Hi everyone,
As you may know the nurses within the support service team have started back our ‘Ask The Nurse’ sessions each month within the forum.
We would love to hear what you would find useful to discuss? Perhaps you have an area of your condition you struggle with but don’t often hear spoken of?
Or do you feel an area of support is missing from our channels/information?
Anything you can suggest will really help us shape the work we do but also allow for a open space of shared experiences & discussion regardless of your blood cancer type or treatment pathway. Please drop any suggestions you have for a thread
Hi Lauran, I’ve just joined the site. I’ve known I’ve had Essential thrombocythemia (ET) since 2017 and started on aspirin (my count was around 800). Then when I turned 60 last year they started me on Hydrocarbamide. Been on them since last November. I’ve suddenly started getting tight shoulders and neck along with what I can only describe as sudden shudders! and often when I’m standing I get a slight swaying effect as if I’m about to fall. Is this a side effect of more likely some form anxiety? Just had my 3 month check… numbers down to 500, I mentioned (over the phone) that I had these symptoms but they didn’t think it had anything to do with the tablets. Any thoughts? thanks, Rob
Hi @Rob1963 I am so glad that you have found us and this particular thread to post in.
I will copy your post to @LauranBloodCancerUK for you.
This is a very personal reply, and not a medical one, but if your special nurse/consultant says that they do not think that your symptoms are anything to do with the tablets you are taking then perhaps it is back to your GP with that information and ask them what it might be and if you think that it might be anxiety perhaps suggest it.
I mention this because I have found that my consultant might say that it is not down to their treatment ,but do not suggest what I should do next.
Wait to see what @LauranBloodCancerUK says first and then please do let us know how you get on.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Be kind to yourself
Hi @Rob1963,
I’m so pleased you have joined our forum. It is great news your medication is being effective in reducing your platelets, but I’m sorry to hear that you are struggling with some symptoms.
As Erica has also suggested, it would be a good idea to run this past your GP as it is certainly not an obvious or common sounding symptom but perhaps an overall review and check is needed to rule out any other cause.
Dizziness can be part of having Essential thrombocythemia (ET) but if this is new for you and something that persists, then please do keep a record of how you have been feeling and flag this again with your Gp who may run blood pressure checks etc.
In case it is useful i have linked here to some information around hydroxycarbamide- Hydroxycarbamide – MPN Voice.
Should you continue to have worries around this or would prefer to talk things through with us at any point, do know that our helpline is very much here for you - 0808 2080 888.
