Continuing the discussion from Essential Thrombocythemia:
Hi, my name is Amanda and I have MPN(essential thrombocythemia) I have had this for 25 years and would like to think I lead a relatively normal life. Yeah I have blood tests very regularly and have to be sensible contacting people with infection, coughs and colds. I have been shielding during the pandemic. I am a dental nurse and this has meant I have had to stop all clinical duties and shield. I am awaiting my second vaccine but I am a bit worried about what is surfacing about the antibodies of people with my condition and similar blood cancers. Will this mean I cannot resume my dental nursing And if so what is safe for me to do to earn a living. I have been medicated with interferon successfully for many years now.
Oh @Amanda1, firstly a great big welcome to our forum. You have really shown that no matter what our blood cancer is we probably all share similar, fears, thoughts, feelings, questions and practicalities.
You also touch on the issue that is often not talked about - financial issues and earning a living.
The Blood Cancer UK gives us reliable information and their website talks about just this issue, but perhaps whoever you deal with medically about your MPN is the person to talk about effectiveness of your vaccination(s) with your medical history.
WE are here to support each other and if you would like to talk you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at email@example.com
Please keep posting as I would like to know how you get on.
There seems to be some suggestion that people with ET need worry less about Covid than those with other blood cancers, but our numbers are so small, it’s hard for anyone to be authoritative. If you (or your local haematologist) can get in touch with either Prof Clare Harrison at Guys (she’s ever so approachable and helpful) or Prof (think he’s now Prof) Adam Meade at the John Radcliffe in Oxford, they are probably the most likely to have the best data on this.
Also probably to point out that the recent studies have been for small numbers of people, didn’t centre on one particular kind of blood cancer and were mostly people currently or recently having treatment which might have affected the results. No need to panic I’d say and the study hasn’t even been peer reviewed. I’d take your lead from your medical team rather than listen to the many conflicting headlines coming out at the moment which are really not helpful to people like us. I hope that things work out but if you need to talk about it the support service does a really great job.
Does anyone know if a study focusing on MPN patients and including all the main types MF, ET, PV is being undertaken in any country? I would imagine many patients would be happy to join if it meant just completing s questionnaire and having antibodies measured, in a place free of Covid.
I don’t know of any such study @jumbo4, I will copy @Alice_BloodCancerUK and @SuBloodcancerUK, just in case they can help.
Thank you for that information I will see if I can get hold of any of the people you have me too Ed, very informative thank you
I would definitely be interested in taking part in such a trial, like you said I am sure there would be a lot of people with different MPN’s wanting to take part,
A really good question. There looks to be some gaps in studies looking at MPNs, with current studies unlikely to provide conclusive data. However, as you may know, Blood Cancer UK have set up the Blood Cancer Vaccine taskforce to help identify and address potential gaps in Covid-19 vaccine research for patients with blood cancer. You may find it useful to take a look here - Coronavirus (COVID-19) vaccine research studies - NHS as it allows people to sign up to be contacted about taking part in covid vaccine research.
Please be assured we continue to monitor and update our Covid vaccine efficacy for people with blood cancer webpage..