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Why You Should Never Do any Work or Write any Posts while in a Cytokine Storm

In science and medicine, information is constantly changing and may become out-of-date as new data emerge. All articles and interviews are informational only, should never be considered medical advice, and should never be acted on without review with your health care team.

Here is the post that I started from my hospital bed while in the midst of my Cytokine Release Syndrome (CRS) from my CAR-T therapy for my CLL (chronic lymphocytic leukemia).

should NEEDINGING T LEsrt 2 yeRS mre than hundred pPtiinrts, but theese RE H JUAT GUESTS nd mY BE Wy off

It trying to say nothing like this … needing at least 2 years and 100 patients more, but these are just guesses and may be way off.

First, the obvious: When you are out of it, you don’t always know how out it you are. I had long phone conversations that I barely recall.

Second, CRS and the related neurotoxicity can be subtle but still have profound effects on intellect and emotions. I was often tearing up and completely emotionally labile with little insight into my behavior.

Third, not just CRS from CAR-T, but CRS from other potent therapies such as flavoperidol and others with the risk of tumor lysis syndrome (TLS) and even some old school chemo such as fludarabine also can be associated with similar spells of confusions and unpredictability.

So here is my strong advice:

  • Don’t do any work when you are sick with CRS or even from some chemo.
  • Have someone you trust proof read everything you write.
  • Avoid phone calls with anyone other than your care providers and loved ones.

Fortunately, almost everyone fully recovers. I have heard from CAR-T patients who were in long comas that are now 100% back.

So whatever work you are doing, it can wait.

Concentrate on getting well and recovering.

Stay strong.

We are all in this together

Brian

5 Responses

  1. Hello Brian,
    Greetings for Ireland. I have been following your Cart blog and am delighted to hear that you are now now making a good recovery, which is great news for your family and also yourself and hope that you have a wide grin across your face😊.
    For the past number of years, I have avoided anything realated to CLL. I simply did not want to identify with it and have found this technique to be of great use. As a retired adult general and mental health nurse, with specialised training in analytical psychotherapy, I am am thinking of setting up a support group her in my home town of Wexford, Ireland. This would not have any affiliation to the more broader support groups found on the web, i.e., CLL Society, CLL Ireland. People of course derive much, much positive benefit from peer group support and they are to be fully endorsed. However, I feel that there is also something good about having face to face, regular contact with fellow CLLers. I recognise that there many motives, within myself, for me wanting to do this and recognise the more self serving ones but I hope that my reasons are tending towards the more altruistic pattern of things. So I am really writing to see if you would think this a good idea. I respect you long time expertise in all things associated with our common naughty cells!
    Like you, I too love the Beatles and hope that you will soon be be able to listen to Sgt. Peppers Lonely Hearts Club Band in the comfort of your home and family.
    With Every Good Wish to you Brian.

    Maurice Furlong,
    RGN, RMN
    Cert psychodynamic tech.

    1. I think peer to peer meetings are invaluable. We have many free resources that can help you get a group going on the right foot that you can use or not. Reach out if I can help. CLL Ireland does great work and I would reconsider at least an informal link with them as they can help you get the word out. Let me know if you want me to make any connections. Going it alone is also good, but why reinvent the wheel. I can’t express the value I get out of my local support group. All our actions are a mix of altruism and self serving. Stay strong. Brian

  2. I don’t mean to laugh, but can’t help it. This is good stuff. Brian, your will is stronger than the verbal brain circuits right now. I think you should rest. Work can wait. I’m glad you took a stab at it though, for the nice chuckle it gave us.

  3. Dear Brian,
    Thank you very much indeed for your most kind and positive response and comments, all which I have taken on board. I realise that you may not have been in the mood or feeling physically lousy and that it may have taken a lot of effort to reply to my message, but you did. Thank you very much indeed Brian. When you are up to it and are feeling better, I would very much appreciate it if you would kindly make a connection for me with CLL Ireland. I have wrote to them, some days ago now, but have not heard anything back. So I am reaching out to you. However, I understand the seriousness of your current ordeal, relating to Car-T and don’t really want you to do anything which causes you any stress brought about by having to be of help to others when you are very poorly. So there is no rush.
    On a personal note, after I was diagnosed, I became angry with some people, who did not deserve to be the object of such untoward feelings. I did not realise it, but I had a serious depression which I had to be treated for with SSRIs. I never thought that as an retired professional healthcare giver that I would succumb to depression.From this experience, I realise that many others people may have undiagnosed mental health issues which may necessitate medical intervention. My aim of setting up a support group, which would be run on supportive psychotherapeutic lines, enabling peer group support, the enabling better coping mechanisms, bonding, the sharing of thoughts about, ie, the unknown future, fear of dying (“staring at the sun”- Yalam), encouraging whenever appropriate, catharsis, the important part of religious belief, etc, etc. From a professional point of view, I would also be aware and on the lookout for any signs of mental illness and suggest that that a review by a GP may be necessary. I expect you know all that stuff anyway😊.
    I note with interest that your wife, Patty, is a musician. I too have been a musician and artist for most of my life(guitarist: watercolour)and found music and painting to be great distraction during my days of working within the NHS in the UK and still do. I have been learning to play the bluegrass banjo for the past 4 years. I play a Deering Saratoga Star. My, an arduous and difficult instrument to learn. Earl Scruggs was something else! I can almost get through Foggy Mountain Breakdown now, bit still struggle with it. Phew! It must be lovely to have a much beloved musician around you, in Patty.
    Thank you Brian for all which you have done and continue to do for us all. The CLL community is a much far better place because of you. And so, in your words, I hope that you too will “Stay Strong”. The Old Testiment suggests that our days are numbered three score years and ten. I think that the way and progression CLL treatment is now going, that we will, all of us, go far, far beyond those years.
    Thank you once again for your most unexpected and kind reply Brian. I was surprised and taken aback that you responded when so poorly. I am feeling somewhat guilty for having taken the liberty to write to you knowing what you were going through. This can wait.

    Please rest and get well soon.
    Take care Brian.
    Good day Sunshine!
    Maurice

  4. Like Bob Larkin above, this post made me laugh. Your advice, based on your own experience with CRS is much appreciated.

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