My mum was recently diagnosed and it’s thrown us all through a loop. She ended up in hospital in January, and they saw her white blood cell, red and platelets were low, after a bone marrow test they confirmed Myelodysplastic syndrome (MDS). Recently just been told it’s Multilineage, but we’re awaiting the cytogenetic results.
She had blood and platelet transfusions when she was in hospital, and is now back home and on a range of medication (no chemo, but antibiotics, antivirals, antifungals, and 1x weekly eprex injection). The doctor did say she thinks she’s low risk but we need the other results, reading online it says the median survival is still only 5 years, and this terrifies me. She’s only 55 and otherwise healthy. I think I’m just looking for some kind of reassurance that she will be here longer than that, and that if she was at risk even without the cytogenetic they would have mention chemo already? Looking for a glimmer of light at the end of the tunnel as I’m finding it hard to process this information and don’t want to misinform her. She has an appointment this coming week but I’m unable to attend with her.
Hi Pickle firstly sending you and your mam a big hug. It’s a very scary time for you all. Please stay off google and doing your own research on the internet. Myelodysplastic syndrome (MDS) is a very diverse disease with many different types. There are people living with low risk for many years needing little or no treatment and then there is the intermediate and high risk side. I was diagnosed with Myelodysplastic syndrome (MDS) at 42. I had many different treatments over the years which allowed me to live a relatively “normal” life until the disease progressed for me 2 years ago when I had a Bone Marrow Transplant. I am currently 18 months post transplant and in remission. It’s a difficult road but it can be a cure. IF things progressed for your mam this could be an option for her too. Her team will talk you thru where they see her disease developing once they have a full picture. You are in limbo at the moment until then. It will feel more manageable once you know what exactly you are looking at. Make a list of qs to ask the team at the next appt and make sure someone goes with your mam who can take notes. Thinking of you all.
Thank you @Ashob. I’m sorry to hear of your own struggles with Myelodysplastic syndrome (MDS), but happy for you that you are now in remission - that’s fabulous news! The hematologist did say she would be happy to put my mum forward for a Bone marrow transplant if it came to that as other than her Myelodysplastic syndrome (MDS) she is fit and healthy. I think it’s just the unknown, like you said. It’s just a terrible limbo. I will make sure to ask more questions at her next appointment and will try to have a more positive outlook until then!
Good for you. It’s a very difficult time and it’s a shock to deal with. It’s easy to say be positive but you have to get there in your head and that takes time. In saying that it is the only way to approach it in my opinion. I always had a plan in my head at least!
This forum is great and there is a closed fb page called Myelodysplastic syndrome (MDS) UK where you could join too if you wished. They were a great support to me as it is such a rare disease. If I can help please feel free to message too.
Hi @Pickle a great big welcome, I am so glad you have found us and @Ashob has given you a good response and I am sure that it has thrown you all through a loop,
My first half century was very healthy, my diagnosis, with another blood cancer, put me on an emotional rollercoaster of emotions and thoughts.
I was in shock for a very long time.
I was 53 yrs old when I was diagnosed and saw on the internet that I had a life expectancy of 5-10 yrs, that was 20 yrs ago.
Yes, it is very important not to misinform your mum
If your mum has an appointment soon, perhaps suggest she writes all her fears, thoughts, feelings, questions and practicalities so she can cover them all at her appointment and get the responses she needs.
If your mum or you would like to speak to someone at the Blood Cancer support line it is there for you on 0808 2080 888.
The Blood Cancer UK information on Myelodysplastic syndrome (MDS) link is attached.
Myelodysplastic syndromes (MDS) - what is it, symptoms, treatment and prognosis | Blood Cancer UK
Personally I have found that all the family might deal with the shock and diagnosis in a different time and way, there is no right or wrong way, perhaps just be kind to and look after yourselves
Please do let us know how you and your mum are doing
I hope you are doing okay today? Looking for that glimmer of light is completely understandable under the circumstances. We know that when reading median survival rates online, this typically will only add to your stress and upset. We appreciate having a prognosis is really important when a loved one has just been diagnosed & know it can be an important part of trying to make sense of it all. However there is no website that is able to indicate a persons outlook. Prognosis is really individual and therefore your mums medical team are best placed to answer any questions you & your family have on this.
In case it is helpful in any way I have linked here to our information around Myelodysplastic syndrome (MDS) prognosis as it looks at questions to ask your medical team but also highlights the factors which will contribute to understanding this more- Myelodysplastic syndromes (MDS) prognosis | Blood Cancer UK.
Alongside our webpage information and the brilliant support from others going through similar here on the forum, also know that if you would like to talk things through with us, we are only ever a phone call away for you & your family- Blood cancer information and support by phone and email | Blood Cancer UK.
Take good care, Lauran
@Erica @LauranBloodCancerUK thank you both so much for your responses. I think for me personally, knowing more = more control and I want to be on top of this as much as possible, so I know that’s why I’ve been endlessly searching for answers even if it’s to my own detriment. My mum seems okay, I’ve been spending more time with her and making sure I’m taking her to get her shopping etc so she can be as isolated as possible (she’s fed up of sitting in the house) and on her medication she says she feels the best she’s felt in years. It seems the hematologist thinks this has been going on for 3 years, and that the GP has brushed my mum off (most recently said she had long covid when she was struggling to get out of bed and getting out of breath after a few steps) despite having sent her for a colonoscopy in 2021 to check for a bleed in a bowel as she had been flagged as anaemic, but when that came back clear they didn’t bother to investigate any further. She also had blood clots coming out of her mouth for the last year and sporadic nose bleeds which they said was ‘nothing to worry about’. So I think there’s a lot of ‘what if’ if the GP had of listened and we could have caught this much earlier.