New here? Feel free to introduce yourself here 👋

[Lucky]

@Jacq Welcome to the forum Jacqueline.

Yes, diagnosis is a bit of a shock at first. For me it was also a relief that it wasn’t worse (I have Polycythaemia vera (PV)). This relief has grown over time. It does take some time to take it on board though.

If you don’t already have it, you will find the booklet produced by Blood Cancer UK on Essential thrombocythemia (ET) very helpful. I can’t help much on clots; I know to seek medical help if I get any symptoms of stroke or sudden severe pain in my legs. Perhaps someone else can help or post a link to the appropriate web page.

Lucky

[Jacq]

Thank you, yes I have that booklet from the hospital.

[Lou-ET]

Hello everyone, my name is Louise I’m 44 years old and I’m from London.

In 2005 I moved to Cairo Egypt and married here. I work for a lovely international school as a teaching assistant. My life has taken many turns and on and off over the years I’ve had various health issues with PCOS and ectopic pregnancy, which left me without my left fallopian tube(benign tumor was the cause of this) I’ve had two eye operations to correct muscle weakness in both eyes, one aged 2 and one at 18. I suffered with PMDD which causes lots of symptoms and pains, I’ve also had bleeding on my ovaries with major cysts

The last few months I have felt overly tired and experienced foot and leg cramping and spasms like never before.

Also couple of months ago and just before our school summer holidays started, I felt very ill and experienced left sided stomach pain and vomiting. I thought I had a stomach bug (happens a lot here)and went to a gastroenterologist. He performed an ultrasound in his office and discovered I had a massive spleen and slightly enlarged liver. I was sent for a MRI which showed massive splenomagly 22cm and mild heptomegly. I was then sent for CBC and JAK 2 testing (jak2 negative). The CBC showed I had anemia as well as high blood platelets, monocytes, juvenile and high myelocytes. I was sent for bone marrow biopsy and it came back ok but showed presence of megakaryocytes and thrombocytosis but no lymphoma or leukemia.

Further investigation via blood tests specifically bcr/abl testing ruled out Chronic myeloid leukaemia but my doctor said I have Myeloproliferative neoplasms (MPN) either Primary myelofibrosis or Essential thrombocythemia. I will have another bone marrow biopsy in 3 months, monthly blood tests and an ultrasound to check spleen size.

I do have aches and pains in my legs, arms and lower back. Currently daily headaches and tiredness. My doctor put me 500mg of hydrea, 100mg aspirin, feburic (removes excess iron acid)and Sideral folic for the anemia.

My hematologist ruled out Chronic myeloid leukaemia and Polycythaemia vera (PV) but suspects E.T or Primary myelofibrosis.

I feel isolated with my diagnosis and most of my family live in London including my mum, 3 brothers and older sister. My husband has been great which I am thankful for. I just got back to work a few days ago after a summer of various tests and recovering from the bone marrow biopsy.

I’ve told some of my close colleagues, the school doctor and they are very supportive. The head of primary is also a great friend and has made sure my playground duties are in shaded spots as exposure to the direct sun in Egypt is harsh and my hematologist said to be careful due to possibility of secondary cancers mainly skin. Also he mentioned to watch for bleeding in the gums and from the nose. I have moments of feeling a bit scared but I’m doing my best to remain positive. It’s all a bit overwhelming.

I do hope everyone finds strength and bravery going through Myeloproliferative neoplasms (MPN) and I’m sending prayers.

[Harvillm]

My name is Mary and I was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2009. I have done very well and have not needed any treatment so far. My blood counts always look good at my six month checkups with my oncologist. However I have had an itchy skin rash for at least 8 years. I have seen dermatologists and allergists with very little relief. I am wondering about a possible connection with Chronic lymphocytic leukaemia (CLL) and what can be done about it.

[BloodCancerUK-SupportTeam]

Hi Mary,

Welcome to the Forum! I am glad you’ve found this space and thank you for becoming a member of the community.

