Thank you Erica for sending me a message. It is good to know of the support available.
Burnee
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Thank you, Heidi for your reassuring message which helped to reduce my anxiety.
Burnee
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Hello Burnee - glad you have joined us here on the forum and you can find support etc - like you I have ET, the type of MPN that causes over production of platelets - probably you found it a surprise to get this diagnosis and know that treatment would be starting. How have you got on with your Hydroxy this week ? I was diagnosed 16/17 years ago and had 13/14 years on Hydroxy (I have been on Peg interferon injections the last few years) - but I well remember when I started taking Hydroxy, the strange thought that this was chemotherapy in a capsule and felt very apprehensive as to how it would make me feel etc etc - so I appreciate this week may have been a strange one for you with mixed feelings. The good news is that Hydroxy is a really effective treatment on the platelet levels and usually has some effects reasonably quickly so although daunting you are on a good treatment and it will keep you safe and well looked after. Itās handy to know Hydroxy can be quite dehydrating so it is really good and beneficial to up your fluid intake thro the day, including some water - handy to have a water bottle with you and keep taking small bits all the time - it really makes a difference. I know when I first took Hydroxy it made me immensely tired - in fact I could have slept through a hurricane I think which was very unlike me after a lifetime of being abit of an insomniac ! - but the body adjusts in due course and the initial effects wear off as time goes along. As mentioned you will get checked regularly and initially quite often to see how the meds are working and to find the dose that is effective for you - itās very individual for some three capsules a week keeps things controlled for another it is three or four each day - thereās no standard or right and wrong and it doesnāt mean a higher dose is a worse version of the disease - in fact itās very usual for many to constantly get their dose put up and down, ātweakedā, time and again thatās very common (I did all 13 years get it changed constantly 
) - itās handy to know thatās normal. Keep us posted how you get on and anything you need to know. Thinking of you
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Dear Jilly, thank you very much for taking the trouble to contact me. I really appreciated your advice. I am on my 3rd day of taking the Hydroxy and the only problem has been waking up in the night with an excessively parched throat even though I drank plenty of water throughout the day.May I ask why your treatment was changed?
Burnee
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Yes that does tend to be a Hydroxy thing re dry mouth at night - it should all balance out in due course just keep up the hydration esp water as much as poss. I had to change treatment as unfortunately Hydroxy stopped working for me after all those years and my platelets were going up and up again - which for most isnāt the case even after a long time - so I went over to Pegasus interferon injections - of the two I preferred my years on Hydroxy
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Thank you, Jilly for another message. It was good to learn that there was an alternative treatment for you when Hydroxy stopped working. I hope you do not have any side effects.
All the best, Burnee
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Hello ! Iām Kristina, busy mum to 2 gorgeous boys, living with ET treated with Inteferon/Peg Inteferon successfully for many years, diagnosed about a year ago with Myelofibrosis grade 3. Huge blow. Still coming to terms with and understanding how that might play out. On watch and wait but having indepth conversations about Stem Cell transplant. Seems a huge risk. Keen to find others with MF and chat to those who have chosen stem cell therapy. Happy to share my experience of ET and Inteferon also. Thanks in advance to anyone willing to share.
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Hi @Cake50 I am so glad that you have joined us and I hope someone will be able to share their experiences. I think it is the support of our forum, no matter what condition we might have, is so valuable.
I bet you are a busy mum with 2 gorgeous boys, how old are they?
Do you have any support?
I think it does take time to come to terms with different stages of our conditions.
I have heard it said that the emotional aspects of our diagnosis are just as hard as the medical side in some ways.
Personally my emotions have been on high alert since my diagnosis 19 yrs ago.
I also think that any procedure that is new to us is very scary.
The Blood Cancer UK support line is there for you if you would like to talk to someone on 0808 2080 888.
Please try and look after yourself as well as you do your gorgeous boys.
Also please keep posting, I would like to know more about you and I love your name, cake sounds good to me!!
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Hi Kristina,
Thank you for taking the time to share this. It must be a lot for you to process right now, and understandably so. Iām sure others on here can and will share their experiences, including those with other diagnoses who may have had transplants themselves. I wondered, in the meanwhile, if youād find our booklet about stem cell transplants useful at all? You might have heard of them already, but MPN Voice have various offerings including a buddy support system that I thought Iād mention, too.
As Erica has said our Support Team are here for you, and weād be happy to support you and talk things through with you (Blood cancer information and support by phone and email | Blood Cancer UK).
Take good care of yourself.
Best wishes,
Tanya.
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Hi, I have recently been referred for JAK2 V617/CALR/MPL and BCR-ABL1 testing. I am really nervous about my results as have no idea as to what it might be. I had to wait 4-6 weeks for results and itās been just over 4. I called the hospital today to be told the results are back and the dr will need to talk to me, but he is away until the end of the month. The receptionist was very nice and booked me in for an appointment on the 1st August.
