Hi all, I’m aImost 66 and have just been diagnosed with Myelodysplastic syndrome (MDS) with MPN overlap and possible Myelofibrosis. I’m interested in conversing with anyone who doesn’t mind sharing their experience from diagnosis to now. Thank you so much for your time, Best wishes, Sally
Hi @sallyspix a great big welcome and I am glad that you have found us.
We all have different diagnosis but we often share similar fears, thoughts, feelings and practicalities.
I hope others can help you more.
Please keep posting and I look forward to hearing more about you.
Thank you for your kind words Erica. They are much appreciated! x
My dad (70) has also just been diagnosed with Myelodysplastic syndrome (MDS)/MPN Overlap Syndrome. We do not know the specifics yet.
So far he has had blood tests and a bone marrow aspiration. His blood was then sent off to have his DNA analysed and he received those results on the 30th December. This was when he was told it was Myelodysplastic syndrome (MDS)/MPN Overlap Syndrome but the consultant did not mention it was a blood cancer. He found that out at home when a booklet for Myelodysplastic syndrome (MDS) and another one for MPN arrived in the post. That was a huge shock for him and we are now obviously worried about what happens next.
He has a spinal scan next Saturday and then will see his consultant in 4 weeks after that.
His symptoms have been severe itching and tiredness. He has also lost a lot of weight.
Can I ask what your symptoms have been and what treatment you have received or been offered so far?
I know this the Myelodysplastic syndrome (MDS)/MPN Overlap is quite rare so it would be really good to share experiences with you.
I was diagnosed with Myelodysplastic syndrome (MDS)/MPN overlap in late 2020 at the age of 77. My MPN is ET and affects my platelets. I am on hydroxycarbamide for the MPN and I have weekly injections of Arenesp to help my anaemia . I felt very isolated as since, I joined this forum, I haven’t met anyone with the same diagnosis until today when I found two !! I am very happy to answer any questions you might have. I have just replied to SueM, which you may find useful.
Best wishes Kate S.
Hi Sue and thanks for your response! I’m so sorry to hear about your poor dad’s experience. I’m originally from the UK but now live in New Zealand and it’s at times like this that I realise how behind this country is regarding treatment options compared to the UK and USA. It’s a beautiful place to live, but not if you have serious health issues. My story is:
I’ve suffered with kidney stones for the past few years and at the beginning of September 2022 I was sent by my GP for a routine blood test as I wanted to get them removed. The tests showed that things weren’t right with some of my bloodwork and I was sent for more comprehensive tests. I then saw a haematologist at my local hospital and she performed a biopsy on the marrow and bone. This had to be sent to Australia as there were no facilities in NZ that could do the genetic testing required! The results came back 3 MONTHS later! During those months I had no idea what was happening to me and I researched all I could on the internet, particularly on the Mayo Clinic’s website. (My haematologist referred me to this site.) I attended an appointment with my haematologist on the 11th Jan to discuss the results but I’m afraid to say that I left there feeling very confused. The upshot of the appointment was that I was told there was no treatment available until such time as my Myelodysplastic syndrome (MDS) symptoms got really bad or turned into Acute Myeloid Leukemia. A far from comforting prognosis! Symptom wise I only really have 2, fatigue and aching limbs/bones. The fatigue is the worst Can I ask which MNP your dad has? Mine is Myelofibrosis and I see that Kate’s (who has recently messaged you)is Essential Thrombocytopenia. Are you in the UK?
Sorry for the rambling message, especially as I have little to offer as regards my experience!
Take care Sue,
Look forward to hearing from you. Sally xxx
Hi Kate and thank you so much for your kind message. I do indeed have some questions if you dont mind. So here goes!
How do you feel on a day to day basis?
Has your illness greatly affected your life in general?
Do you have family support?
Are you in the UK?
Have you been happy with how your specialist has explained and treated your condition?
My condition was discovered due to an unrelated blood test. Was this the same for you or were you having symptoms that you were concerned about. Hopefully you’re able to see my message to Sue with my particular situation explained. My MPN is Myelofibrosis.
Looking forward to hearing from you Kate! Best wishes, Sally xxx
Thanks for making contact.
I am sorry to hear that you also this type of blood cancer. I am also sorry to hear that your experience in NZ has not been great.
My dad also had to wait 3 months for the genetic testing to come back and they only had to go to Birmingham, not another country! So hopefully that makes you feel a little better. (we are in the UK, Cumbria)
We do not yet know which type of Myelodysplastic syndrome (MDS) or MPN he has yet, so I am hoping we get that information when he sees the consultant in 4 weeks time. I am sure they probably already know from the tests they have already completed.
Please do not apologise about the rambling message, I think I have left a few of those since I joined the forum a few days ago. It is hard to put everything into words.
I too am so happy to now have contact with you both, and I hope @KateS feels a little less isolated now. I am sure we will be able to help each other through this. It is good to know that I can let my dad know he is not alone too. He is not very good on computers and his internet is very slow which I why I am asking these questions and making these contacts on his behalf. I also want to protect him a little before his appointment. There is no need for him to worry until we know all the facts.