Itching isn’t a common symptom of Chronic lymphocytic leukaemia (CLL), although it can sometimes cause skin problems, including a rash. It’s important that you get a diagnosis for this so that it can be treated effectively. If you haven’t already, it would be a good idea to discuss this with your haematologist or clinical nurse specialist, if you have one. They will be best placed to advise around whether these symptoms could be linked to your Chronic lymphocytic leukaemia (CLL). It may also be helpful to follow up with the dermatology team if the rash is unexplained and causing you discomfort.

Although you don’t yet know the cause, you may find our information on itching helpful for some practical tips from others about what can help: Itching | Blood Cancer UK

I hope this information helps. But, if we can be of any more help please do get in contact with our support services nurses: Blood cancer information and support by phone and email | Blood Cancer UK

I hope you hear from other forum members, too!

Take care,

Tom

Support Services Team

[Charlie81]

Hi everyone,

I’m Charlene and the beginning of the year at 43 was diagnosed with Monoclonal gammopathy of unknown significance (MGUS) and I’m so confused with all the mixed messages. I always feel tired ache and catch anything going around which takes 3 times the normal recovery time to start feeling back to pre illness state. I don’t want to keep calling the macmillen nurses but so confused of what’s normal and the true facts. Anyone else feel the same or any helpful advice tips or suggestions would be great.

Many thanks x

[Emma_BloodCancerUK]

Hello @Charlie81

Welcome to our forum.

We are sorry to hear about your diagnosis of Monoclonal gammopathy of unknown significance (MGUS) and that you are feeling confused.

We have a page on Monoclonal gammopathy of unknown significance (MGUS) that may be helpful as this has more details about the condition itself and how risk is determined - What is MGUS | Blood Cancer UK. In addition to this, our colleagues at Myeloma UK have a helpful info sheet on Monoclonal gammopathy of unknown significance (MGUS) which includes information about symptoms - MGUS Infosheet

It may be a good idea to keep a diary or journal of your symptoms. It’s important to update your team or GP/ healthcare provider who manages your Monoclonal gammopathy of unknown significance (MGUS) about any new or worsening symptoms so that they can help support you as best they can.

We hope others can share their experiences with you too.

If you would like to talk through any of this with one of our nurses, you can get in touch on 0808 2080 888.

Take care & warm wishes,

Emma (support services nurse)

[FrannyBee]

Hi. I have recently been diagnosed with Polycythaemia Vera, which, added to a diagnosis of Osteoporosis/Osteopaenia & Diverticular Disease, all within my 70th year, makes me feel like a medical textbook!

Unfortunately during my bone marrow biopsy, the positioning, curling in the foetal position led to a probable osteoporosis fracture of my thoracic spine, which means I’ve felt pretty rough for the past weeks. I’m due back at clinic on Monday after being given the choice between Interferon and Hydroxycarbamide. The consultant showed no preference.

I’m tending to go for Interferon after discussing with friends from my previous nursing career, but I have had bouts of depression in the past and have been on Sertraline once, decades ago. On reflection, my mental health wasn’t great during menopause. I made bad choices. But I had a lot of stuff going on. Since then I have been OK. So I think I’ll risk Interferon. Your opinions are very welcome though! On a more trivial side I’m hopeless at taking tablets!

Thank you for reading

FrannyBee

[Duncan]

Welcome @FrannyBee, I’m sorry to read of your diagnosis with Polycythaemia vera (PV) on top of those other health concerns. The side effects of that BMB sound horrible, poor you. I’m glad you’re on the mend.

You’ve found just the right place as there are many others around the forum living well with Polycythaemia vera (PV) and other Myeloproliferative neoplasms (MPN). Do look around for others who have posted about Polycythaemia vera (PV) and related Myeloproliferative neoplasms (MPN). Maybe you’d like to read the great Blood Cancer UK information about Polycythaemia vera (PV): Polycythaemia vera (PV) | Blood Cancer UK

For what it’s worth I was diagnosed with Polycythaemia vera (PV) in 2023 and wasn’t given any option other than hydroxyurea, which I’ve taken daily since. My newer haematologist reminds me that hydroxyurea has been used for decades by folks diagnosed with sickle cell and research shows they don’t have increased rates of cancers.

