Hello - adult child diagnosed with poor prognosis Acute myeloid leukaemia (AML) in 2024. Iāve been on here quite a while but have never posted. Didnāt want to āhijackā anyone elseās story. This is an incredibly informative and helpful website, especially this forum where experiences can be shared. You are all so brave! I have especially followed @Toadmum (I hope you werenāt finding me āstalker-ish!ā) and @SarahMum as your stories mirror ours in so many ways. In any case, just saying hello and making myself known a bit. We have hit a terribly rough patch with treatments recently. I have found comfort reading @Erica supportive comments, too.
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Oh @EverHopeful hello and thank you so much for posting and a great big welcome to our forum family.
It sounds as if you and your adult child have had your rough patches too.
I expect those maternal ties are so strong, yet you are also so powerless to make things better.
Always feel free to just read posts on here, but I would really like to hear more about you.
I find this forum is the one place that I can say how it really is to be me.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Please do look after yourself as well as you are trying to look after your child.
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You would never be hijaking a thread! Feel very welcome to post along on mine about your experiences. The more the merrier - it certainly helps me hearing about others experiences too!
How are you doing? Truly sorry youāre also navigating this but a warm welcome, and a quick note to let you know that youāre not alone.
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Hi @EverHopeful
I am sorry to learn of your situation and feel free to use this safe space as you wish. You would never hijack a post. We all seem to jump in and post wherever but someone will always pick up your post and get back to you. It is usually the lovely @Erica who is a very special person 
You will know from my post that we also had a poor prognosis. It seems a lot of people do with blood cancers. But none of us will know the outcome, not even the most highly trained medical professionals. I think a big part is being positive and taking each hour as it comes (easier said than done on some days I know?!)
Feel free to keep using this forum as you wish. Take good care of yourself in all of this too.
Shout if you need āowt. We are all here for you.
Sending love and positive thoughts
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Hi everyone - Iām Susie and my husband was diagnosed with Myelodysplastic syndrome (MDS) about 18 months ago. Iām trying to find out as much as I can about Myelodysplastic syndrome (MDS). My husband is now 69 years old and is still pretty fit at the moment, although very tired. He is a keen cyclist, walker, canoer etc. so heās finding it difficult to lose his fitness so quickly. Thank you all for posting. Sending best wishes to you all. Sorry if I am posting this in the wrong place.
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Hi thereā¦
My nameās Aidan. 61 years old, living in London. Originally from Ireland.
Generally Iāve always been in fairly good health. But shortly after COVID hit I noticed that I was beginning to experience some shortness of breath and it became sufficiently serious that I referred myself to my GP. There then began a whole series of tests to try to determine the cause. Lung function. Heart function. (Which uncovered a heartblock and some coronary artery issues - neither of which required surgery, although I have been prescribed statins and beta blockers.)
About a year after this series of tests, etc started, a new GP arrived at our local medical centre and while she was familiarising herself with the patient list she spotted that in one of the full blood counts which had been requested, my platelet count was a little high (around 460). She requested a further blood count and this confirmed that my platelet count remained outside the normal range and was, in fact, climbing (it now stood at around 480).
On the basis of this she set up a referral to the haematology unit at our local hospital.
I honestly had no idea what to expect - never having been referred to a haematologist before and was quite blasƩ when I rocked up to my first appointment. That sense of blasƩ soon disappeared as I read the posters pinned up around the waiting room - all of which referred to either sickle cell anaemia or - gulp! - blood cancer.
And so my turn came to speak to the consultant haematologist. He reviewed my notes and said that on the basis of the quite bland info to date, it would appear that I might have essential thrombocythaemia. But first he would have to order some blood tests to see if I had the JAK2 marker. If this was the case, then he would order a bone marrow biopsy. Suffice to say that both tests confirmed Essential thrombocythemia (ET).
At the time I was aged 59 and the consultant explained that once I turned 60 - assuming my platelet count remained at its current level, I would start treatment.
The āhappyā day arrived and within a few weeks - in September 2024 - I found myself in the consultantās office again. He explained that there were - theoretically - two treatment options available; interferon-alfa and hydroxycarbamide. However, there was a worldwide shortage of the former. I could - if I wished - delay treatment until interferon-alfa became available again. However I decided to start treatment with hydroxycarbamide.
