Chemobrain is no laughing matter

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Kathy LaTour blog image

OK, we have all done it. Forgotten something and then laughingly blamed it on chemobrain, that cotton candy brain that came to stay to a greater or lesser degree with chemotherapy. I even make a joke about it in my one-woman show when I say I tell those women in chemotherapy for breast cancer that they know they have chemobrain when they are having an intense discussion with someone and they cannot remember his name – and they are married to him. It's funny but it's not funny. I can remember in my support group back in 1989 when friends would talk about losing their minds. Their cancer was no longer a problem, but they could not go back to work because they couldn't remember how to do whatever it was they did. Our oncologists swore it was the lack of estrogen – or at least that's what mine said. He said it was normal with the loss of estrogen when the chemo shut down my body. Whew eeee. That don't cut it anymore because we know now it's not just women, and it is many different kinds of cancer – and, finally, because of our complaints, the condition has been studied and they have found it is real. I didn't have chemobrain during treatment – well, I don't think I did. Maybe I am really a rocket scientist or maybe I would have been compelled to get a PhD if it hadn't been for chemotherapy. But now that I am having the age-related issues where I can't remember where I put something or someone's name, I can tell you that my frustration level has given me new insights into what those women went through. Chemobrain is, if not the first, one of the first side effects of treatment that was studied as a result of patient input - that's the nice way of saying we were really upset and they finally heard us. I guess the oncologists heard the word frustrated enough to get their attention that something was going on here. I can remember talking to a friend who was an attorney who loved arguing cases in court. She was really fast on her feet and loved the back and forth quick witted banter. She could really think on her feet. But after chemotherapy, she had to find another way to express herself. That is a huge loss of self esteem and all that makes us who we are. One of the reasons I wanted to write the story on rehabilitation for chemobrain in the current issue was to give some options of what people can do about it. It's one thing to say, "we know it's real and it's not in our head" and another all together to talk about ways to improve it. I hope the story gives you some options to try. Let me know. And if you have discovered your own solution tell us in the comments section.

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For patients with cancer, the ongoing chemotherapy shortage may cause some anxiety as they wonder how they will receive their drugs. However, measuring drugs “down to the minutiae of the milligrams” helped patients receive the drugs they needed, said Alison Tray. Tray is an advanced oncology certified nurse practitioner and current vice president of ambulatory operations at Rutgers Cancer Institute in New Jersey.  If patients are concerned about getting their cancer drugs, Tray noted that having “an open conversation” between patients and providers is key.  “As a provider and a nurse myself, having that conversation, that reassurance and sharing the information is a two-way conversation,” she said. “So just knowing that we're taking care of you, we're going to make sure that you receive the care that you need is the key takeaway.” In June 2023, many patients were unable to receive certain chemotherapy drugs, such as carboplatin and cisplatin because of an ongoing shortage. By October 2023, experts saw an improvement, although the “ongoing crisis” remained.  READ MORE: Patients With Lung Cancer Face Unmet Needs During Drug Shortages “We’re really proud of the work that we could do and achieve that through a critical drug shortage,” Tray said. “None of our patients missed a dose of chemotherapy and we were able to provide that for them.” Tray sat down with CURE® during the 49th Annual Oncology Nursing Society Annual Congress to discuss the ongoing chemo shortage and how patients and care teams approached these challenges. Transcript: Particularly at Hartford HealthCare, when we established this infrastructure, our goal was to make sure that every patient would get the treatment that they need and require, utilizing the data that we have from ASCO guidelines to ensure that we're getting the optimal high-quality standard of care in a timely fashion that we didn't have to delay therapies. So, we were able to do that by going down to the minutiae of the milligrams on hand, particularly when we had a lot of critical drug shortages. So it was really creating that process to really ensure that every patient would get the treatment that they needed. For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.
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