Thought I would update my journey. Female 75. 4 years Monoclonal gammopathy of unknown significance (MGUS). Paraprotein started at 8 , now 12.5. Tested positive for Jak2. Had a bone marrow biopsy last week. 6 monthly blood tests. Suspect have an Myeloproliferative neoplasms (MPN). Any thoughts on where I am please.
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Hi @Juliet3 good to hear from you again.
Please do let us know what happens at your next appointment when you get your results.
I find it helps me to write down all my fears, questions and practicalities for appointments.
Look after and be ever so kind to yourself
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Hi @Juliet3,
Thank you for updating us. Sorry to hear that you now have suspected Myeloproliferative neoplasms (MPN) as well as Monoclonal gammopathy of unknown significance (MGUS). This is understandably a very worrying time for you.
I can see that you have posted on another thread about your headaches. Do the team think this might be related? I have enclosed some information on Myeloproliferative neoplasms (MPN) here which you may find helpful Blood Cancer UK MPN
We are unfortunately unable to comment on your diagnosis at this point but would encourage you to discuss all your worries and concerns with your haematology team. Do you have a follow up appointment with them soon?
I hope others on the forum will share their own experiences with Monoclonal gammopathy of unknown significance (MGUS) and Myeloproliferative neoplasms (MPN) with you.
Please be kind to yourself and know that you are not alone. You can get in touch on 0808 2080 888 if there’s anything you’d like further information about, or if you ever just want to talk things through.
Take care
Fiona (support services nurse)
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Thank you Fiona for your response. I don’t have a team, only a Consultant who phones me twice a year. He has a strong accent and I have to concentrate hard on my mobile phone to hear him. It also make it difficult to ask questions.
I am not sure where I should be posting and forum etiquette etc.
The results of my BMB and Spleen Ultrasound will be available on 5th May.
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Maybe request a face to face appointment with your consultant for the 5th May? You can call the haematology secretaires and request this if easier for you.
You can post or reply to any thread you wish to. No etiquette police here 
Please keep posting and let us know how you get on.
Kind regards
Fiona (support services nurse)
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Fiona I have phoned the Secretary several times. Been told you only get face to face if you have Cancer. Need that diagnosis first.
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Diagnosed today. Essential thrombocythemia (ET) Jak2. Will now get a face to face appointment with Haematology at last. 3 weeks from now at my local hospital. I will be able to ask questions that are difficult over the phone. My numbers for Paraprotein in Monoclonal gammopathy of unknown significance (MGUS) and Platelets in Essential thrombocythemia (ET) have risen quite high in 8 weeks. I will be started on the Chemo tablets ASAP. I am resigned to it but very nervous of potential side effects of the tablets.
I would appreciate any comments or advice from members who have it.
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Hello there @Juliet3, I’m so sorry to read of your diagnosis with Essential thrombocythemia (ET). It seems like you might have known this was coming due to suspecting an Myeloproliferative neoplasms (MPN), but now at least you know what you’re living with, which for me felt helpful after being diagnosed with Polycythaemia vera (PV).
Here’s the Blood Cancer UK information about Essential thrombocythemia (ET), should that be of interest: Essential thrombocythaemia | Blood Cancer UK
I wonder if this Essential thrombocythemia (ET) diagnosis will affect the Monoclonal gammopathy of unknown significance (MGUS) diagnosis and treatment? I’m not a doctor so it might be worth checking with your specialists if you still have a Monoclonal gammopathy of unknown significance (MGUS) diagnosis. Some of these blood disorders transform from one to another, while others can coexist with somewhat overlapping disorders. I’ve noticed a few folks around the forum who have double diagnoses.
For what it’s worth, I’ve taken daily hydroxyurea since diagnosis and after a few months of pretty horrible fatigue it settled down and I’m back mostly to my pre-chemotherapy energy levels.
My haematologist reminds me that people living with sickle cell disease have been taking hydroxyurea for decades as their main treatment with no increased incidence of developing other cancers, should that be a concern.
Other forum members have quite different experiences of taking chemotherapy like hydroxyurea and other cytoreductive medicines, so perhaps have a look around the forum for others living with Essential thrombocythemia (ET)?
Hope that helps a little @Juliet3. Do please let us know how you get on.
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Thank you Duncan. I wonder too if Monoclonal gammopathy of unknown significance (MGUS)/Essential thrombocythemia (ET) will progress but no point worrying. If I can tolerate the tablets (same as yours) I will be happy. My energy levels are poor at the moment, hope they don’t get worse
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You’re most welcome, and I tend to agree—it’s not worth spending time worrying about what might be when what we live with is enough already to be getting on with! I love that approach, it’s helping me at least.
