Hot weather and MDS

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I’m feeling the extreme external heat. Does the combination of Myelodysplastic syndrome ('MDS') and the high outside temperature cause a general feeling of being unwell?

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Hi @Pcm.
I’ve copied on the @BloodCancerUK_Nurses_Group who may be able to help. I would definitely contact your gp or medical team if you’re feeling unwell and get their advice to.
It is extremely hot for the next few days isn’t it and so uncomfortable. I wish I could sit in front of my fan at home as schools are just unbearable in this heat. I’m not sure how children are expected to say focussed!
I hope others can share their experiences. Keep us updated on how you are feeling :blush:

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Hi @Pcm welcome to our forum, a good question that might not just apply to Myelodysplastic syndrome (MDS)
@Nichola75 as given you great advice.
I would suggest that you remember your high factor sun cream, wear a hat, cover up, pace yourself and keep well hydrated. some people prefer the hotter weather, some the colder weather.
Please do let us know what your medical team say, we can all learn from it.
Be kind to yourself and I look forward to hearing more from you

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Hello @Pcm

Welcome to the Forum - thank you for posting your great question.
In all honesty I am not sure if Myelodysplastic syndrome (MDS) does make you feel hotter, maybe someone else with Myelodysplastic syndrome (MDS) can answer this, if they have ever asked their Consultant.
However, I do know that many medications can cause some people to feel hotter and have less tolerance to heat. I found this out last year as Leukaemia Care posted something on their social media, so I looked into it. Sadly I can’t find that exact post to share with you, but I did find this page: is my medication making me hotter?
There are many drugs and other disorders/diseases, that cause people to feel hotter, so if you are on any other medication, that could be the reason. If you are and your medication is listed, speak to whoever prescribes it, let them know how you are feeling. They may be able to offer an alternative or want to monitor you more closely through this hot spell.
As @Nichola75 has suggested, please do speak to your GP or Haematology team if you feel unwell. Make sure to be drinking plenty of clear fluids, and try to keep cool as best you can.
Take care. Heidi.

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@Erica
So true, I am not a summer lover, I adore the winter and the snow! I can’t ever wait for autumn, knowing the winter is just around the corner. I’d be much better suited to living in the Arctic! I’m a summer grinch, sitting indoors sulking today with all the curtains closed and my feet in a bowl of cold water! :wink:

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Oh @Heidi_BloodCancerUK I have this mental picture of you.
In the cold weather you can always put extra layers on, I do feel the cold more now, and I often look like the Michelin Man.
However if I take any more clothes off in this hot weather I am likely to get arrested, also I need to cover up because of the sun.

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Hi Pcm,

I also have Myelodysplastic syndrome ('MDS') + Excess blasts. I am 70 and have to inject myself twice a week with 2 different injections aranesp and Filgrastim? But this hot weather has made me feel about 100, I am shuffling about like an old man, climbing the stairs or sorting the recycle really tires me out, so I don’t know if it is a combination of the Myelodysplastic syndrome ('MDS') plus the exceptional summer weather or what. But I feel really fragile at the moment. Let’s hope it gets cooler soon and we are back to our normal selves, whatever normal is.

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Hi @PeteLong

I’m sorry to hear that the heat is making you feel like that. Like you said - it could be a combination of things. Could it be a side effect of the medication? Might be with mentioning it to your team.

Just take it easy and make sure you look after yourself. Hopefully the heatwave will die down a little soon.

Please keep us updated on how you are doing.

How is everybody she’s doing in this heat?

Nichola

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Hi Nichola,

Yep, it’s cooler today down here in Devon, so hopefully will get some of my energy back soon. But I will mention it to my team at RD&E. Thanks.

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Good morning @PeteLong,

I hope it’s remained a bit cooler for you, and that you’re feeling better?

I can see our lovely forum support volunteer Nichola has responded, and I am just popping in to share two recent and relevant threads that have some general advice that may be helpful:

I’m in Bath, so also the South West - but sadly without any ocean access! It has been quite uncomfortable here, too.

Take care,

Ceri - Blood Cancer UK Support Services

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Thanks for that Ceri, I read the keeping safe link and am doing everything on it. What a good boy am I? :slight_smile: Kind regards.

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Well I had my first blood transfusion a week ago as my haemoglobin had fallen too low. I feel a lot better now, can even climb the stairs without puffing and panting! Thanks blood doners, you do a sterling job. Looking forward to the eclipse tonight, that should cool the air for a while :slight_smile:

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It’s good to hear that you are feeling a little better and hope you enjoyed watching the e eclipse :blush:

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