Pomalyst and Darzalex

Darzalex (daratumumab) is a potent myeloma treatment by itself, but even more so when combined with Pomalyst (pomalidomide), and that is what my Dr WG wants me to have now.  I couldn't agree more.  Two studies that have benefited other people have failed for me, one after the other, and my IgG and M-Spike have increased.  Far worse, my most recent PET/CT shows five lesions in my bones including three scary ones in the spine, so it's time to bring out the big guns. I've been taking Pomalyst again now for a month, 2 mg every day, with dexamethasone (DEX) 40 mg weekly, waiting for the drugs from the most-recent study to wear off, and Tuesday I received my first infusion of Darzalex.  That was an experience.  I have been SO lucky - more than 12 years with myeloma without any infusions EVER.  That ended last December, with the last study, because one of the two study drugs was an infusion, but Darzalex is in a class by itself.  This is NOT a complaint, because we myelomiacs do whatever is required to stay alive and running marathons (or whatever) and we don't whine about it, right?  This is just a report. According to the manufacturer's Darzalex Dosage and Administration instructions, there is the possibility of an infusion reaction of some kind.  For this reason the infusion rate starts out low and builds up.  If any reaction occurs, the infusion rate drops back to the beginning.  Furthermore, the very first infusion is a s...
Source: Myeloma Hope - Category: Cancer & Oncology Tags: Darzalex infusion Source Type: blogs

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Continuous positive airway pressure (CPAP) is a first-line treatment for obstructive sleep apnea (OSA). However, the adherence to CPAP can be difficult for patients due to several reasons. In this case report we describe a patient with severe OSA who initially was treated successfully with CPAP, but after a few months adherence problems developed because of macroglossia. This was caused by amyloidosis due to multiple myeloma. During treatment with chemotherapy and stem cell transplantation, the size of the patient’s tongue decreased and he could successfully use his CPAP device again.Citation:van Loenhout L, van der ...
Source: Journal of Clinical Sleep Medicine : JCSM - Category: Sleep Medicine Source Type: research
I’ve been interested in this topic ever since, months ago, I watched an interview on CNN with the neuroscientist Matthew Walker. Eight hours of sleep, he says, is what we need. Eight hours of sleep in complete darkness (otherwise our brains won’t release melatonin, something I didn’t know…). An important point (again, something I didn’t know!): taking naps to catch up on our sleep doesn’t count. “Unfortunately, says Matthew Walker,” “sleep is not like the bank. You cannot accumulate a debt and then hope to pay it off at a later time.” And, he added, “Human...
Source: Margaret's Corner - Category: Cancer & Oncology Authors: Tags: Blogroll sleep deprivation Source Type: blogs
Conditions:   Multiple Myeloma;   Monoclonal Gammopathy of Undetermined Significance Intervention:   Procedure: Bone Marrow Aspirate and Biopsy Sponsors:   Melissa Bates;   Department of Health and Human Services Recruiting
Source: ClinicalTrials.gov - Category: Research Source Type: clinical trials
Well, well…well. I mean, you try to be oh soooo careful whenever you set foot outside your house, especially during the flu season…For example: you never go food shopping during peak times you avoid seeing friends if they have the slightest sniffle you never shake hands or kiss anyone, or, well, you try not to… My “try to avoid getting sick” list goes on and on…I repeat, I try to be sooo careful. I always carry a little bottle of hand sanitizer in my purse, for emergencies, such as, well, let’s say that, due to social circumstances, I’ve been forced to shake hands with ...
Source: Margaret's Corner - Category: Cancer & Oncology Authors: Tags: Blogroll germs and myeloma Source Type: blogs
Abstract Obesity is the only known modifiable risk factor for multiple myeloma (MM), an incurable cancer of bone marrow plasma cells. The mechanism linking the two is unknown. Obesity is associated with an increased risk of sleep apnea, which results in chronic intermittent hypoxia (CIH), and drives solid tumor aggressiveness. Given the link between CIH and solid tumor progression, we tested the hypothesis that CIH drives the proliferation of MM cells in culture and their engraftment and progression in vivo. Malignant mouse 5TGM1 cells were cultured in CIH, static hypoxia (SH) or normoxia as a control in custom, g...
Source: American Journal of Physiology. Regulatory, Integrative and Comparative Physiology - Category: Physiology Authors: Tags: Am J Physiol Regul Integr Comp Physiol Source Type: research
IntroductionThe current standard to assess chemotherapy tolerability relies on patient self-reporting. However, as the sole mechanism of managing symptom burden, this may be inconsistent and fraught with bias. Mobile wearable health devices have the ability to monitor and aggregate objective activity and sleep data over long periods of time, but have not been systematically used in the oncology clinic. The aim of the study was to assess whether the use of mobile wearable technology establishes patterns of "sleep" and "wake" states in newly diagnosed Multiple Myeloma (NDMM) patients receiving therapy, an...
Source: Blood - Category: Hematology Authors: Tags: 902. Health Services Research-Malignant Diseases: Poster III Source Type: research
ConclusionsData indicate that for parent it is important to be supported by their hematologist in the difficult task of explaining their illness to their children. The Emanuela Project allows parents to retain a parental role despite their illness; communication contributes also to increase trust in the medical staff and compliance to physically and emotionally demanding treatments.These data will be compared to those obtained in nearby hospitals who do not offer such a service.DisclosuresGambacorti-Passerini: BMS: Consultancy; Pfizer: Consultancy, Honoraria, Research Funding.
Source: Blood - Category: Hematology Authors: Tags: 902. Health Services Research-Malignant Diseases: Poster III Source Type: research
Background: As long-term survival rates for multiple myeloma (MM) improve, and patients receive more prolonged courses of treatment, individuals living with MM experience cumulative physical symptom burden and psychosocial distress. However, the relationship between physical and psychosocial symptoms in MM remains poorly understood. Sleep disturbance is a common symptom in MM, and has been linked to both physical symptoms and psychological issues, including fatigue, mood disturbance, and decreased physical function. We test our hypothesis that the interaction between physical and psychosocial health is associated with slee...
Source: Blood - Category: Hematology Authors: Tags: 904. Outcomes Research-Malignant Conditions: Poster III Source Type: research
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