Something else which might be of comfort is that if hydroxyurea doesn’t agree with you then there are plenty of other medicines to swap over to, as can happen with those of us living with Myeloproliferative neoplasms (MPN). I note there are forum members who started with one medicine, swapped to another, and then changed back or to a different one altogether during their treatments.
I’m also sorry to read about your poor energy at the moment. Have you found anything that helps, aside from resting? When my fatigue was at its worst I’d still try to do some kind of movement every day, even if it was just popping over to the corner shop or taking the dog out briefly for his morning ablutions. Counterintuitive as it might seem, research shows that doing slow exercise like yoga or Pilates can help improve energy levels during cancer-related fatigue. I’m sure you know what sort of activities you enjoy—try a little of those!
Anyway, I’ve gone on again. Maybe keep a diary of how you get on with the hydroxyurea and then if it’s disagreeable you can show your haematologist what side effects it’s causing.
Be well @Juliet3 and please keep us posted.
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Hi @Juliet3 Gosh diagnosed today perhaps just take a bit of time to come to terms with everything that is happening.
I am all for having a plan, but I also like to take things a stage at a time to make it manageable for me.
I am not surprised about you being nervous about side effects.
You have some time to write your fears, questions and practicalities for your next appointment.
If you have the contact details of your specialist nurse they are someone you can always contact with questions.
Be really kind to yourself and look after yourself and keep posting, I hope others will be able to share their personal experiences
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Thank you. Good advice about the diary Duncan. I am constantly exhausted as I have a few other new medical conditions. I like to walk but not managing it at the moment. Hope I get back to it.
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Thank you Erica. I understand taking it a stage at a time. It is too easy to go down the rabbit hole. I have told my family but am deciding if I want to tell anyone else. I don’t want it to define me.
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Hi @Juliet3
I’m due to start the hydro tablets next year but have started listing questions as I’m not sure I want to take chemo. I’m hoping one of the other options arnt a chemo based drug but will find out in my next apt which is next month.
Will update after. If I remember that is as my memory is shot!
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I am really scared as I have problems with most medications. However there are lots of positive comments about the medication.
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Oh @Juliet3 feeling really scared is not nice.
Perhaps just keep talking to your specialist nurse and medical team about how you really feel and any decision you make you have to feel that it is the right one for you.
You say that there are lots of positive comments about the medication, but if you are anything like me I would be searching and focusing on the one negative comment that I could find.
If you would like to chat anything through then the Blood Cancer UK support nurses are there for you on 0808 2080 888.
Be ever so kind to yourself and please do keep posting how you are doing.
Referring to your earlier post of a week ago I am wondering if you are feeling trapped down that rabbit hole at the moment?
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Hi Erica, I have not had my appointment since diagnosis yet. It is another 2 weeks. I don’t know going forward if I will have a specialist nurse or not. It is still new to me. One week on from diagnosis, I am more accepting. I have decided to only tell only family and a few friends. Don’t want sympathy or people looking at me each time we meet and feeling uncomfortable.
As suggested by a member here, I have bought a notebook and will document my journey and symptoms on the medication.
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Hi @Juliet3 I expect you might get a specialist nurse at your appointment in 2 weeks.
Give yourself plenty of time to come to terms with it all.
It is natural that people will not know how to be around you to start off with, none of us gets a manual, they will be led by you.
Glad you have a notebook and perhaps write your fears, questions and practicalities down to ask in 2 weeks too.
Personally I keep details of my relevant blood test results.
I also keep a note of future appointment dates and expected dates.
But the important thing is for you to be very kind to yourself and keep posting
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I had my first face to face appointment today since being diagnosed with Essential thrombocythemia (ET)/Jak2 a few weeks ago. I had some Viral blood tests done before I start the Hydrocarbamide in early July. I had to sign some forms to say that I accept the treatment. I deferred taking it right now as I am going on holiday for a week in late June and didn’t want to start it then in case of side effects. I have decided that I will not go abroad again as I have been unwell on previous occasions. I have been given the phone number of a Macmillan Advanced Haematology CNS who I can contact at any time. I have also been given the numbers of the Haematology Secretaries as appointments have been mixed up and letters have gone missing. My appointments will be 2-3 weeks to start with and 3 monthly thereafter. I will have bloods on July 7th and an appointment on the 8th July. All my bloods will now be done at the Hospital and not the surgery.
I also have Monoclonal gammopathy of unknown significance (MGUS) and my Consultant has not had a patient with both disorders at the same time.
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Hi @Juliet3 that sounds a very comprehensive appointment, I like to know where I am, a slight feeling of control in an unknown situation.
Perhaps you have been given those telephone numbers for a reason which is a bit of peace of mind. Please do use them if you ever need to.
How are you feeling?
Have a wonderful holiday.
Be kind and really look after yourself and please do let us know how you are doing.
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