This feels rather reassuring for me. If I live for potentially decades then I’m glad to take medicine that has a lot of evidence-based research behind it. Personally I’d rather take a daily capsule than have to inject myself as I believe is the case with interferon. Interferon’s link to depression also put me off it—living with all this can feel grim enough without additional medicine-induced depression, no thanks!

Hydroxyurea has not been plain-sailing though as it caused severe fatigue in me which took a few months to fade. I know others around the forum have further/fewer side effects from it, so it affects us very individually.

Anyway, enough from me I’m sure! Glad you found us @FrannyBee, do please let us know how you get on.

[robbie6]

Hello, Robbie here, Im 62, live in an old cottage in rural mid Kent with my partner and spaniel. I work the land for a living, managing a country estate. I was diagnosed with Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)))) in June 2024 after a routine blood test having lost a stone in weight and feeling fatigued quite often, which I’d put down to age. In September of that year having had more blood tests I was given the prognosis that I have a tp53 gene mutation and a deletion in chromosome 17 which means’s that at some point the disease will become more aggressive, apparently generally though it’s a slow burner for most people. I’m on watch and wait but I’m doing my best not to think about the darker side. I’ve reduced my days at work from five to four to conserve my energy levels as my role is very physical hands on.A big financial hit but my health matters more than money in the bank. I continue to take the dog for long wanders, go birdwatching and fishing regularly and tinker with my old Land Rover. Filling my non working days enjoying the things which put a smile on my face seems to be the best therapy at present….hoping this state of play can continue for a while yet….

Wishing you all the best with your own journey.

Robbie

[GenesisDevice]

Hello @robbie6

Welcome to the forum, and thank you for taking time to send in your post

I am so sorry to learn about your circumstance.

I am also a Chronic lymphocytic leukaemia (CLL) patient and I can relate to a number of the points you make, in particular fatigue and weight loss. It is a journey as you say, and you are not alone, so please do feel free to let us know how you get on.

Its lovely to read how you are filling your non working days enjoying the things which put a smile on your face, that is a very positive attitude and one I admire. I too tinker in my man cave, and find comfort in the simple things this allows me to focus on.

Please take good care of each other

Kind regards

Mike

[robbie6]

Thanks for the reply Mike, life is a funny old game isn’t it? One minute you’re going along swimmingly still pretending that you’re a 22 year old and fit as a flea working all gods hours, then you get the news that things aren’t as they should be. The diagnosis and prognosis was a bit of a shock to be honest as I’m sure we’ve all said “why me?”. But yes taking a positive attitude and knowing things could be worse is to me important. Let’s face it there are are a lot of younger people out there in a much worse position than me, bless them all…I’ve had a great life, working with nature, planting thousands of trees in my life for the betterment of the environment. I’ve loved what I’ve done in life… and will continue to do for as long as I can…

Thoughts are with you and all of the other people with any form of cancer… keep the faith, keep on fighting

Love, hope, strength as Mike Peters put it

Regards

Robbie

[Ray1947]

I’m Ray, my wife 75 years old was diagnosed with Chronic lymphocytic leukaemia (CLL)/Small lymphocytic lymphoma (SLL) 12 months ago. We’re in the “watch and wait” Category. She is a two time survivor of breast cancer the last time was October 2022. she has occasional night sweats, fatigue, diarrhea and a few different types of rashes on her leg and back. Our next oncologist appointment is mid February.. she’s not ready mentally to start treatment and feels her issues aren’t related to Chronic lymphocytic leukaemia (CLL). Just wanted to feel my way in this site.

[Ceri_BloodCancerUK]

Hi @Ray1947, welcome to the community. I’m really glad you’ve found your way here.