My experience has doubtless been similar to that of many others. I started on a regime of 500mg per day. My next check-up showed that this regime had zero impact on my platelet count. And so the dose was increased to 500mg Monday to Friday with a 1000mg dose at weekends. This started to bring my platelet count down and so I was prescribed this dose for a further three months. However at the next check-up the downward trend had ground to a halt and so the dosage was increased by a further 500mg each week. This has finally brought my platelet count down to 390 and therefore the haematologist has confirmed that I will remain on this regime (500mg Monday to Thursday; 1000mg Friday to Sunday) until further notice.
A few observations. If anyone had told me that I was going to receive a blood cancer diagnosis, I would have imagined that I would feel a sense of despair, sadness, panic. However I found that, in reality, I didnāt feel any of those emotions.
I was a little concerned about how the hydroxycarbamide would impact on me and I was very nervous about taking my first dose. It hasnāt been absolute plain sailing. Each time the dose was increased I took a few weeks to get used to the side effects. But now - after acclimatising - my current dose of 5000mg per week tends not to produce any side effects other than occasional feelings of mild and quite tolerable nausea and occasional fatigue.
However one of the things I find hardest to deal with is when friends or family react with surprise when I tell them that I am living with a blood cancer. āBut you look well!ā My response, which Iāve developed over the past year or so, is to say (either aloud or āto myselfā) is ā¦ āI might look well. And thanks for saying so. But I have a blood cancer diagnosis and Iām taking pretty strong medicine to manage it.ā
So, thatās me and thatās my brief potted history. I look forward to perhaps becoming reasonably active in this forum which is a great source of support, advice and reassurance for many.
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From one of the coloniesā¦
Age 87. Myelodysplastic syndrome (MDS) since age 70, attributed to water contamination many decades ago. Treated with a very costly combination of Neupogen, Aranesp, and Luspatercept, though that cost is borne by the contaminatOR of said water, who acknowledged responsibility.
All the ordinary miseries; poor clotting, terrible oxygen transport and delivery, fatigue (far beyond that of a typical octogenarian), diminished libido, petechiae, the occasional nosebleed. That aggressive therapeutic protocol has stopped the decline, and it appears that my death will be caused by Something Else. Still awaiting my first cardiovascular incident, so Iām optimistic. 
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Hello @notaguru - a huge welcome to our forum - Iām so glad that youāve found us. Itās a great place to connect and share with others with similar experiences. Thank you for telling us a little bit about yourself. It sounds like youāve have a lot to manage, but I can sense your underlying positivity and optimism.
Take good care of yourself and please do keep posting
Maggie
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Hi. Iām Gill and Iām 74 years old. I was diagnosed with Monoclonal gammopathy of unknown significance (MGUS) several years ago and my GP, who has now left the practice, told me to request a blood test every year. I kept asking for it to be included with my Healthy Heart clinic blood test but until I made a terrific fuss this year it hadnāt been done - they used Covid as an excuse. As far as I can make out from my blood test results the condition hasnāt progressed, at least not significantly, thank goodness. As others have said, there are, supposedly, no symptoms, but my husband was taken ill recently and spent some time in hospital. Also he has a very bad knee, bone on bone, so needs a lot from me helping him dress, dry his feet and general fetching and carrying - and Iām SO tired. Wondering if this is something others have experienced with Monoclonal gammopathy of unknown significance (MGUS), periods of extreme tiredness to the point where all they want to do is sleep
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Welcome @GillBear to our community here at Blood Cancer UK! Itās good to have you with us, though Iām sorry to hear about everything youāve been going through lately.
It sounds incredibly tough, not only managing your own health but also caring for your husband. Itās completely understandable that youāre feeling so tired.
Itās great news that your blood test results show no significant progression of your Monoclonal gammopathy of unknown significance (MGUS), especially after you had to push so hard to get those checks done.
Given everything on your plate ā the physical demands of caring for your husband, the stress of his health issues, and your Monoclonal gammopathy of unknown significance (MGUS) diagnosis ā itās important to consider that stress, lack of sleep, and the sheer effort of being a caregiver can all contribute significantly to feeling exhausted.
Youāre doing an amazing job. Please donāt hesitate to share more about your experiences here; our forum is a safe space to connect with others who understand.
You might also find it helpful to speak directly with the nurses on the Blood Cancer UK Support Line. They can offer emotional and practical support, and provide information about blood cancer. Itās a free and confidential service.
