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Covid risk and trade offs for blood cancer patients

I haven’t heard much talk in the cancer community about how Covid has made the lives of people with cancer and their families so much more difficult. My husband has DLBC lymphoma and his doctor has told us he would likely have a very bad outcome if he got covid. So we see almost no one especially in winter. His risk is lower now as he is a year out of treatment but we still don’t have a good idea what his actual risk is. I would love to hear if others have talked to their oncologist about quantitative risk. How do you all manage the stress of not seeing family and friends or accepting you might get covid and end up in the hospital or worse.

  1. I completed 6 months of chemo 3 days prior to Thanksgiving in 2021. To celebrate we had a very small family gathering (consisting of my wife, daughter, son and myself). About 2 weeks later both my wife and I came down with covid. Neither of our children had or ever showed any symptoms or evidence of covid. Where did we pick it up? We could not figure it out. Was it someone passing in the supermarket? Was it the cup of coffee from Starbucks? We will never know.

    As your oncologist noted the immune system is weak after treatment and I did end up in the hospital on oxygen for 7 days. No one thought I would make it out alive including me . After that I faced lingering covid pneumonia . I am ok now. Following that my wife and I made a decision to continue living life carefully in spite of covid and my weakened immune system.

    In late March of 2022 we visited my daughter and the grandchildren in VA. We returned healthy with no issues. We were so glad we saw them. Little did we know at the time that just 2 months later my wife would die suddenly and unexpectedly due to heart issues.

    None of us can know what the future holds. I will say I am eternally grateful that my wife had a chance to see my daughter and grandchildren for the last time before she passed. In life we can anticipate what may or could happen. We can project fear or confidence. Life is all about choices and only you can decide what is right for you. Personally I have chosen to life fully. In fact I am now selling my home in CT and am having a new one built for me in VA. I say seize the days while you can .......Dennis( TEAM )

    1. Dear Dennis, Thanks so much for your story. I am so very sorry to hear about the loss of your wife. I can’t imagine how awful that must be for you to be suffering from cancer and lose your helpmate. My husband is very comfortable just staying home and giving up our rich social life. Even though he is always the life of the party he is actually an introvert. I on the other hand deeply miss seeing friends and family and I see no end to this isolation in site. I can’t feel comfortable perhaps bringing the virus home to my husband who is my best friend and the love of my life. So for now I just pray some of these new apps and devises that are faster and more accurate than the home tests are available soon or even better covid mutates to a really mild disease that doesn’t kill anyone. Good luck to you in your new home and I hope you find lots of happiness.

      1. I have leukemia and since covid I have concentrated on doing more outside, in the fresh air. Go for a walk (rather than go to the mall), go to a small outdoor concert (rather than a large public venue), have a picnic outside (rather than a crowded restaurant). I have gotten 2 vaccines and two boosters and my immediate family has been vaccinated too. When covid numbers are down that's when we take the opportunity to do more things in busier places.
        I live in a smaller rural community and when the virus acts up more people wear masks. We do too. The cost of living has increased, so the urge to spend just isn't there right now. I would like to travel someday though.
        Things can get lonely so I think forums like this one are really helpful.

        1. Hi Maria, Thanks for your reply. It seems like most immune compromised are doing the same thing. My concern is you don’t need a crowd to get Covid several people I know got it from one grandchild or one friend. It boils down to a lot of luck. I know people who have been exposed several times and still never got it and people who were super careful who did. I just found a new type of home covid test that is more accurate than the rapid tests. It’s called a molecular test and it takes 30 -60 minutes but it costs ~ 30 bucks per test. Still new things are coming soon I hope that might make it easier for us to see the people we love. Living in western Oregon it is hard to see people outside very often due to the rain but I do my best. Take care of yourself.

          1. Hi Maria, I’m so sorry you lost people to Covid. even though many of my friends still work in medicine no one has had a severe case and several of my friends have still not gotten covid even though they are working have kids in school and travel! One amazing thing to me is that one of my friend’s mothers is 99 who lives in assistive living got Covid twice and took Paxlovid and never even got very sick!! Oh and she has CLL too so go figure because I just read that about 12% of people who are dying now from Covid had no underlying conditions. One good thing is that I just bought a new type of covid home test called a molecular test and it is about 97% accurate and well before the person is contagious as it works like a PCR test. It takes 30 to 60 minutes to get results. It’s kind of speedy ($31 on Amazon) but I will be glad not to have to do 5 days of isolation every time I spend a few days with friends I can just do a rapid test maybe wait one day and do the molecular test and if both are negative I’ll be able to stop isolating from my husband. So 🤞maybe things will get better.

          2. It sure is confusing and I think we are doing particularly well despite being high risk. I do hope that this resolves for you soon. Isolating ourselves this way sure isn't easy.

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