That’s a lot for both of you to be navigating, especially with your wife having been through breast cancer twice already. Watch and wait can be such a strange space to be in as you’re dealing with a diagnosis but not actively treating it, and that uncertainty can be really difficult.

I’m sorry to hear about your wife’s ongoing symptoms. It might be worth reaching out to her team now to let them know about the symptoms - they may want to see her sooner or offer something to help with the discomfort, even if she doesn’t feel they’re Chronic lymphocytic leukaemia (CLL)-related. I’ll also just link in the wonderful @BloodCancerUK_Nurses in case they have anything to add.

In the meantime, please do have a look around the forum. There are quite a few people here in watch and wait with Chronic lymphocytic leukaemia (CLL), and you’ll find others who understand what this stage feels like. Feel free to ask questions, read through other people’s experiences, or just be here in whatever way feels useful.

Take care,

Ceri - Blood Cancer UK Support Service

[DuncanB]

Hi my name is Duncan and I live in the Highlands of Scotland.

I was diagnosed with Myelofibrosis in November 2023.

Various treatments received over the next 17 months. Some that provided positive steps forward and some that didn’t.

Against all odds, I had the opportunity to have a Stem Cell Transplant from an anonymous donor in April 2025. Probably the toughest health challenge I’ve ever faced.

Still in the recovery phase and working through my vaccinations.

Working every day on building up strength and stamina, through walking and low impact exercises at home.

The Blood Cancer UK cardio workout was an excellent starting point and I still do this a few times a week.

It’s been a challenging year for sure. At the same time I feel nothing but gratitude to my donor and the NHS staff who have been brilliant from the very start.

[Duncan]

Hello there from one Duncan to another @DuncanB ! Welcome to the forum, fellow Myeloproliferative neoplasms (MPN) survivor, we were both diagnosed in 2023 as well, although I live with Polycythaemia vera (PV) rather than MF.

I just wanted to greet you and say how glad I am that your stem cell transplant seems to be helping, although I appreciate how tough that has been. I’m in awe of your attitude and activity after such a challenging time. Keeping active has helped me too during disabling fatigue, but nothing compared to the treatments you’ve been having.

If you’d like you can find many others around the forum who live with Myeloproliferative neoplasms (MPN) like us, and some lovely folks who specifically have experiences of MF. Use the related topics at the bottom or the search box at the top and you’ll soon see these rare disorders are represented well here. Here’s the great Blood Cancer UK information about MF should you fancy a read: Myelofibrosis (MF) | Blood Cancer UK

Glad you found us @DuncanB, I hope the forum comes to be as helpful for you as it is for me. Do keep us posted about how you get on.

[DuncanB]

Hi Duncan

Thanks for your reply and welcome. Amazing we were both diagnosed in 2023 with an Myeloproliferative neoplasms (MPN). So many different variations.

Stem Cell Transplant was tough. A rollercoaster for sure. Fortunately the chat that they have with you before you decide gets you in the frame of mind that it’s going to be tough but a huge potential opportunity too.

Mindset a huge factor in both the transplant and recovery phase.

Thanks for the recommendations you made. I’ve been active in researching different information since diagnosed as I had little knowledge of blood cancer before diagnosis.

Hope that you are doing as well as you can with your Polycythaemia vera (PV) and are getting all the help and support you need.

All the best for 2026 @Duncan

[Duncan]

Oh you’re most welcome @DuncanB, and I’m really glad your specialists have been so helpful explaining stuff—having a supportive haematologist really improved things for me and has set me up to cope better in the long-term, I reckon.

I’ll look forward to seeing you around the forum Duncan, and do please feel free to offer your own support as your transplant experiences will likely be really helpful to others going through similar treatments.

Happy new year to you too, let’s hope 2026 is a good one!

[DottieB]

Happy new year @Duncan

Best wishes

[Duncan]

Same to you dear @DottieB!