I was diagnosed with ET six months ago and am on aspirin and hydroxy with few side effects so, other than occasionally getting over tired, life as a retiree has carried on as normal.
However, I am due to attend a conference this weekend with a large closing ceremony and have learned that a friends partner is not attending because he is immunosuppressed (I have no other information about him) and worried about picking up an infection. This hadn’t occurred to me before but I wonder whether others avoid large crowds as a result of being treated for an MPN
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Triple negative means we do not have the 3 common mutations that most people have. We still have other genetic mutations that just aren’t well known. They are using next generation sequencing to learn more.
Oh really? I'm triple negative, with MDS as well as thrombocytosis, but I have never been made aware that I definitely have other genetic mutations. I just thought there might be some that haven't yet been recognised. My parents didn't live as long as I have, so wouldn't know if it's genetic in the normal sense and I have no offspring.
There are other mutations present besides the usual 3. Not enough further research and money was put into it until recently because MPN’s are such a rare cancer. I just did a lot of watching videos on YouTube and google research. There are some amazing MPN specialist on you tube. It’s the next generation sequencing that is confusing.
Yes, thanks for replying Sharkdive1, I was vaguely aware of other mutations but don't know anything about next generation sequencing - what does that even mean?
hi there. Yes I have ET & avoid large events and mask when I have to go anywhere indoors. The risk of adding Long Covid to my health problems is too great. Until there is a sterilising vaccine I’ll be doing this to safeguard what’s left of my health. It also helps me avoid things like RSV which is rampant at the moment where I live.
You are so right. I am current on Covid boosters. I am weary of crowds to begin with but sometimes can’t avoid it either. A large indoor hot rod show Autorama was the first in early March. We were there for 4 12-hour days. Though I tried to keep some distance with attendees and used disinfectant wipes I caught a nasty sinus cold. Second time is now. I enjoyed a fantastic week vacation in very busy London. First time there and being away from home in over 2 years. Barely home a day and again a nasty sinus cold I am just getting over. Never had this happen before ET. I carry and use disinfectant wipes all the time. Life happens and I’m going to try to keep enjoying it.
No, I do not avoid crowds. While my lymphocytes and neutrophils are mildly lowered by the Besremi, they are not so low that I need to take special precautions. You can check on the status of your leukocytes simply by looking at your CBCs. If you have questions about the status of your immune system, ask your hematologist to explain.
While I do not avoid crowds, I do not choose to expose myself to groups of people where there are outbreaks of infectious disease without protection. That is just common sense for anyone.
Thanks Hunter. At the moment my WBC and neutrophils are within normal ranges so I'm finding it hard to keep all the infection warnings in perspective. Your common sense approach appeals to me!
I don't even bother with WBC and neutrophils; I have enough on with haemaglobin and platelets, not to mention caring for my T1 diabetic, blind partner. I'm so tired now.
I have ET and on Hydroxy and Aspirin. I am in my 60's.I like to live a full life and won't let fear stop me,so quite often in large crowds. Be sensible, plenty of hand washing, drink plenty and avoid people you know have infection. Yes, I pick up things more easily but life is for living. 😊
I totally agree with Hunter and Pippapot. I am 63 with ET and on Hydroxycarbamide and Aspirin. I go anywhere and everywhere I can. Fly abroad 3 to 4 times a year and try to live life to the full. As I get older too many friends are succumbing to various illnesses. I just want to enjoy opportunities while I still can, within reason. I always feel that I can catch a cold from standing next to someone in the supermarket, it doesn’t necessarily have to be while in a large crowd. Just take sensible precautions and enjoy life.
I'm supposed to be immunosuppressed but I have nothing to pass on to you other than to go and enjoy yourself - if you want to go. If you don't want to go, use that as an excuse!
No I don’t avoid as you are giving up your life to worry. I fly, sail , mix with people unless you are in hospital on chemotherapy I am sure your MPN would tell you to live your life. Even these current COVID injections do not cover current strains.
I am afraid life is for living & too much worrying does no one any good .
I was dx with ET for in 2008, way before Covid. I never thought about avoiding crowds. My job entailed talking to employee groups about Insurance and then meeting with them 1 on 1. I was dx with MF in 2019, just before Covid. Avoiding crowds was essential then, but now that I’m vaccinated and the threat of Covid is decreased, I feel like I have to live my life the best I can. The only thing I don’t do are cruises but I’ve been to weddings, plays, and flew on airplanes. Having said that, you need to do what makes you comfortable.
Thank you all for your replies. I knew there would be a range of answers, reflecting both our various conditions and our lifestyles.
I plan to attend the conference and will assess the closing event at the time, but given the majority of answers which support my thinking about life being for living, I am likely to attend.
I have ET and take Hydroxy and aspirin. I don't avoid large crowds, but I am careful. Make sure I wash my hands a lot. I've never had Covid and am mostly healthy. Sometimes I get tired but I am 75 so maybe that is why I tire easily. I think you have to use your own judgement and do what makes you comfortable.
Hi, you need to speak to your hematologist and mpn specialist if you have one. I am 74 with PV for7 years and take HU, 10 per week. My hematologist and mpn specialist both say that I am not immunocompromised, all WBC's are WNL. Ask your doctors before you make any decisions. Best to you.
Hi! I have PV and am on aspirin and Besremi. I do not believe that I am immunosuppressed, my values are fine and I am not on Jakafi (which is an immunosuppressant). I do not avoid large crowds or going on public transport. I caught covid for the first time last January whilst travelling and I was fine, just a slight temperature one evening and mild symptoms.
I have ET and work in a primary school, surrounded all day, every day by children with a very haphazard approach to personal hygiene. Perhaps I am very lucky (and I don't want to to tempt Fate), but almost never seem to pick up the coughs, colds, dodgy stomachs etc. that seem to travail so many of my colleagues. In ten years, I have only had two days off work for sickness. Unless you're told otherwise by health professionals, I would recommend going out and living life to the full.
Hi. Because of my MPN & hydroxyurea I’m careful & wear KN95 masks in public & avoid large crowds. I have two friends who have long covid & I don’t want to suffer like they do. I want to be able to enjoy my life. If something was extremely important to me to attend I might consider it. I also have an additional immune deficiency disease. Good luck. Katie
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