Has anyone else had this test? and if so please can you tell me what you were diagnosed with. Iāve had no information given to me other than receiving the blood test form which stated malignancy in the wording so I am now worrying myself as to what it could be. Would the dr still want to see me if results were clear? I have read up about Essential thrombocythemia (ET) and Polycythaemia vera (PV), so am trying to prepare myself but Iām just speculating I feel. I donāt feel unwell other than tired most of the time. Any advice greatly appreciated. I admire everyone of you who share your journeys, as this definitely helps people like me.
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Hi all,
My name is Max Gerrard and my mum passed away from non-Hodgkins lymphoma 5 years ago and I decided recently to run the Chester Marathon on October 8th 2023 in her memory and for Blood Cancer UK. Please find my GoFundMe link below. Any donations no matter how big or small are more than welcomed. Thanks so much!
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A great big welcome @Nickijc I am so glad that you have posted.
I cannot help you medically that will be up to your Dr.
You ask if your Dr would still want to see you if the result was clear, I donāt know, but I would hope so so you know the way forward.
But what I really related to was your having to live with the not knowing for at least 4 weeks.
If you would like to talk to someone the Blood Cancer support line is there for you on 0808 2080 888.
The advice I would give you is to really look after yourself and do nice things to divert you.
Please let us know how you get on.
I think it must be horrible for you and I would be very anxious.
@Max a warm welcome and I am so sorry that your mum passed away 5 yrs ago from lymphoma and I cannot thank you enough for running the Chester marathon in October in her memory and fundraising for Blood Cancer UK.
Good luck and please let us know how you get on
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Thanks so much Erica!
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Thank you for coming back to me Erica. Iām trying so hard to put it at the back of my mind but as you can imagine itās very difficult. Iāve just started a new job and itās in leadership so very stressful but also a welcoming distraction. My mind tells me one minute that it canāt be anything as otherwise I would be seen sooner, but then I switch to there must be something for the dr to want to speak to me. I just keep thinking why would I have been referred for these tests if they didnāt suspect anything. The tests are so expensive I heard and very in depth. I just wondered if anyone on here had been through a similar experience waiting for their results. I just feel like I just want all the answers but I know thatās not possible. Iām very frustrated but Iām sure Iāll deal with things should I need to. Itās so good to find a forum where I can ask for advice and hopefully whatever my results I can still live my life.
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Oh @Nickijc I know only too well that see sawing of thoughts and emotions, it is so natural. Perhaps it is trying to make sense of it all and of course we veer towards the worse scenarios.
Tests are diagnostic to help rule things in as well as out.
You are worth every penny of the NHS money, that is what they are there for.
Most of us here have gone through the waiting for results and it is the worst time.
I certainly want all the answers and now please.
As you say your have just started a new high powered, stressful job, try to, and it is not easy, concentrate on your new role and try and get lots of rest.
Congratulations on the job, look after yourself and please keep posting
Thank you @Erica . Iāll keep posting and itās good to know there is support out there.
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Hi. My name is Alison. I live in South Essex. My dad was diagnosed with myelodisplasia about 10 years ago. He has no active treatment for it and has regular blood tests which always come back as abnormal but normal for him. He also has a dodgy heart valve that he wonāt have surgery to correct.
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A great big welcome @Ali24 to our forum and thanks for telling us about your dad.
I have another blood cancer and have had no active treatment for 19 yrs, yes, one of the āabnormalā but normal for meā and long may that continue.
I picked up on your dad saying he wonāt have the surgery to have his heart valve corrected.
I think it is so difficult for the loved ones being unable to perhaps get a patient to take the course of action we would like them to.
I would like to hear more about you and how you are doing?
The Blood Cancer UK support line is always there if you would like to talk to someone on 0808 2080 888.
Care for yourself as well as you care for your dad and please keep posting
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Hello and may I say what a great idea to have a forum for advice and topics of conversation which help massively in supporting people like me who live alone. My name is Garry and I am 68 years old and live in the Bristol area on my own. I have recently been diagnosed with Acute leukemia and other matters I canāt spell. I have undergone the induction Chemotherapy and the ongoing second protocol but unfortunately, some 15 days after my last bag of chemo my bloods have crashed to less than 0.05 on all fronts so I am confined to home. Mentally trying to cope alone is a huge problem as my āteamā are a good hour and a half drive away and sometimes phone calls just donāt do it. I would like to ask please, having been offered a STC and because I have no family there is no exact match for a donor and so I face the problems of side effects more than most. I would like to hear from anyone who has had an STC at a late age without siblings and their views or advice. Thank you in anticipation.
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