Hi! I’ve recently found Blood Cancer UK following a diagnoses of Complex Myelodysplastic syndrome ('MDS')/MNP.
I have now read here that MPNs can be broken into 1 of 3 headings, but I have no idea which I have.
I’m currently on Watch and Wait, but had bloods taken this week ready for an appointment with my consultant next week.
Does anyone have Complex Myelodysplastic syndrome ('MDS')/MNP and can offer more insight into this condition please?
What should I be asking my consultant?
I would appreciate any relevant/helpful information. Thanks.
2 Likes
Hi @Hepzibah
Welcome to the forum. I’m sorry to read about your diagnosis.
To get best advice I would suggest you speak to the @BloodCancerUK-SupportTeam as they will be able to answer questions and suggest resources.
You can call them for free
Call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
Our phone lines are open:
- Monday, Wednesday, Thursday, Friday: 10am – 4pm
- Tuesday: 10am – 7pm
- Saturday: 10am – 1pm
- Sunday: Closed
- Bank holidays: 10am – 1pm
Hope that helps
3 Likes
Hi @Hepzibah
It can all be so overwhelming can’t it. I remember having a long list of questions to ask.
I have copied a link below which is really useful and has questions you may want to ask a log with other useful tips. I would write these down and take a note book with you.
Is there anybody who can come to the appointment with you. I found it really useful having somebody take notes for me as I couldn’t always remember what was said.
Nichola
3 Likes
Thanks for your suggestion.
2 Likes
Thanks. I have read that, but will take another look and read it without reading other items and filling my head so that I can’t separate to wood from the trees.
Thankfully, my consultant is gentle with me - I’m teaching her not to use words longer than one syllable. 
4 Likes
It makes all the difference having a good consultant. Keep us updated on how you get on
4 Likes
Thanks. It certainly does!
4 Likes
Hello there @Hepzibah, welcome to the forum. I’m very sorry to read of the complex diagnosis that brought you here, but am very glad you found the forum.
I see dear @DuncanB and @Nichola75 have suggested giving the specialist Blood Cancer UK nurses a call which I’d suggest too.
Perhaps you’d like to read the Blood Cancer UK information about Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') overlap: Blood cancer types explained | Blood Cancer UK
I happen to live with one of the Myeloproliferative neoplasms ('MPN') called Polycythaemia vera ('PV'). I’m sure you could contact your consultant to ask for more details about your specific diagnosis. If you use the NHS app you might have diagnosis information added there.
From my non-medical understanding, the main Myeloproliferative neoplasms ('MPN') tend to have similar and overlapping symptoms and treatments, but do check with your specialist. Here’s the BCUK information about the 3 main Myeloproliferative neoplasms ('MPN'): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
There’s this recent forum thread where other forum members talk about their Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') overlap: MDS/MPN Overlap Question & Help
Another slightly older thread: Recent MDS/MPN Overlap Syndrome Diagnosis
One more for luck: MDS & MPN overlap
You can search the forum using the search box at the top, and you’ll find many folks here living with Myeloproliferative neoplasms ('MPN') and Myelodysplastic syndrome ('MDS') which I hope will give you some ideas of what to raise with your consultant. Don’t forget that our nurses when we go in for bloods can often share really useful information too.
My tip would be to keep note at this early stage after diagnosis of any symptom new or old so you begin to have a record of any changes which you’ll be able to refer back to. There are Myeloproliferative neoplasms ('MPN') symptom trackers you can use on a smart phone or printed out like this: MPN | Sanius Health
Take your time, I imagine it’s a lot to take in. If you have loved ones to share this with then I’d say that can be a great support. Maybe they can attend appointments with you too for a second set of ears to help take notes.
Do please keep us posted @Hepzibah, thinking of you at this difficult time.
3 Likes
Good morning @Hepzibah
Thank you for your post and welcome to our forum.
We are so sorry to hear about your recent diagnosis and can imagine this came as quite a shock and can be a daunting time.
We hope you are doing okay, but should you wish to talk through any of this with one of our support nurses you can get in touch on 0808 2080 888 or send us an email at support@bloodcancer.org.uk.
I can see that others have given some really useful information and links to great resources.
I just wanted to let you know of our page Just diagnosed with blood cancer: what happens next? | Blood Cancer UK as this has a section on ‘questions to ask your hospital team’ which may be helpful. This includes questions about tests, active monitoring/ watch and wait, treatment, side effects and more.
We also have a page on essential information for people who have recently been diagnosed that may be useful - Just diagnosed with blood cancer: essential information | Blood Cancer UK
In addition to these resources, Myeloproliferative neoplasms ('MPN') Voice also have really good information About MPNs – MPN Voice and also have ‘buddy systems’ should this be helpful for you.
As @Duncan has already kindly linked to, we do have a page on Myeloproliferative neoplasms ('MPN')’s What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK but as you mentioned, you may need to find out from your team which Myeloproliferative neoplasms ('MPN') they think this may be.
