Hi i have essential thrombathemia about 12 months being treater with asprin .Does anyone on here suffer with stomach trouble with it my platelets are 775 i have bruiseing on legs and suffer with fatiguefor the last 4 month sufferd with pains in stomach and diarrhea especially in a morning does anyone else get this thankou mark
3 Likes
Hi @Marky58
Welcome to the forum and thanks so much for posting. I hope you find this a supportive place to share anything that’s coming up for you with your Essential thrombocythemia (ET) diagnosis.
I’ve tagged your post to make it easier for others to find who have the same diagnosis. I also wanted to share our Blood Cancer UK information about Essential thrombocythemia (ET) in case you haven’t seen it yet, which is here: Essential thrombocythaemia | Blood Cancer UK
If you click through to ‘Symptoms of Essential thrombocythemia (ET)’, you’ll see that bruising and stomach pains is listed as a more common symptom. Have you mentioned this to your hospital team? It is worth letting them or your GP know if you haven’t already, especially if you’re finding it getting worse or affecting you on a daily basis.
There is also some useful information on the website about ‘Looking after yourself with Essential thrombocythemia (ET)’ where you’ll find some information about managing the fatigue. This is something that comes up a lot so please do feel free to take a look around the forum if you get a chance as many people have kindly shared things that help them with this also.
I hope this helps and that someone else will also reply with their experience.
Take good care of yourself,
Ali
3 Likes
Hi @Marky58 I am so glad that you have found us, welcome.
I certainly cannot better @Ali_BloodCancerUK response to you.
I just wanted to welcome you to our forum.
I really look forward to hearing more about you and take lots of care of yourself
3 Likes
Hi @Marky58 ,
Welcome to the forum!
We are sorry to hear about your diagnosis of Essential thrombocythemia (ET) and that you are having stomach issues.
I can see Ali has provided you with some great advice to read over and we would definitely recommend informing your team of the issues you are having in relation to your stomach and other new or persistent symptoms you may have, as this will help them to provide you with the best care and for them to be kept updated about how you are doing.
Just to add, could I ask if you are taking a PPI (proton pump inhibitor) such as Lansoprazole, Esomeprazole, Omeprazole or something similar? As these medications are usually prescribed along with NSAIDs (Nonsteroidal anti-inflammatory drugs) such as aspirin to help protect the stomach from ulcers and other gastric issues.
If you are unsure about this, or know that you aren’t taking anything else along with your aspirin we would recommend asking your team or GP about this as this medication could help reduce stomach aches.
Best wishes,
Emma (Support Services Nurse)
4 Likes
Hi emma i am taking landzoprezole with the asprin but get upset stomach every day its getting me down
3 Likes
Hello there @Marky58, welcome to the forum. I’m sorry to read of your diagnosis with Essential thrombocythemia (ET) and those symptoms. Like dear @Ali_BloodCancerUK says, have you let your specialists know about the bruising and stomach pain? I’d be tempted to tell mine and ask what could help lower those high platelets.
I was diagnosed with a closely related MPN called Polycythaemia vera (PV) in 2023 and take daily aspirin to help thin my blood, perhaps similar to your reason for doing so. I’m wondering if you take low-dose enteric-coated aspirin? I was told they’re meant to be easier on our digestion and less likely to cause stomach issues like ulcers. I’ve taken this type for over a decade and so far so good. Just an idea.
Bruising is unfortunately a common side effect of Myeloproliferative neoplasms (MPN), I believe due to having thinner blood from treatments like aspirin. I’ve currently got a mystery bruise on my chest, it’s always a guessing game what accidental bumps have caused them! If your bruises are particularly bad then do tell your doctors.
Do please let us know what your specialists say about improving those side effects you’re living with @Marky58.
4 Likes
Hi @Marky58,
So sorry to hear that this is getting you down. We would strongly recommend informing your team or GP as soon as you can so that they are aware. They may also may be able to prescribe additional medications or alternatives to help with this.
Take care,
Emma (Support Services Nurse)
3 Likes
Good evening
Having just found this forum i would like to thank you all for all of your information and support.
I have Essential thrombocythemia (ET) and my blood count is at present high i take landzoprezole and asprin and also suffer with digestive and stomach problems I also suffer with extreme cold in hands and feet and also the end of my nose. My dr dismissed these symptoms but I see that others on this forum also suffer. Any ideas to elevate this please.
Thank you
2 Likes
Sorry forgot to mention that i also take hydroxycarbamide.
2 Likes
Sue1958 Just a couple of tips that has helped me with cold feet and hands. I wear pure wool socks which are bulky but I think you can get finer ones. For the hands my physio told me to put them under warm water first thing in the morning. Also I wear fingerless gloves around the house when it’s cold. Also personally I find mittens warmer than gloves, I am really lucky to have a pair of mittens from Norway. There are a variety of different hand warmers that you can microwave. I got a foot warmer for my mum, its a hot water bottle with a cover on that you slip your feet into. I have Polycythaemia vera (PV). Warm wishes. Liz59
2 Likes
Oh Welcome @Sue1958 to our forum
Perhaps it is worth going back to your GP with the symptoms you are experiencing of your digestive and stomach problems.
@Liz59 has shared her experiences and hints that have helped her.
Oh, knee length thick woolen socks have my vote, although beware wearing them without shoes/slippers on tiled floors I recently had a very nasty fall in the kitchen, completely my fault
I also find mittens and layers of different wool gloves help me. Now don’t laugh, but I have reverted to childhood and have got my mittens attached to the sleeves of my coat so I can quickly slip them off my hands and not lose them.
My sister gave me a pair of hand warmers for Christmas, lovely and warm but they are not microwavable, and have to be boiled for 30 mins and cooled down before they can be activated every time, beware.
@Liz59 I only heard yesterday about the foot warmer you got for your mum and I think there are others in the range for hands etc.
Sorry I cannot help with the cold end of your nose though.
Really look after yourself and let us know if you find any handy hints everyone
2 Likes