You can reach them for free on
0808 2080 888. You can also find more information about their support services on the Blood Cancer UK website: Blood cancer information and support by phone and email | Blood Cancer UK
Do keep in touch.
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Thank you so much for the support. My husband is younger than me and is still trying to work, but his knee problems, plus being in hospital with pneumonia, chest infection and pleurisy, has meant he hasnāt worked for the 2 weeks weāve been back from holiday, and itās causing him stress, and that makes him irritableā¦.understandably. Heās an angel really! I thought I was sleeping well but I now realise that Iām awake whenever he is because Iām watching and listening for him getting up in case he needs help. Weāll get there, but itās so good having someone to talk to who understands.
Many thanks again
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Hi, Iām Marilyn and my mother has Myelodysplastic syndrome (MDS) and Myeloproliferative neoplasms (MPN) overlap syndrome. She was diagnosed 2 years ago now and until recently has been living life to the full. A month ago though she started to get terrible pain in her right leg. Her GP told her it was sciatica. However, for the past two weeks she hasnāt been able to get out of bed. She is constantly in pain (crying,screaming out) I called an ambulance and she was taken to hospital where they found nothing and told her itās not sciatica. They only gave her an X-ray. She hasnāt fallen it just suddenly started. She is now on OxyContin (was on Morphine but taken off due to kidney function) itās not helping with the pain. She isnāt eating as feels sick all the time even though taking antisickness they prescribed her. I just donāt know what to do. Itās breaking my heart seeing her like this. Has anyone else suffered with pain in their legs all the time?
Thank you for any advice or help you can give me.
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Dear @Mazmum - welcome to our forum. Iām so sorry to hear that you Mum is struggling with pain in her leg. It is so difficult to see a loved one in pain.
Iām sure that others with similar experiences will come forward. In the meantime, have you gone back to your Mumās GP to explain the ongoing problems she is experiencing and have you also spoken to the team that looks after her for the Myelodysplastic syndrome (MDS) and Myeloproliferative neoplasms (MPN)? You might also find it helpful to talk things through with one of our specialist nurses on 0808 2080 888.
Do take care and let us know how you and your Mum get on.
Maggie
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@Aidan Thanks for posting.
This sounds similar to my own experiences. I found taking the hydoxycarbamide last thing at night meant I slept through the nausea. You may already be doing this of course.
I was given the same choice of treatments and among the wealth of information was the comment that most young people choose Interferon Alpha. after long consideration, I chose hydroxcarbamide but after some months had to discontinue it due to side effects. I then went onto interferon and was again told that most young people prefer this treatment. The penny dropped! They meant me! Having seen my 60th birthday off some years ago I was both amused and flattered. Thinking about it, whenever Iām in the haematology oncology waiting room I am one of the younger patients.
Lucky
Hello to All, My name is Jonathan Iām 67 years old, live in northern california and have recently been diagnosed with polycythemia vera. Iāve been doing a huge amount of researching and teaching myself about this desease and ran into this āforumā. Iāve been interested in communicating with others in this same boat. One of the things Iām very interested in is how much some of you folks have changed (or not) your eating habits? On top of the Polycythaemia vera (PV) Iāve always suffered from high cholesteral, so Iāve cut way back on red meat, cheese, dairy, eggs etc. Iām also now taking lipitor along with my baby aspirin and hydroxyurea. My eating habits are quite healthy I feel, Iām not overweight and am feeling actually pretty good. I do however tend to indulge in small amounts of sweets and ācravyā salty snacks here and there. My feeling is, I gotta live life! So i guess my question isā¦ā¦ā¦..is there someone on here thatās been dealing with this for a lot longer than me that has an opinion on how far to take super healthy eating habits? Hmmmmmm?
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Hello there @jonnyok, fellow Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV)))) survivor and Northern California resident. Iām so sorry to read of your recent diagnosis, I remember how much there was to take in when I was diagnosed with Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))) in 2023.
Just wanted to pop in to say Iām glad you found the forum and maybe to have a look around as youāll find many of us living well with Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))) and other Myeloproliferative neoplasms (Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN))) like Essential thrombocythemia (Essential thrombocythemia (Essential thrombocythemia (ET))).
As a Brit living in California I note from other forum members that treatments between the US and UK seem nearly identical, but the process of diagnosis is often a little back to front with bone marrow biopsies being done around the UK after the Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))) has been diagnosed.
