cancer in late 2019, so have been focused on getting rid of that (which I’ve done successfully with surgery), but as my bloods have been drifting slightly out of normal these past few months, my imatinib has now gone back to a level as it was when first diagnosed. The lack of anyone else to share the experience with is making this journey harder, especially as I am not symptom free despite being in molecular remission (or at least below a level of detection of the mutation).

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Thanks for responding to us @BHPenfold and obviously your situation having had a 2nd cancer diagnosis must make it even more isolating for you. It cannot have been easy for you either. A double whammy for you.
However your others might felt they have or had similar symptoms to yourself.
We and the Blood Cancer UK are still here for you.
Look after yourself and please do keep posting.

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Hi @BHPenfold. That must be really tough for you and it’s sounds as though it really is hard to find anybody to share experiences with. It’s sounds quite rare. As @Erica said, please keep posting and keep us updated on your progress :blush:

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Hi BHPenfold, Although I don.t have your kind of blood cancer, I really appreciate your problem. In February 2021, I was diagnosed with Myelodysplastic syndrome (MDS)/MPN overlap which is also a rare cancer. I, too have only heard of one other person and he lives in Canada. I look at both the sites - Myelodysplastic syndrome (MDS) and MPN, but don’t really know how one affects the other… I know that there is a research programme in Birmingham but I live in the North of England. Well done on getting rid of the prostate cancer. Sadly my husband was diagnosed too late for surgery and he died in 2009. I miss him very much and this adds to the loneliness of my diagnosis, happily, I have great support from my family and haematology team. It’s just stopped raining - at last! Thank you. I agree that the forum does a great job. I really helps to connect with other people. Best wishes

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Hi @KateS. It makes such a difference having a good support system around you doesn’t it (both personal and medical support)
How are you doing at the moment? It’s still raining here!

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Oh @KateS I am so sorry that your husband died from prostate cancer in 2009yes, you must miss him and his support so much. People say it gets easier, but does it?
I am glad that you have support from your family and your haematology team.
Yes, we are never alone with our forum family around us.
Not sure if it is raining here as it is dark, but it sure is gusting.

Hi @KateS and @Nichola75 right on cue it has really started raining with the gusting
here !!

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Good Morning @BHPenfold i do hope you managed a lovely weekend. This may likely be a resource you have tried Chronic Eosinophilic Leukaemia – Not Otherwise Specified (CEL-NOS) - Leukaemia Care, who are a really great resources for some of the rarer conditions and also have a wonderful support line. Also a huge thank you to you for supporting us greatly through your work as an ambassador- we really do value your insight so very much!!

Best Wishes, Lauran

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@BCUK_SupportTeam

Hi Lauran, that’s for getting back to me. Typically with these rare variants, they often sound similar, but are quite different. While the clinical presentation of CEL-NOS (eosinophilia), is similar to mine, the cause, prognosis and treatments etc are different.

I don’t lack an understanding of the disease - most of the literature on my disease is academic, and I’ve become well versed over the years. I was asked to review Leukaemia Care’s CEL patient leaflet previously, but at that point I had to point out to them that there was some muddling of the content between a number of HES/CEL variants, so I can understand why this was published as CEL-NOS.

It’s not the lack of information - it’s the lack of anyone to share the experiences with I suppose - I had possibly hoped there may be one or two more in the 10 years since I was diagnosed.

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@KateS thank you for taking the time to write, and I am so sorry to hear that you lost your husband to PC. Such a terrible time for you, I am sure. Glad to hear you have a great support network around you.

My family been flippin plagued by blood cancers. I lost my Mum when she was 54 to Acute Myeloid Leukaemia, and my daughter was 3 when she was diagnosed with ALL (she’s fine now). Life can be so cruel sometimes.

Anyway, I hope you have survived the storms over the past few days, and looking forward to some sunshine!!!

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Gosh, @BHPenfold I cannot imagine what it has been like for you to have lost your mum to Acute Myeloid Leukaemia at just 54 yrs old and then for your daughter to be diagnosed with ALL at just 3 yrs old, I am so glad that she is fine now and then for you to be diagnosed as well with leukaemia.
Yes, life can be so cruel sometimes.
Despite all you have gone through you have given back so much to Leukaemia Care and Blood Cancer UK. Thanks so, so much.
Look after yourself.

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Hi BHPenfold
My husband Andy has HES, was diagnosed in 2010 and has been taking imatinib since then. He’s not on the forum but more than happy to correspond with you and share experiences. I find so much support with just reading forum posts and pass on info to him so this is my first posting. I was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2019 and on the watch/wait/worry rollercoaster but luckily we are in general good health albeit our fitness levels have declined vastly during the last two covid years.

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Hi @CarolT I am so glad that you have been reading posts on here and feeling the support of our forum.
Gosh, so you both have blood cancers, but great that you are both in general good health, but your fitness levels have declined vastly in Covid times, that’s lockdown for you…
Do you think your fitness levels will increase now summer is at the end of the tunnel?
I definitely feel keener to go walking when the sun peeps through.
I look forward to hearing more about you both, look after yourselves.

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Hi @Erica , umm a question we often ask ourselves. At the moment we’re still staying away from any group sports or the gym. We live by the seaside so we are able to walk on the beach when it’s not busy and always have plenty to do in the garden. Our local sports venue has been used as a vaccination centre so has only just returned to sports useage but at the moment the thought of being in close contact to others isn’t appealing even though my consultant said to go back to the things I did before but that’s easier said than done. Heyho we’ll get there one day.

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Hi @CarolT pre covid I was at our local gym every morning doing Pilates or dance classes, an obsession some might say!!!.
During isolation I have been going for a long morning walk every day. Then doing a Pilates DVD at home (I have 7).
I do not think that I will be returning to the gym. I have stopped wearing a watch and I can do that exercise in my own time.
For the first time I did meet a friend for breakfast at our local garden centre this week and it was as if the last 2 years hadn’t existed, it was wonderful to just see her and have a laugh together and we were there for 4 hrs.
Walking by the seaside sounds wonderful I can smell the sea from here.
Yes, hey, ho we will get there and I aim to spend my time doing what I want to and with whom I want to, but safely !!
Look after yourself

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Hi Carol, sorry for not replying sooner. We went away on a short break, then we bought a new car and had some work to close our business, and the next thing its May!

Thank you for your kind offer - i’d definitely like to take you up on that. Can we share contact details on the forum?

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