Thanks for the advice Duncan 
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Hi David,
I was diagnosed with Monoclonal gammopathy of unknown significance ('MGUS') in 2023. How are you doing now ?
I find Monoclonal gammopathy of unknown significance ('MGUS') a really strange diagnosis. Probably like most people Iād never heard of it before. My diagnosis happened after an L5 fracture in my spine, my further tests showed healthy bones, and I had never had a fracture before. It happened after an accident. I am 61 now.
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Hi Everyone,
My name is Kim and I am 61. I was diagnosed with Monoclonal gammopathy of unknown significance ('MGUS') in 2023. I just wondered how everyone is doing ? Also, how many of you have a different diagnosis now from Monoclonal gammopathy of unknown significance ('MGUS'), and how you have been helped to understand everything and deal with changes that you have experienced ? Thank you for reading this. Kim
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Hello there @Kimberley, welcome to the forum! Iāve replied more fully to your other post, but Iām sure youāll hear from others. When you find someone youād like to respond to just add an @ before their username and they should get a notification. Glad you found us here!
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Hi @Kimberley Great that you found this group. I am not familiar with Monoclonal gammopathy of unknown significance ('MGUS'). I was diagnosed with Essential Thrombocythemia (Essential thrombocythemia ('ET')) in Fall of 2025. I had never heard of my condition before my diagnosis. For me, getting great medical care, and gaining information on this site and in other places has been very helpful, learning that I am not alone is helpful too. I am 71 and have some other medical conditionsābut overall I am living a great, full life. I still work full time as a college professor and have been able to get help and support from my colleagues so that I can find ways to work shorter hours, because fatigue is a major part of Essential thrombocythemia ('ET') and its treatment. Since I am a health researcher, I also really enjoy reading articles in the medical literature to better understand my condition. I think all of us can use whatever strengths we have to apply to these conditions. I have had to learn to ask for help when my fatigue does not allow me to do chores like mowing my lawn on hot days, one of my adult sons has stepped up.
Best wishes and I believe you will find this a most welcoming place.
Bill
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Hi Bill,
Thank you for your lovely welcome to this forum.
Iām so pleased to read that you are continuing to enjoy your life so much, thatās great news ! Itās also lovely to read that you help with the lawn mowing. That can be difficult, particularly in such hot weather as we have had here recently.
I also like to keep up to date with the latest medical news on my condition, along with others.
All the best, and thank you once again for your lovely welcome . Kim
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Hello everyone I am new to the forum, although I had a diagnosis of Essential thrombocythemia ('ET') back in 2020 it never really sank in, covid restricted in person consultations and so just got on with taking the prescribed aspirin and regular platelet blood tests. Now I am approaching a certain age discussions have started on a new course of treatment which has led me to find out more and understand my condition. I am at the stage of trying to know what I want to know, if that makes sense.
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Hi @Terri2 and a warm welcome to the forum.
I have a different blood cancer and there are lots of Essential thrombocythemia ('ET') diagnosed people here on the forum.
We canāt offer medical advice but you can reach out to the @BloodCancerUK-SupportTeam or @Ceri_BloodCancerUK who will be able to direct you to the appropriate person to speak to.
Alternatively you can call 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.
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Hello there @Terri2, welcome to the forum, although it sounds like youāve been living well with that diagnosis for years now, good stuff! Iām glad youāve not needed treatment beyond the blood testing, although Iām sure the diagnosis alone has been a lot to contend with.
Iāll share the great Blood Cancer UK information about Essential thrombocythemia ('ET') for you here in case youāve not read it. Perhaps youād like to read the information about treatments for Essential thrombocythemia ('ET') too: Essential thrombocythaemia (ET) treatment and side effects | Blood Cancer UK
I see dear @DuncanB has already greeted you warmly and Iād like to reassure you that there are many of us around the forum living well with Myeloproliferative neoplasms ('MPN') like Essential thrombocythemia ('ET') and the Polycythaemia vera ('PV'). If youād like to reach out to others you can use terms like Essential thrombocythemia ('ET') or Myeloproliferative neoplasms ('MPN') in the search box at the top. Hereās a thread of lovely forum members who live with Essential thrombocythemia ('ET') who Iām sure would offer their tips: ET diagnosis finally sinking in - #769 by Duncan
Blood Cancer UK also have lovely specialist nurses who can answer medical queries and offer further resources. If youād like to call them their free number is 0808 2080 888.
Hope that helps a little @Terri2, I wonder what treatments youāve been offered? Iām sure youāll find others here who can offer their advice and support. Do please keep us posted about how you get on!
