Hi, My grandma has just been diagnosed with Myelodysplastic syndrome (MDS) and we have had a consultation with the doctors today at the hospital.
My grandma is 76 years old at the moment and she is very weak. She doesn’t have any appetite and is losing weight daily.
The doctor have said she is at a High Risk and chemo will the treatment to control the Myelodysplastic syndrome (MDS). With my grandma being so weak I’m not sure if she will be able to go through chemo ? What are the side effects from it.
In regards to prognosis with the Myelodysplastic syndrome (MDS) being at high risk we did not get told anything. Would anyone have any advice to give us please.
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Hello there @Ng14, welcome to the forum. Your care for your grandma comes across so clearly and I’m really so sorry to read of her diagnosis with Myelodysplastic syndrome (MDS).
It sounds like a worrying time for you and your grandma and it’s lovely that you’re trying to find out more to support her.
While there are people on the forum living with Myelodysplastic syndrome (MDS) who likely know what your grandma is experiencing, we all have treatments specific to us and our symptoms and diagnoses so we’ll all have different prognoses. We’re not doctors so can’t offer direct advice about treatments. Maybe help your grandma note her concerns and questions so a specialist who knows her background more specifically can be asked?
There are also many different types of chemotherapy and they’re prescribed depending on our risk level, type of blood cancer, how effective they are… So I’d say from my non-medical opinion that although chemotherapy sounds terrifying, it is not always as scary as it looks in media. I take a type of chemotherapy daily in capsule form to treat the Polycythaemia vera (PV) I was diagnosed with, for what it’s worth. Many of these medicines have been in use for years, even decades, so are well understood clinically.
From my non-medical point of view, I was told by my haematologist that I’m classed as being at “high risk” due to having previously experienced a clotting event (a heart attack), despite being classed as “young”. Folks over 60 tend to be classed as being at higher risk due to age, from what my doctor told me.
Perhaps you’d like to read the Blood Cancer UK information about Myelodysplastic syndrome (MDS): What is MDS? | Blood Cancer UK
If it helps, the lovely Blood Cancer UK specialist nurses can be called for advice and support on 0808 2080 888. Maybe your grandma might like to chat to a nurse?
Thinking of your grandma and you @Ng14. Please let us know how you both get on.
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Hi @Ng14 I am so glad that you have found us and you obviously really care so much about your Grandma.
Perhaps the questions you ask can only be answered by your Grandmas medical team who know your Grandmas whole medical history and proposed treatment options.
Maybe communication between you and your Grandma is key.
Can you both write down questions to ask?
Will she let you ask questions at appointments?
I often think that relatives and carers have such a difficult, often powerless, role.
They are the unsung heroes.
Please do let us know how you both get on and be ever so king to yourselves
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Dear @Ng14,
Thank you for reaching out to us on the forum. We are sorry to hear about your grandma’s diagnosis. I hope that by now as a family you may have been given some more information by the team and have a clearer understanding of what is happening.
I can see that @Duncan has kindly posted some information about Myelodysplastic syndrome (MDS) for you to read. Your grandma’s team are the best people to ask about treatment side effects and prognosis because many factors are taken into consideration including overall health, your grandma’s wishes and the treatment options available.
Chemotherapy treatment for Myelodysplastic syndrome (MDS) are broken up into two categories. Intensive treatment which is not suitable for everyone due to the side effects and non intensive treatment which aims to control the Myelodysplastic syndrome (MDS) as much as possible, without hopefully causing too many side effects. MDS treatment
I have also enclosed some information about prognosis including questions to ask the team which may help. MDS and prognosis. Questions to ask Its often a good idea to write them down in advance.
I know you will get lots of support here from the forum but if you would like to discuss this further or need more support from our nursing team, please do not hesitant to call us on our free phone line 0808 2080 888.
Please keep in touch and let us know how you and your grandma is getting on.
Best wishes
Fiona (support services nurse)
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Hi thank you very much for your support and information.
At the moment we have been to our first consultancy where we were given the news and the treatment options.
Due to her age and her being at a high risk it was chemotherapy that was suggested. I assume it will a non intensive chemo but do need to confirm.
We were given the time to discuss and let the hospital know what we wanted to do. We tried calling today but the doctor was not available so they have said we will get a call back.