Anyway, as to your question about diet, I was vegan before diagnosis with Polycythaemia vera (Polycythaemia vera (PV)) and my second haematologist noted that I took a daily multivitamin and recommended I changed to one without iron as it was likely affecting my blood overproduction. I also take a statin due to a previous heart attack and genetically high cholesterol, plus the aspirin and hydroxyurea like you.
May I ask how the hydroxyurea has affected you? It pretty much disabled me with fatigue initially but my body gradually got used to it over a few months, and Iām thankfully back to my pre-diagnosis energy levels. Hopefully youāre doing well with it, and still able to enjoy our beautiful countryside!
One last bit of advice from my haematologist is to be very careful in the sun as the hydroxyurea makes our skin photosensitive and more prone to developing skin cancer. Perhaps youāve always been careful in this Californian sun but I had to rapidly update my rubbish British skincare routine!
Iām sure thatās more than you wanted to know @jonnyok, but do keep looking around the forum. Glad you found us!
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Oh and perhaps you were recommended by your specialists to check out LLS but Iād recommend them too, kind of like BCUK for the US.
There are annual blood cancer conferences which tend to be held in San Francisco, if thatās of interest to you. Also they have advice about health insurance, treatments, all sorts of great US-specific support: https://www.lls.org
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Hello Duncan, Thanks for the reply and input! Yes it has been quite a mental adjustment dealing with this stuff. I guess I feel like after 28 years in the San Francisco Fire Dept., and seeing countless of my peers passing away from various other types of cancers due to FF exposure issues, I figure Iām fairly lucky, so far, Knock on wood. I actually feel pretty much normal, physically. Not really any of the symptoms associated with Polycythaemia vera (PV)ā¦yet. I do need to be more diligent in the sun exposure part. Outside of firefighting, Iāve spent my whole life surfing all over the world. So man, my skin has already taken a beating exposure wise. So your an Englander, living in Nor Cal huh? Interestingly enough, I have a sister who, like me, was born here (San Francisco) who has been living in England for ā¦40 years? Hope to keep in touch and keep on keeping on!
Jonathan (now living in sonoma county)
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Oh youāre most welcome @jonnyok, share and share alike I always think, especially with rare stuff like what weāre living with. So sorry to read of your peers experiencing other cancers, but sadly not a surprise. Unsure what could have caused my JAK2 gene mutation and Polycythaemia vera (PV), but my haematologist says itās more likely something from childhood (perhaps tobacco smoke inhalation from parents) as it would take time for the mutation to occur and Iām considered a young diagnosee. Your exposure to carcinogens at work sound like the kinds of environmental carcinogens my haematologist mentioned.
Like you I feel lucky, strange as that may seem! Letās hope you donāt get the dreaded fatigue or other side effects. Keeping active is one of the best things we can do apparently as itāll help offset fatigue, according to research. Getting early morning daylight into our eyes helps our circadian rhythms and thus sleep. Doing some slow sort of exercise like yoga or Pilates is meant to help too.
But as you know, we have the amazing hills, forests, rivers and coast around us here. I was over in Sonoma only last week, funnily enough, camping and hiking and eating far too much! Lucky you to live in my favourite Bay Area county, Iām in the East Bay envying your proximity to the Russian River! Been here for a decade now, originally Welsh so not quite an Englander, but no one here seems to have heard of Wales nor our accents and usually guess Iām Australian hahaha
Lovely to know youāre another Bay Area Polycythaemia vera (PV) survivor on here, do keep us posted about how you get on @jonnyok. I hope youāve got good access to your specialist Jonathan, I know itās harder the further away from big cities we live, especially with these rare disorders. Iām lucky to see my haematologist and phlebotomists in Oakland, just a short bus ride away.
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Hello, my name is Jacqueline.
I was diagnosed with Essential thrombocythemia (Essential thrombocythemia (ET)) on Tuesday. Bit of a shock, but as the appointment was at the cancer centre at the hospital, I probably subconsciously knew something wasnāt right. Prescribed low-dose aspirin and booked to have another appointment and blood test there in November. Iām at high risk of blood clots as Iām 71, and have high blood pressure, but so far a ā lowā above average platelet count (440). Just wanted to ask what should I be aware of with clots? Iām glad I have found this through the information leaflet . Iāve never posted on a forum before.
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