What I wish I knew about Multiple Myeloma treatments 25 years later...

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Multiple Myeloma-Chemobrain Underreported in Autologous Stem Cell Transplant

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“Patients with multiple myeloma who undergo autologous stem cell transplant (ASCT) experience negative impacts on physical and cognitive functioning (chemobrain)…”

It makes sense. Autologous Stem Cell Transplantation (ASCT) to treat multiple myeloma (MM) means high-dose chemotherapy. Chemotherapy is toxic. The human brain is a sensitive organ. Toxic chemotherapy damages human organs. High-dose chemotherapy damages organs extensively.

Chemobrain is brain damage. The articles linked and excerpted below explains what happens to multiple myeloma patients who experience cognitive dysfunction aka chemobrain.

It’s not the fact that chemotherapy causes so many short, long-term and late stage side effects that bothers me. Two things bother me. When I first noticed common chemobrain symptoms I went online in order to learn more about this side effect and read countless comments from oncologists that:

  1. chemobrain occurred only in a small percentage of cancer survivors
  2. chemobrain was a temporary side effect of this small group of survivors
  3. chemobrain might be caused by the cancer itself

Like many of my other side effects, according to conventional oncology, I believed  I would heal. According to the study below, I was wrong.

The second thing that bothers me is that study after study confirms that ASCT confirs a longer remission (progression-free survival) but does NOT confir a longer life (overall survival). If your oncologist sat you down and explained to you that he/she offered two therapies. Both provided, on average the same length of life aka OS. ASCT aka high-dose chemotherapy caused a host of short, long-term and late stage side effects. But you would probably enjoy a longer remission.

Which therapy would you choose?

Okay, so conventional oncology misdiagnosed and under-reported the breadth and depth of chemobrain. What’s done is done.  How can I heal this long-term side effect?

  • Nutrition
  • Frequent moderate exercise
  • Nutritional supplementation
  • Brain games

Not only are the therapies above good for your brain health, they lower your risk of relapse. The above list of therapies is based on my own experience and a hodge-podge of studies. The studies that I’m refering to cite, for example, therapies for dementia. My thinking is that brain health is brain health. Don’t misunderstand me. I don’t think my chemobrain is 100% healed. Like my other side effects, CR from myeloma and no treatment-related secondary cancers yet, I think I’m doing well.

Do you have chemobrain? Did you undergo high-dose chemotherapy? Scroll down the page, post a question or comment and I will reply to you ASAP.

Thank you,

David Emerson

  • Myeloma Survivor
  • Myeloma Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:


Myeloma patients’ experiences of haematopoietic stem cell transplant: A qualitative thematic synthesis

“Purpose-The aim of this study was to synthesise all qualitative evidence on the experiences of myeloma patients undergoing haematopoietic stem cell transplant (HSCT)…

Results-Eight qualitative studies (reported in eleven papers and including seventy six myeloma patients) were selected in the final sample for evidence synthesis. Four themes were identified relating to patients’ feeling ‘dead’, disconnecting and isolating themselves, cognitive impairment and engagement with exercise and its benefits in recovery…

Conclusions- The burden of cognitive functioning among myeloma patients was often under detected. Nurses should ask patients regularly about their memory and any challenges they may be experiencing to their concentration and recall, Exercise during the transplant process can help improve patients’ recovery, both physically and psychologically. A structured exercise programme developed by a physiotherapist to suit the needs of each patient should be standard practice in the transplant process.”

Qualitative Analysis of Myeloma Patients’ Experience Following Hematopoietic Stem Cell Transplant

“Patients with multiple myeloma who undergo autologous stem cell transplant (ASCT) experience negative impacts on physical and cognitive functioning and may benefit from exercise throughout the transplant process, according to a study published in the European Journal of Oncology Nursing…

Cognitive deficits were also frequently observed, with patients reporting that they had poor recall and issues with short term memory and concentration. Some studies found that these negative effects were permanent, and patients often struggled to even form complete sentences. Fatigue was found to contribute to cognitive impairment and associated depression

Results of the study showed that symptom burden among this patient population is often underreported, and the authors added that nurses should engage patients frequently regarding challenges with memory, concentration, and recall. They concluded that “further research is needed on patients’ longer-term experiences of cognitive impairment and the effects of exercise on overall well-being and recovery.””

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