We were not given any prognosis or anything but I am worried we don’t have much time.
Do you know if the patients are at high risk they are likely to be given treatment sooner rather than later ?
We hopefully get a call back and get to treatment.
My grandma is very weak and has stomach issues also so I’m not sure how the chemo will act to that.
I hope everything goes well and we get to treatment as soon as possible.
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Hi @Ng14 it sounds as if you have lots of questions for the doctor when they ring.
I like to actually have everything I want to say clearly written down so I feel organised.
Perhaps ensure the doctors know how weak your grandma is and her stomach issues.
Please do let us know how you get on and both of you really look after yourselves
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Hi @Ng14,
You are very welcome. We all want to support you as much as possible.
I am sure the hospital will get back to you shortly but if not, I would suggest contacting the clinical nurse specialist (CNS) and expressing your concerns. Hopefully, you were given their contact details. They are normally your main point of contact and will be a key person involved in your grandmas care.
Starting treatment will depend on a few factors and varies from hospital to hospital so again its best to check with the treating team. Some treatments need to be given as an inpatient whilst others can be given as an outpatient, normally in a chemotherapy day unit. The team will explain where your grandma’s treatment will take place and let you know when they plan to start. This can range from a few days to a couple of weeks. Your grandma may need other tests before treatment can start to assess her overall health, but again the team will explain this to you. She will need to sign a consent form agreeing to the treatment and this is a good opportunity to ask questions about the treatments side effects.
The haematology team will take all the factors into consideration when deciding treatment including how weak your grandma is and also her stomach issues but it is a good idea as @Erica previously mentioned to highlight this again to the team.
I hope you get to speak with someone soon.
Take care
Fiona (support services nurse)
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Thanks all, to update we have been given a non intensive chemo therapy option.
Which we are starting this week, her reports have come back to be very high risk.
Any have any experience with a very high chemo patient with non intensive chemo. What should I be looking for to keep grandma content, is there any things I should do at home to make sure she’s safe with infections.
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You are so thoughtful @Ng14 I would suggest that you be led by what Grandma would like.
As for your concern about infections and germs indoors, I think just the precautions we took during Covid and if you feel unwell take a Covid test. Perhaps masks when outside etc.
Spoil yourselves and please do keep posting
The Blood Cancer UK support line is there for you on 0808 2080 888
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Hello again @Ng14, that’s great that you got some clarity about what your grandma is living with and what treatment to expect. Still feels so rubbish though, I bet!
Just wanted to reassure you that your support of your grandma is lovely and I imagine it’s really helping her, even if she’s feeling all over the place and might not be responding to how you’re helping her. When my loved ones offer me support with my own blood cancer it’s always a treat, even if I can’t show it there and then.
Your grandma may be classed as being at high risk but that doesn’t necessarily mean she can’t carry on as she did before. I’m also classed as being at high risk and have a greater chance of infections affecting me due to a weaker immune system from taking daily chemotherapy, despite being considered “young”! If your grandma was active and social before diagnosis then she needn’t stop that. Perhaps following her energy and fatigue levels can help guide her activities now.
In terms of infection risks, I’m sure you remember being more careful during the pandemic and keeping hands clean and generally steering clear of others with viruses and so on. This is how I live now with Polycythaemia vera (PV), being mindful of washing hands, keeping any cuts clean, wearing a mask around crowds and ill people, and taking any health concern to my doctor straight away in case it could worsen due to being immunocompromised. I’ve made sure to be up to date with flu, RSV, and COVID-19 vaccinations which make defending against viruses easier on my body.
Is your grandma aware of these new infection risks? Maybe check with her how she’d manage any bumps and scrapes and reassure her that it’s okay for her to take up her doctor’s time over any concerns, no matter how big or small they may seem to her.
At this early stage after diagnosis it’s good to check anything with her specialist. Have your grandma’s doctors given any andvice about her lack of appetite and weakness? Be sure to pass these by them.
Personally speaking, having passed any new or potentially worrying old symptoms by my doctors helps me feel confident to know when to escalate any going forward.
Do please keep us posted about how you and your grandma get on @Ng14. Don’t forget you and your grandma can call the specialist nurses at Blood Cancer UK on 0808 2080 888.