Thanks again. x
I will try and answer your questions honestly. I have a very bad knee - should have had a replacement years ago. The damage done to my heart when I had pneumonia plus the knee pain are the things which affect me most. Anaemia caused by the Myelodysplastic syndrome (MDS) puts my heart under more strain, so at the moment, I have to take things quietly, but as I am 79 years old , it’s not too difficult. I live on my own, having lost my husband to prostate cancer 13 years ago. I now have a lovely lady who comes in once a week and cleans the hose and does my shopping. I don’t drive very far these days. My son brings his grandchildren to see me every week and my daughters who both live 200 miles away visit me usually every month and I stay with them once or twice a year. I , too live in the north of England in Cumbria and I am very happy with the treatment that I have received throughout my illness. My haematologist answers any questions . It feels to me that the side effects, like being liable to infection and the consequences eg my heart failure are the worst part so far. I had symptoms for at least two year before being diagnosed by a locum GP. My MPN is ET and affects my platelets. They were over 1000, but now are much nearer normal thanks to the hydroxycarbamide. So far the anaemia has been kept under control with the Aranesp injections which I give myself every week. My blood count went down last month as I missed an injection when I had covid. I am having a blood test on Wednesday to see how I am doing… Both my daughters are here for another day and it is so good to see them both. I am really thankful for the treatment and kindness that I have received for everyone I have seen. I hope that things improve for you. Don’t get down hearted and be kind to yourself. Keep messaging and we can all support each other. Kate xx
Hi Kate! How are you?
Thank you so much for your e mail and what a coincidence that Sue also lives in Cumbria!
My haematologist says I am an anomaly because my symptoms are not textbook. I’m not anaemic, my platelets are low and go up and down with each blood test but never above the normal range and my white blood cells are all over the place! I’ve never conformed to ‘the norm’ so no surprises there!
Only yesterday, my friend’s brother(in his 50’s)who lives in Australia was diagnosed with
Polycythemia Vera. This was after a routine health check up so it was quite a shock to him.
Anyhoo, keep warm over there! This condition is also giving me internal heating overload so coupled with 26-27 degree daily temperatures I’m attached to the air conditioning unit as much as possible!
Take care Kate,
Very best wishes,
Hi Sue! How’s your dad doing? xxx
So good to hear from you. I have had a bit of a problem this week. I had a blood test last Wednesday and the results came back when my GP wasn’t there. I always have a high potassium result which my haematologist says is caused by taking of blood and the time it takes to get tested. However as this is a rare condition, not a lot of GPs are aware of it and alarm bells ring when they see the result. I was rung by the out of hours GP who insisted that I needed to get to A&E quickly. I rang my son who lives 6 miles away and he came and took me to our nearest A&E which is 30 miles away. They were very good and I ended up having an infusion to bring my potassium down. My son took me home with him and a spent a happy weekend with him and his family. This is an ongoing problem and I am seeing my GP later today. there seem to be so many variations in this disease. Keep safe and keep in touch. Love Kate x
Many thanks for asking.
He had a spinal scan on Saturday. He was in the scanner for over 1 hour.
We are hoping that it will not be too long before we get the results and that they will give the consultant the info he needs to determine some possible treatment and be able to tell what condition he actually has.
He is not too bad in himself at the moment as he is sleeping better which makes a huge difference. He saw a dermatologist midweek who has doubled one of the tablets he was already taking for the itiching, so hopefully that is helping. We tend to find the changes in medication help for a few days and then he goes back to normal so we have everything crossed it is not the case this time.
I hope you are doing okay too x
Hi Sue, Just checking in to ask how your dad is. Nothing much has changed with me so I guess that’s a good thing! Best wishes, Sally x
Hi Kate! How are things with you? No change with me so that’s a positive I guess! Best wishes Sally xxx
Good to hear from you. I had my appointment with the haematologist today. Blood count up, but platelets still too high. Still having the Arensep300 injections and 4 hydroxy a week. so, all good. My next door neighbours very kindly took me to the hospital and we went out to lunch afterwards. I have been feeling better recently and am looking forward to spring and pottering about in the garden. Keep in touch and very best wishes xx
Hi @KateS what a lovely neighbour you have.
Great news that you are feeling better and a potter in the garden sound good to me.
Look after yourself
Thank you Erica,
Good neighbours are priceless and I give thanks for mine every day.
Just a quick message to ask how things are going. I’m in West Sussex at the moment with my daughter and her family and the weather has been very kind!
How many Easter eggs did you eat??!!! Much love, Sally x
So pleased to hear that you are with your family for Easter. I am in Warwickshire with my daughter and son in law. I saw the haematologist just before I came away. Blood count is up - really good. Platelets also up, so hydroxy back up to 5 weekly. Not too keen on chocolate, but having lots of hot cross buns.! Are you here for long before you go back to New Zealand?
Enjoy your stay. Love Kate x