We also have a page on Myelodysplastic syndromes (MDS) | Blood Cancer UK in case you need to refer to this at any point.
Do take care, keep us updated & warm wishes,
Emma (support services nurse)
2 Likes
@Duncan Thank you for all the helpful links, particularly the Myelodysplastic syndrome ('Myelodysplastic syndrome ('MDS')')/MNP overlap one - I thin it is the closest to my situation and help me feel less alone in my weird little bubble!
3 Likes
(copy of reply email which is failing to send so posting here)
Dear Emma,
Thank you for taking the time to email me.
Healthwise, I’m actually doing fine, I’m just trying to work through the alphabetti spaghetti of acronyms a,nd abbreviations that make up a totally new language for me.
December 2025, I was originally diagnosed with Systemic Mastocytosis however, a further result from my bone marrow tests changed the diagnosis to Complex Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN'). I was already aware that I had abnormally high raised eosinophils, but they have now stabilised - that is to say still very abnormal, but normal for me!
As I have no symptoms of anything that cannot be equally explained away by being a woman of maturing age, i.e. none of the classic rashes or itching etc that seem to be signs of Myelodysplastic syndrome ('MDS') or MNP, I almost feel a bit of a fraud, but also very thankful.
I have been on Watch and Wait for the last couple of months, but did fresh blood tests this last week ready for an appointment with my consultant haematologist this coming week.
Having recently found Blood Cancer UK, I have already found it helpful. Whilst I did initially jump from topic to topic - like a demented dragonfly - I have since gone back to read more specifically about what might apply to me. I must commend the website because it is easy to navigate and not over stuffed with more information that most people are able to cope with.
I have read the links you and others have provided, and it has helped me formulate my email to my specialist nurse/consultant prior to my appointment. They are both very open to having questions/concerns sent in advance so that between us we don’t overlook what I really want or need to know. I find this helpful, especially as I am single and attend the appointments alone.
I’m sure that Blood Cancer UK is going to be a helpful resource for me going forwards into this unknown future. Thank you, to you and all that work within it.
Kind regards,
Hepzibah.
3 Likes
Having read here about the 3 main types of MPNs, I sent an email over to my CNS in preparation for my Haematology consultant this week. asking which category I was, and also what made my diagnosis noted as ‘complex’. I got a swift response from the CNS and apparently I don’t fall into those categories - which is one of the reasons my diagnosis is marked as ‘complex’.
I’ve often felt in life that I was wearing a cloak of invisibility, it would appear I’m also woman of mystery after all! 
2 Likes
Hello again, really glad to have offered some useful information @Hepzibah.
How interesting that your CNS says your diagnosis doesn’t fall into any of the 3 main types of Myeloproliferative neoplasms ('MPN'). It’s great that you asked—now you know a little more, although admittedly about what you don’t have.
For what it’s worth, when I was diagnosed there was discussion about whether I had Essential thrombocythemia ('ET') or Polycythaemia vera ('PV'). I was given the impression from my haematologist that our overall diagnoses with whichever Myeloproliferative neoplasms ('MPN') are based on what’s observed at the source of blood cell production via the bone marrow biopsy (BMB). It may be that in your BMB there were indications of both Essential thrombocythemia ('ET') and Polycythaemia vera ('PV'), depending on which blood cells are being overproduced. Complex indeed, and far beyond my non-medical understanding!
I know what you mean about wearing a cloak of invisibility, what a great description. You may be unsurprised to read that folks living with Myeloproliferative neoplasms ('MPN') often describe them as invisible cancers as we can often carry on with little outward sign of these rare blood disorders.
It can be both helpful and frustrating for me, living invisibly! Sometimes I need to really stand up for what my body needs even if I seem outwardly fine, other times I have more energy than I expect but try to pace myself to avoid overdoing it to the point of fatigue.
May I just reassure you that you’re not a fraud, although we can be made to feel that way when others look at us incredulously. Something my lovely haematologist told me is that the moment we are diagnosed with blood cancer we become cancer survivors. You are surviving cancer, pretty amazing right?!
And like you say, having diagnoses like these really can be like an alphabet of acronyms. Glad to read your eosinophils have stabilised. Our blood tests are great for following along and noting how our bodies are doing. Maybe you get blood test results prior to speaking with your consultant, in which case that will no doubt help formulate questions to ask. Too high? Too low? How many might be just right?!
I hope your upcoming appointment goes really well @Hepzibah, and if you’d like to let us know how you get on I for one would love to know. No pressure of course. Do you have a loved one like a close friend who can attend with you for moral support and to offer a second set of listening ears to help take notes?
Anyway, thinking of you. Do take care and I’ll keep an eye out for your posts.
1 Like
Thanks Duncan.
I find it all fascinating and frustrating at the same time.
Fascinating because I curious and want to know and understand more.
Frustrated because I don’t know and understand more because it’s all another language. (I’ve never been good at languages!)
That being said, I also think that sometimes not knowing too much is a help and protection at times.