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@Duncan and @DuncanB thank you for the warm welcome, I will certainly read the information on Essential thrombocythemia ('ET') and look at some the more specific threads . I have been offered hydroxycarbamide so am trying to find out more about it and how others find the treatment. My medical team are very helpful and have sent some literature and do respond to my questions, I will be seeing my consultant in September so want to be prepared with the questions I want to ask. Also, trying to find the best way to tell family members because as soon as you say the word cancer they act differently.
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Hello @Terri2
Thank you for taking time to send your post into our forum
Iām sorry to learn about your circumstance. My heart goes out to you.
Like some of the other people who has responded to you, I have a different condition, but we are all here for each other and Iām glad you found us
Having your diagnosis during covid must have been quite strange, no one to have a face conversation with, no one to ask questions - but I am confident your medical experts are allowing you time to get the answers to any questions you may have.
I found that it became difficult to formulate questions about something I didnāt know much about, and so I found (and still find) this forum such a powerful source of information, and I am confident you will too. That having been said, please always refer to your medical experts in the first instance. As a forum support volunteer we are not trained to offer any medical advice.
Donāt forget however if you prefer you can always 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 ā 4pm
- Tuesday: 10am ā 7pm
- Saturday: 10am ā 1pm
- Sunday: Closed
- Bank holidays: 10am ā 1pm
Alternatively, call us anytime and leave a message and weāll get back to you within one working day.
Please do feel free to let us know how you get on
Kind regards
Mike
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@GenesisDevice thank you for the welcome and advice I have requested the Essential thrombocythemia ('ET') information booklet and hope to learn more and my medical team are good at answering questions and providing information but it is good to read the experiences of others especially as I donāt like taking medication and am wary of potential side effects. I will keep reading, following threads and asking questions.
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@Kimberley Hey Kim, I have known many people who live a good quality of life even with chronic illnesses. One key is finding out what we can still do, and trying to put our efforts into those things, instead of getting too tied up in what we canāt. Having doctors and other healthcare providers we can trust is also very important. Hang in there and I am sure you will find a lot of information and support here. Bill
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Hi @Terri2 welcome to the forum. I see you have already been greeted by a number of folks. I was diagnosed with Essential Thrombocythemia in Summer 2025 at age 70. I was referred to a hematologist, and after comprehensive blood testing they started me on Hydroxyurea. In looking at the guidelines for treatment of this condition being older can tip the balance toward using this treatment. Honestly I donāt know if I have had any side effects from this medicationāmy only difficulties are with fatigue, which can also come from the Essential thrombocythemia ('ET') and from other conditions (I have coronary artery disease as well). But Iām still working full time and leading a full live.
I am seeing a very capable hematologist, they have experimented with what dosage works best to keep me within the normal range. They are very clever about thisā¦ I think I started at one a day, then one a day plus several eveningsāthey continually make minor alterations when I see them on a monthly basis. I am glad to take itāmy readings of patient information packets and research articles makes it pretty clear that taking this can help prevent heart attacks and strokes. I have had plenty of side effects from other medications (like steroids for gout, yikes that really disrupted my sleep and gave me uncharacteristic anxiety) but this has been pretty benign for me.
Best wishes and I know I have gained a lot by learning about othersā experiences and the sense of support that this site provides. Bill
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@ProfessorJAK thank you for your lovely message, it is reassuring to hear otherās stories and experiences. It is good to know you are getting on well with the medication and continuing to work. I will let you know how I get on after my consultation.
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Thank you once again Duncan !
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Hi Bill,
Yes I agree with you entirely about āhanging in thereā. This group seems very welcoming, and Iām sure I will benefit a great deal from joining it.
Many thanks, Kim
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Hello,my name is Martin and I have been diagnosed with Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') overlap and thrombocytosisin the last year. Anyone else with this cancer who would like to chat with me? Thanks.
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HI @Terri2
Welcome to our forum and thank you for posting. I can see you have already been given lots of great support and advice by our wonderful forum members.
I just wanted to pop on and say the nurses would be very happy to talk things through with you regarding your condition and treatment, if this is something you may find helpful. It is completely normal to want to find out more and understand your condition and it can take a long time to process. Our number is 0808 2080 888 and we are open until 4 pm today.
Take care
Fiona (support services nurse)
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Hi @gracemead and welcome the forum.
Iām sorry to read about your diagnosis.
There are so many variations of cancers and Iām sure you will find lots of support here.
Everyone on the forum is dealing with their own challenges and a great source of wisdom and experience.
Take care
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