From Cytokine Storm to Complete Remission

 

cytokine strom

I finally have made it to the page. Writing about this meant I had to face what happened to me. At some deep level, I wasn’t ready. I am recognizing that through this last chapter, I have become a different creature. The good news is that I am in complete remission, though for how long no one knows. The rest of the story is that I am something new on this earth, a GMO human after a therapy that has barely made it out of breaking news, living an aftermath that no one has been trained in. The articles that have made it to the Internet, still breathless with excitement over the potential, have no mention of the time after the first critical few weeks. Of course they don’t. It is the fairytale after the princess kisses the frog and turns him into a prince. What happens after that? They lived happily ever after and that is the end of the story. And so it goes for my Car t-cells and me. How long or how happily have yet to play out.

Since the CAR T-Cell therapy is so new, I will use another analogy to describe what it feels like. Remember A Stranger in a Strange Land? I read Robert Heinlein’s book, about a human raised as Mars trying to adjust to the strange world of Earth, in high school. This title comes to me as I explore the new continent of my life, as a voyager, without a real goal or a guide.

stranger in a strange landAfter transplant, I arrived at life-post-cancer with issues no one was interested in: things like metabolic syndrome, for example, or iron overload (from too many transfusions) concurrent with anemia. I found scientific papers clearly stating that insulin resistance (a factor of metabolic syndrome) was a likely result of a stem cell transplant, but there was little help to be found. Once the urgency of a menacing cancer was over, the doctors lost the intense interest in “my case” and the relationship we’d shared during the “battle” fell away. I don’t know what I expected, but not the utter lack of preparation, or even a feigned interest. That threw me back to GPs and naturopaths who had no expertise in the complexities in my health care after cancer. No wonder I commented to a local massage therapist treating the tense muscles in my forearms and the hitch in my back—“those are my research muscles”. So many isolated searches, one after another, trying to find the keys to bringing back my blood counts or health in general. Commonly held community or natural concepts about raising immunity could backfire in the case of CAR T-Cells, where the trained T-cells are going after cancer cells, but also attack B-cells.

But I’ve gotten ahead of the story. Here, as briefly as I can, is what happened to prior to coming back to the island. The “educated” T-cells were infused back into me on March 9, after three days of two types of chemo: cytoxan and the sometimes lethal fluderabine. I say that so casually, yet I am still recovering from their toxic load. The infusion itself was fast and uneventful. The very next day, however, I got hit by a cytokine storm. A little bit of information is important here. Cytokines are a hormone that signal T-cells to fight infection. They also stimulate the cells to produce more cytokines. But when the reaction becomes uncontrolled, too many immune cells are activated. This is called cytokine release syndrome. Then the healthy immune system can go into what’s called a “cytokine storm” — which can be fatal, and is, in many infectious diseases. The big flu epidemics and many other catastrophic infections involve this stupendous assault on the body.

Ilustration of a cytotoxic T cell (purple), also called a CD8 T or killer T cell, investing a tumor cell.

T-Cell goes after cancer cell. 

Back to my cytokine storm. On Day 1 following the T-cell infusion, I was hospitalized with high fever, very low blood pressure and confusion. A few days later, on March 13, I was released. Two days later, I fell into the bathtub in our borrowed Seattle home. Yes, fell, fully clothed, into the bathtub. And back into the hospital I went, with the same symptoms. Only this time, because of the fall, they insisted on doing two CT scans and an MRI to rule out concussion. Even now, I have vague dream-like memories of these hospital stays. Needless to say, I didn’t die — though others in the same situation have. We spent the next 12 days in Seattle recovering, moved twice, and took many beautiful walks in the spring flowering neighborhoods.

After another excruciating bone marrow biopsy, we were released back to the island. We went to two memorial services. I was shaky and shy of greeting so many friends after all that time in isolation. Still it was sweet to be home, back to baby Audrey and the daughters. When we prepared to go back to Seattle to hear the results of the bone marrow biopsy, we did so confidently; sure we would return to the island by the next day. Nope. The doctors told us that I was in complete remission, but that my bone marrow had 10 % “cellularity” (normal person has 30-40% and it’s what measures the bone marrow’s ability to make new blood cells), and that I had 160 replications of my old friend Cytomegalovirus (CMV). That’s not high, I’ve had way worse. Because CMV COULD suppress blood counts, which were low enough to require blood or platelet transfusions every few days… they wanted me to check into the hospital for 2 week program of Foscarnet.

This was the drug that nearly gave me irreversible kidney failure the last time they used it. I fought the decision for two weeks after as I went through two four-to-five hour infusions a day for a week in the hospital, followed by a week with the AM infusion at the SCCA and the PM infusion at home, testing our ability to handle IV fluids while exhausted. I can barely describe this Foscarnet chapter. I argued with the doctors everyday. I didn’t agree with their decision, and they wanted to do it by the textbook. I liked my doctors. They are young and smart. But I was enraged at this directive. In the end, I submitted, and my kidneys did not “go under”, though they came up to the brink. I was already aware that my reptile brain was out of the cage and ready to fight or flee. It grew to be a Komodo Dragon during this time.