I’m happy to attend appointments alone, but I have requested the consultant to speak to me almost as a child - using words of not more than one syllable 
- impossible I know given the subject matter. She and the SCN are also open to emails, where I might give a summery of what I have understood, and ask any post appt questions.
2 Likes
Oh that’s excellent @Hepzibah about asking them to use simple language, I do that too as so much of it makes no sense to me. We’re not haematologists after all, so it’s helpful if our doctors use plain language.
That idea of emailing with your specialists is really great, and I note is not always offered to others around the forum, so I’d say take full advantage of bonus communication. Personally I find the more information I receive, the less anxious it helps me become.
May I just say that your language here is perfectly understandable, but I know what you mean about feeling frustrations. I hadn’t heard of half the blood cells I get tested for, let alone what they do or how many are normal amounts. It takes time but I promise it starts to make sense, and maybe even become a little routine!
Fascinating indeed! Hope it goes really well with your consultant @Hepzibah.
2 Likes
Hi @Hepzibah
Thank you for your lovely reply and I’m pleased to hear that you found the information provided useful 
It can be confusing trying to learn all the new words and meanings as you say, it is almost like a new language.
We are sorry to hear that it has taken a while for you to get your diagnosis and can imagine this was a daunting and frustrating time for you.
Thank you for your kind words regarding our website and glad to hear this has been useful in helping you further your understanding. It’s positive to hear that you have been able to communicate more with your team and hopefully they can provide individualised information for you and can create a clear plan going forwards.
Writing down any queries or concerns can definitely help guide conversations with the team and also allows them to know how you are feeling so that they can support you as best they can. Do let you clinical nurse specialist know if you feel you would like more support during appointments.
Do take care & keep us updated too,
Warm wishes,
Emma (Support services nurse)
4 Likes
I’ve seen my Haematology Consultant today. There are no changes in my blood results - they are still abnormal, but normal for me! 
I asked about what defines ‘complex’ in my Complex Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') diagnoses, stating that I now knew that both were made up of other subcategories. From what I understand, I don’t fall clearly in either category or subcategory. I’ve known for a long time that my white blood cells are off the charts, specifically the eosinophils, and apparently that is quite unusual in itself, putting me in a 1% category of blood cancer patients. That is also why I can’t find any real information to fit my case.
So, I’m back on W&W for a few months. I’ll still be trying to read up what I can, and take in as much as I can absorb, and hope that I can understand and retain a little, but I won’t be obsessed by it.
If I’ve only learnt one thing on this part of life’s journey, it’s that there is no ‘one size fits all’ when it comes to blood cancers!
2 Likes
Good stuff @Hepzibah, really so pleased that there’s a normality to the abnormality! Although of course I’d rather you didn’t have to tolerate any of this at all. I’m glad you know which blood cells are misbehaving as it’ll be easier to keep an eye on those in the various blood tests. I find that because I know which blood cells to look out for in my testing I usually feel more at ease with waiting for the results. Watch and wait sounds like a good place to be with a complex illness, but as your diagnosis is complicated it also adds complexity in understanding it like you say so well.
After greeting you the other day I tried to find an MDSUK group I’d seen shared as that may offer support for the Myelodysplastic syndrome ('MDS') aspects of your diagnosis. Other forum members with related diagnoses to you have shared this Myelodysplastic syndrome ('MDS') group before (I believe by @ChrissyD, do correct me if not), which may be of interest to you @Hepzibah. Here’s the group at MDSUK: https://mdspatientsupport.org.uk
Let us know how you get on please, and do keep looking around the forum for others who share your complexities @Hepzibah!
2 Likes
You’re so right. So much of our journey is the same but so much is different
2 Likes
Hello @Hepzibah
Just following up on @Duncan tagging me!
Your current diagnosis (though still not a firm one I understand) of an Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') overlap disease is a difficult one to navigate. Speaking as somebody with probably the commonest type of Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') overlap (Chronic myelomonocytic leukaemia ('CMML')), I can sympathise with not quite fitting neatly into one type or the other! Sadly, whilst there are great support groups for both these individual diseases, there isn’t (yet!) a specific support group for the overlap diseases, and probably unlikely to be one as they qualify as “rare diseases” so not that many of us are affected!
Your high eosinophil count and suspected mastocytosis seem to further complicate the diagnosis? I understand that people can (rarely) have more than one type of blood cancer which really muddies the waters for diagnosis!
I’m not sure where you are having your hospital care but maybe there will be (or has already been?) further investigation into your mutation status which might give more clues about your type of disease? This is either through a bone marrow biopsy or a blood test for Next Generation Sequencing (NGS) -usually only performed at specialist hospitals with genetic testing facilities.
Meanwhile Leukaemia Care have recently produced a booklet and other info specifically about Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') overlap diseases which may be more relevant to you.
I know the frustration of being neither one thing nor the other and I hope you will be able to find the best place to get your support. You’re right to ask for straightforward answers to your questions and I’m glad that you are not currently needing any treatment nor seem to have any bothersome symptoms? Long may that last!
Wishing you all the best
Chrissy D
4 Likes