Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.
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The article linked below is talking about all survivors of stem cell transplants for all types of cancer. Since I am a multiple myeloma survivor who underwent an ASCT I chose to direct this article and this blog post specifically to MM survivors like me.
To make the long-winded article below short, I will boil it down to one single point. And that is:
“Be your own advocate. Advocate for your own long-term care, your own health and work with your providers on that.” The time to manage your MM is when it is at its weakest. And that time should be after your ASCT.
I’m making this one point to ASCT survivors because yes, there is stress from a possible relapse, yes, there is stress from a possible treatment-related secondary cancer and yes you may experience long-term and late-stage side effects.
In my survivor experience since my ASCT in 12/95, I have found evidence-based non-conventional therapies that research has shown can reduce or even eliminate the long-term and late-stage side effects that I’m refering to. But because these therapies are not FDA approved, your oncologist will not know much about them. If you undergo local or whole-body radiation, please consider hyperbaric oxygen therapy to heal the fibrosis that is sure to occur. Please consider those supplements that research has shown can lower the risk of MM relapse. Please consider an evidence-based, anti-MM diet.
I am both a MM survivor and MM cancer coach. Please watch the free webinar linked on the right side of this page. Let me know if you have any questions or comments.
“An individualized treatment summary and care plan reduced treatment-related distress among patients who previously underwent hematopoietic cell transplantation (HCT) for cancer treatment.
“There is distress from a variety of perspectives,” Navneet S. Majhail, M.D., M.S., Director of the Blood and Marrow Transplant Program at Taussig Cancer Institute of the Cleveland Clinic, said in an interview with CURE. “There is the fear of cancer recurrence, that is an ongoing concern that goes on for a long time. And there is the concern about psychosocial issues, like anxiety and depression, that are fairly high in our patient population.”
Survivors who previously underwent HCT are at an increased risk for long-term complications. Guidelines recommend long-term follow-up for these patients, including screening and management of any potential complications. However, as survivorship continues to improve, disparities among care can become “fragmented,” Majhail said.
“You don’t have that care coordination you need to make sure you are getting the care that you need. The whole idea of generating a care plan was to come up with a tool that could empower patients to know what kind of follow-up they need, or what kind of exposures they may have had that would put them at risk for certain complications.”
Therefore, the researchers conducted a randomized study to evaluate the impact of summaries and care plans on survivors’ confidence in survivorship information, and on cancer treatment distress, knowledge of transplant exposures health behaviors, health care utilization, and health general self-efficacy.
Survivors in the study were required to be 18 years or older, one to five years after transplantation, proficient in English, and without relapse of second cancers.
The researchers generated treatment summaries using patient-specific clinical data submitted by transplant centers to the Center for International Blood and Marrow Transplant Research (CIBMTR), and focus group feedback from patients/caregivers, HCT physicians/nurses/social workers and general hematologist and oncologists informed the design of paper-based survivorship care plans. Individualized care plans were then developed based on patient risk factors and treatment exposures such as age, sex, HCT type, graft-versus-host disease (GVHD), and use of total body irradiation or steroids. The researchers then published guidelines for long-term follow-up of HCT survivors.
“It is a two-sided, one-page treatment summary that tells patients and their providers what were the key things they got around their transplant,” Majhail, also a member of the Case Comprehensive Cancer Center at Case Western Reserve University School of Medicine, said…
The researchers observed that receiving a survivorship care plan was not associated with a change in survivors’ confidence in survivorship information, however, this was significantly associated with reductions in cancer treatment distress. They noted this decrease in distress was independent of factors such as sex, transplant type, GVHD status, diagnosis and health literacy.
“To make this study as applicable as possible, the effect we saw in improving distress, that was purely giving them this care plan,” Majhail explained. “We did not do anything else. We were not calling them every so often, doing a follow-up or getting this assessment. We gave them a care plan and then followed them six months later. So, just giving them a care plan has this effect. It will hopefully be very useful.”
Lastly, the researchers found that younger patients appeared to have higher levels of cancer treatment distress, however, patient age had no association with the impact of survivorship care plans. In addition, no effect from care plans was observed on other secondary outcomes.
In conjunction with these results, Majhail recommends that patients be their own advocates in their survivorship plans. “The key messages for patients would be to empower yourself with information about what kinds of treatments you have had, what kind of care do you need moving forward. Be your own advocate. Advocate for your own long-term care, your own health and work with your providers on that.”