I have been having tests for over 4 years. I had a routine blood test, as i was feeling rough at the start of covid. My platelets came back high. Referred to haematology, they kept sending me back to my local hospital for repeat blood tests. Had reoccurring flu symptoms, aching hands, tired all the time. swollen and hot patchy legs and feet and now have unexplained blood in my urine. Normal iron levels, negative for jak 2, negative rheumatoid arthritis, amongst other tests. All negative but still high platelets. They have now said that they have done all testing and cant figure it out so they have discharged me. Im 55 so they said im not at risk. When i 1st went to them they were talking about a bone marrow biopsy but said they couldnt justify doing it. All comes down to funding. They mentioned essential thrombocythemia but now they wont even see me. Im still worried as i dont know why my platelets are still high. Should i be worried?
Hi @sharon1 great to hear from you again, but I think that I can feel your obvious natural anxiety when I read your post.
It sounds as if you have had a lot of tests to rule conditions in and out.
Normally it would be back to your GP at this stage to consider other options.
If you wished to pursue the haematology route because they feel they have done all the tests they can and discharged you, then perhaps you might consider PALS the Patient Advice and Liaison Service via your hospital.
The waiting and not knowing are horrible and I feel for you.
It is so difficult as perhaps your symptoms are so general.
As to whether you should be worried, I reckon you are going to worry till you get to the bottom of this…
Be ever so kind and look after yourself and please do let us know how you get on xx
Hello @sharon1. So sorry to hear your concerns and the uncertainty you must be feeling. Just to say that there are other genes apart from the JAK2 gene implicated in Essential thrombocythemia (ET) and other Myeloproliferative neoplasms (MPN)’s. For example I have the CALR gene mutation. I think there is another one too called the MPL gene. If you want to pursue this further it might be worth asking for these other genes to be tested. Thinking of you. I hope you get the answers and reassurance you need. Warm wishes Willow xx
Hi @sharon1
Thanks for posting.
I can see that you’ve also posted in January and I’m so sorry to hear that you’re still looking for answers to your symptoms. I can only imagine what a year it’s been for you with the not knowing and all the tests.
We would suggest you go back to your GP to talk further about what may be causing your symptoms. I wonder whether you were given answers as to why Essential thrombocythemia (ET) was ruled out? It could be good to ask the question directly and see if you can get some reassurance from the answer. You have had a lot of tests to rule things out, but there are more avenues to follow such as blood tests to explore issues with your immune system. So, another conversation with your GP is the starting point to look into this.
Given you are posting here, I suspect you are still worried about blood cancer. This is a useful resource to monitor your symptoms and share the information with your GP: Blood cancer symptoms guide | Blood Cancer UK Shop As the info says, it is OK to ask direct questions to your doctor - not always easy, but writing them down in advance can help.
If it would also help to talk things through and work out what questions to ask your GP next, please don’t hesitate to give our Support Line a call. You can speak in confidence to one of our Support Services Nurses by calling our free Support Line on 0808 2080 888 .
Like @Erica says, I suspect it’s impossible not to worry when you’re unsure. Be very kind to yourself and please do call to talk things through if it will help.
Warm wishes,
Ali
Hi Willow,
I’ve been reading your posts, and I noticed that you mentioned having the CalR mutation. I wanted to share that Christie’s Manchester, under Prof. Sommerville, is conducting a clinical trial specifically focused on myelofibrosis and the CalR gene mutation. The trial involves immunotherapy, and it could be a great opportunity for you.
If you’re interested, I recommend reaching out to Christie’s directly or asking your consultant for more information.
On a personal note, my dad also has the CalR mutation but has unfortunately progressed to Acute myeloid leukaemia (AML), which means he’s not eligible for the trial. However, I thought this information might be valuable for you.
Take care!
Hi @ad7854
Thanks for your comment on this. I just wanted to add that we have a Clinical Trials Support Team, who are here to answer questions and support anyone considering a clinical trial or interested in finding out more. Here are the details: Clinical Trials Support Service | Blood Cancer UK
Take good care of yourself,
Bests,
Ali
Hello @ad7854 and thank you for thinking of me. I am really sorry to hear about your father’s situation. I live nowhere near The Christie Hospital and have a number of unrelated rather complicated health issues apart from the myelofibrosis. Fortunately I have an excellent haematology team at my local hospital and have recently started a new drug that has now been approved by NICE for people in my situation. Warm wishes Willow