Hi
After I was diagnosed I didn’t have any information on what I have just told I would be monitored every 3 months blood test, doctor suggest I look at Myeloproliferative neoplasms (MPN) voice online!
I am starting to struggle with breathlessness and fatigue, last year I anemia had to go A&E urgently as my blood really low in the end I had a iron infusion which helped. I have looked up my illness but it goes to American sites which are to in-depth to understand unless your a doctor.
Has anyone any tips to help with the symptoms above
Hi @Etap96 a great big welcome and you are in the right place.
The Blood Cancer UK link is What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
However there is also Myeloproliferative neoplasms (MPN) voice that also give great information and support MPN Voice – mpnvoice.org.uk
Being monitored is often called watch and wait, but perhaps do always let the people that monitor you know of any symptoms you might have, their severity, impact on your life and any treatments you might have had.
I hope others with Myeloproliferative neoplasms (MPN) might be able to help you further.
Look after yourself and please do keep posting.
Hi @Etap96,
I’m sorry to hear you’re struggling again with your symptoms. Erica has given some great resources . It also might be worth knowing that if you would like to talk to one of our team members our helpline is very much here for you- 0808 2080 888.
You mentioned that you have previously been anaemic. Can I ask if you have had your bloods checked lately?
It is also important to let your medical team know how you have been feeling so if you have a haematology team please do let them or your GP know.
I also have Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) overlap with Essential Thrombocytopenia. Apparently this is a pretty rare diagnosis.
My Myelodysplastic syndrome (MDS) was diagnosed in early 2021 and the Myeloproliferative neoplasms (MPN) popped up in March of this year.
I do have a lot of fatigue, but no breathlessness as of yet.
My hematologist says Myelodysplastic syndrome (MDS) causes low blood counts. Perhaps this is the reason for your anemia rather than the Myeloproliferative neoplasms (MPN) which tends to cause proliferation of either the red blood cells or platelets.
Are you taking any medication for the Myeloproliferative neoplasms (MPN)? I started Hydroxyurea 500 mg a day for my Myeloproliferative neoplasms (MPN). I do feel very fatigued from the drug. As of now I am not on any treatment for the Myelodysplastic syndrome (MDS) as all counts are in the acceptable low range.
My advice is to rest when you need to, if possible. I’m retired so I tend to rest a lot, but I know this is not always possible if you work, have children, etc.
Also drink a lot of water. I aim for 64 oz a day, but I don’t always make it!
I also take a B12 supplement every day. Not sure if it’s working, but can’t hurt!
Thank you for your tips, mine blood problems as I said just after Covid had a usual blood test and it came back with high platelet count, had to have a BMB my local hospital, it could be was Thrombosis then the next test she said it could be Dysplasia, Jak2 positive? Then I transferred to QE Birmingham Dr Hussain he knew more about subject the first test came back with diagnosis but didn’t really explain.Hope to get to doctors tomorrow see what he says.
I am fortunate that I am retired now I do have to sit with a cuppa now and then but I still take our greyhound for her walk. I apologise for my scatty story I have never been on a forum so not sure what I can say.
Please don’t ever feel the need to apologise on here @Etap96 for your story, scatty or not and I did not think it was anyway
Just tell us what you are comfortable with.
My tip would be to write down all the questions you would like to ask your doctor tonight so you cover everything tomorrow.
I think that often medical people don’t want to overload patients, probably in shock, with too much information initially.
The main thing is that you are kind to and look after yourself and let us know how you get on.
I too was diagnosed and given no info, and there isn’t a great deal on line, apart from some basics. I’m attending a forum in October and have a massive list of questions!
I think the Dr’s are so used to dealing with it, they forget we know nothing.
Hi Etap,
I was diagnosed with Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) overlap in Jan 2021. I was given the excellent books on both parts. They can be obtained from this site and explain everything… I think that I had had the disease for some time before it was picked up by a locum Dr from South Africa. Since diagnosis, I have had excellent treatment. I have a weekly injection (self administered) of Araesp - a growth hormone which helps to keep my blood count from falling and hydroxycarbamide , 500mg daily and 2 on Sunday… Most of the the time I am ok, but in the last three years, I have had pneumonia which affected my heart, covid, Graves disease - overactive thyroid and a fractured hip. I am still struggling with mobility. I am too old for a bone marrow transplant, so I just hope that the drugs keep working. As I read some posts, I realise how very lucky I have been with my consultant and the team. . , There are several specialist nurses who always respond to any questions. Send for the booklets and keep asking questions and please keep in touch as we all support each other. Kate
Sorry hear you have been poorly hope you have turned the corner now. It is a bit of a shock when the C word is mentioned, I have been struggling with the fatigue so I made an appointment with our practise nurse she checked my oxygen level okay she said in the end she took blood and blood pressure okay, but I had a day off from housework (I am retired) so switched the world off for a day just walked our dog, did an easy meal for us went to bed at 10pm and read a bit then fast asleep, so that’s 2nights good sleep I have had, I am pottering in garden today, doing okay so onwards and upwards. I wish you well.