IMG_0355We came home on April 19, shell-shocked, exhausted and traumatized. Time has been a healer. We are better now. My bone marrow has taken longer to recover. For awhile, it looked like it might be bone marrow failure. That’s when the bone marrow has been so injured by chemo that it just lays down and essentially dies. No more new red or white blood cells or platelets in the body unless given through transfusion. And you can’t do that long term. It seems the marrow is maybe starting to wake up now, though it has been nip and tuck for a long six weeks of waiting. I’ve had daily visits to our local hospital for blood tests and a total of 9 red blood cell and 6 platelet transfusions. But at least Steve can go back his normal activities and we both can experience the joy of being home. I am, perhaps permanently, in the new normal. We will take it. I am very happy to be alive.

For more information on cytokines, check out more this at:

https://egtheory.wordpress.com/2015/11/19/cars-for-all/

This article below is well worth reading, though I found it profoundly frightening to read someone else’s experience with CAR T-cells.

https://www.statnews.com/2016/08/23/cancer-car-t-side-effects/

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11 comments on “From Cytokine Storm to Complete Remission

  1. Upbeat, as usual. You are going to know so much about all this you could write journal article. Probably more than you’d like. Clearly Audrey is the balm for your soul. Keeping such good thoughts in my heart for you.

  2. Oh darling Shann, I just want to hug you right now! And yes, Audrey is here on earth to soothe the spirits, and in her newness reminds us of the cycles of life and love. I adore the pic of her in white with her little dangling binkie, right eyebrow lifted, and precious little smile. Moments like those expand bliss making one moment worth all the hours of “sad little details” (Greg Brown). I’m so glad you still have that twinkle in your eye and exact lifted eyebrow!!

  3. So many factors involved here, besides​ the medical, to bring you to where you are now. Visualization, positive thinking, prayers, unending support from so many souls. My thoughts are with you. Now if we can work on Dick. He actually is going to be around for awhile​. Love gcp

  4. Such a vivid description – I am in awe of your determination and courage… All the best to you!
    Love, Carol

  5. all I can say is that I am so utterly thrilled with your news, Shann………and I can’t seem to get over just how beautiful you are!!!!!! I marvel at this world and am grateful you are part of it ❤ xo

  6. I have only just started to read your account, but I just had to pause to express my gratitude – I [probably not alone] have been on tenterhooks all these months, not wanting to ask for more about what obviously was a complicated story that you weren’t ready to share yet, but gasping for more details. I agree with the idea that you should write a journal article, to help others who may be in the same void of info that you had to live through! Sending much love. (I am, by the way, in a totally new environment now – my own little house in the Hudson Valley, with only weekly forays into the hyper-stimulating bustle of NYC. I chose Poughkeepsie because it was the closest thing here to Bellingham!)

  7. oh mama. it’s intense to read your harrowing and vivid fine detail. It’s been an easy tendency for me to gloss over the detail or try to summarize your experience because its overwhelming for me to really grasp the full time job you have had the last couple of months just fighting to stay alive! I so appreciate reading your account and better understanding it, not from my perspective as I watch you everyday, but firsthand from your own vantage. You are such a gift. Thank you for being you.

  8. My Dear Niece, I have been overwhelmed by your journey from the day you were on your couch saying “what is happening?” to now. You are a true Warrior Woman. I am so proud of you, going where others have not gone before. Your Scot Ancestors have bred true. I love you so much and can’t wait to meet Audry.

  9. Tomorrow is the blood drive at the Mullis Center. Platelets can be donated by appointment. I think everyone who follows the new CAR T cell procedure is intensely interested in your day to day recovery. You are a pioneer in uncharted territory every bit as brave as any historic explorer or astronaut. You go , girl!

  10. Dear Shann,
    Once again, I find myself reading about an incredible ordeal. It’s really depressing. Why? Because you’ve suffered enough. Yet here you go again.
    And again, I’m in awe at how articulate your are in describing it all.
    I can’t pretend to understand it, but your clarity helps.
    I wish the proper medical authorities could read this blog of yours, for a wakeup call to not neglect patients like you.
    And I pray, ‘no more.’ That it stays in remission.
    What a battler you are!!
    I finally have Sundays off after working 7 days a week in iris bloom season.

    Sarah and a friend went to a dance community gathering at Breitenbush Hot Springs east of Salem, where the food is gruel and there’s no alcohol. “Have fun,” I wished her, “if that’s possible.”

    She said she’d be out of email range, but yesteerday I kidded her, when I received one, “Are you in a Mill City bistro?”
    “Close,” she said. “Detroit.” And she sent a text picture, taken by our friend Katy, of Sarah holding up a beer and a burger.”
    Love those spartan retreats.

    Steve

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