Please be advised that the following message is quite lengthy, and I apologize for that. However, I urge all readers to take the time to review the information carefully and consider any necessary actions relevant to your individual journey with multiple myeloma. Unlike the typical patient, I bring a unique perspective to living with multiple myeloma, AL amyloidosis, and now CLL. My extensive knowledge, gained through personal experience and in-depth education as a HealthTree coach, Cure Hub certified coach (and Pacific Region Cure Hub co-lead), and member of the HealthTree financial coaching group, allows me to understand these conditions on a deeper level. Having absorbed nearly all of HealthTree's myeloma and AL amyloidosis resources, my nurse practitioner even suggested my clinic hire me to educate other patients – a role I'd gladly take on for the price of sushi! My hope is that the healthcare community will recognize the value of lived experience alongside medical expertise. In my own journey, a more collaborative approach, acknowledging my in-depth understanding, could have saved critical time in my treatment. That delay, unfortunately, carried significant risk On Wednesday evening, roughly an hour after dinner, a sudden and alarming decline in my health occurred. Severe illness struck rapidly, accompanied by relentless vomiting. As my responsiveness to my wife’s questions waned, she wisely called the paramedics from the fire station, conveniently located just four houses away. Their arrival was prompt; they assessed my vital signs and swiftly transported me by ambulance to the local hospital. From the outset, we diligently informed the paramedics and subsequent hospital staff of my complex and precarious medical history. This includes multiple myeloma and AL amyloidosis, conditions that severely compromise my immune system and have a documented history of leading to serious infections such as sepsis and cellulitis, among other complications. To my dismay, one of the senior firefighters made a dismissive and frankly ignorant remark, stating that “oh, sepsis isn’t all that serious.” I found this comment incredibly ill-informed and deeply concerning, especially given my medical background. Despite my clearly stated history, including three prior hospital admissions specifically for sepsis, I endured an unconscionable wait of approximately six hours in the emergency room before finally being seen by a physician and, crucially, having blood drawn. In hindsight, it is glaringly obvious that immunocompromised patients like myself should be immediately flagged within the system, triggering an expedited protocol for essential diagnostic tests. While I understand the necessity of initial assessments like vital signs, and perhaps even a preliminary echo in some cases, the egregious delay in obtaining a blood sample was unacceptable and potentially dangerous. This crucial diagnostic step should have been prioritized and initiated within the first 15 minutes of my arrival, coinciding with the collection of vitals. This valuable time was lost, time that could have provided critical information about the rapidly escalating infection within my body. Ideally, a blood draw should even be considered en route to the hospital for high-risk patients like myself. Earlier analysis could have revealed the alarmingly high white blood cell count that was already actively causing damage to my system. I arrived at the hospital around 9:00 PM on Wednesday. I was finally seen by the attending ER physician at approximately 3:00 AM and subsequently admitted around 5:30 AM. It is now Saturday morning, and I am thankfully feeling significantly improved. However, this recent hospitalization sadly mirrors a concerning pattern of delayed care. My initial extended hospitalization, lasting five weeks, was triggered by a severe and rare reaction to my first dose of Ninlaro in February 2016, a relatively new medication at the time. I vividly recall waking up in restraints, my wife somberly explaining that I had endured a harrowing three-day period of severe delirium. That single dose precipitated sepsis, and while hospitalized, I further contracted pneumonia, likely from a 2016 strain of coronavirus circulating among the hospital staff. Fast forward to the present: while my red and white blood cell counts have thankfully returned to a more normal range, the initial delay in diagnosis allowed my white cell count to surge to a dangerously high level, raising serious concerns about the potential need to remove my port – a vital lifeline for my ongoing Daratumumab infusions. As of this Saturday morning, my diagnoses stemming from this admission include sepsis (my fourth documented episode directly related to multiple myeloma), cellulitis (a regrettably frequent occurrence given my underlying conditions), strep infection, staph infection, and the frustrating continuation of a chronic urinary tract infection that we have been battling for the past four to five months. I sincerely hope the current aggressive regimen of intravenous antibiotics will finally eradicate this persistent infection. It's a peculiar observation that many significant events in my life seem to occur in sets of four. Multiple myeloma marks my fourth cancer diagnosis, following previous battles with prostate, colon, and thyroid cancer. The subsequent addition of AL amyloidosis to this list only serves to further complicate my already intricate medical landscape. Reflecting on this most recent experience, I am resolute in my belief that a six to seven-hour delay in the emergency room before essential bloodwork is performed is utterly unacceptable for patients grappling with myeloma or other incurable blood cancers. For individuals with rapidly progressing and potentially fatal conditions like sepsis, particularly when compounded by a compromised immune system, time is unequivocally of the essence. In my case, the prolonged wait allowed my white blood cell count to reach a critical point, actively causing damage, although thankfully it was brought under control relatively quickly with the administration of vancomycin. I am currently also receiving Unasyn intravenously. It is absolutely invaluable to have a proactive advocate, such as a spouse or friend, in these critical situations to push for timely and appropriate care. As I have repeatedly emphasized, time is a non-renewable resource when dealing with sepsis, and even seemingly less severe infections like cellulitis can rapidly escalate into serious and life-threatening situations. Furthermore, sepsis can inflict additional damage on vital organs, a particularly grave concern for individuals with conditions like AL amyloidosis. It cannot be overstated how critically time-sensitive conditions like sepsis are, especially for those of us with compromised immune systems. When sepsis takes hold, the body initiates a drastic survival mechanism, shunting blood flow away from the extremities and concentrating it in the core to protect vital organs as it fights the overwhelming infection. This physiological response, while intended to be protective, carries severe consequences, most notably a significantly increased risk of blood clot formation in the extremities due to reduced circulation. Without timely and aggressive intervention, this can rapidly progress to dangerous complications, potentially even leading to irreversible tissue damage and the development of gangrene. For someone already battling complex conditions like multiple myeloma and AL amyloidosis, this inherent physiological response to sepsis adds another perilous layer to the situation, making rapid diagnosis and treatment absolutely paramount to prevent irreversible damage and ensure survival. The agonizing delay in obtaining a simple blood draw directly undermines the possibility of this rapid intervention. On a more encouraging note, a recent echocardiogram revealed a positive development: an improvement in my Left Ventricular Ejection Fraction (LVEF) from 55% to 69%. This is certainly welcome news for someone managing congestive heart failure alongside multiple myeloma and AL amyloidosis. My fervent advice to anyone who is immunocompromised and experiences a sudden onset of severe illness accompanied by vomiting is to proceed to the emergency room without delay and to unequivocally communicate your compromised immune status and heightened susceptibility to infections such as sepsis, cellulitis, strep, and staph. Be assertive and insistent in requesting an immediate blood draw. Time is not a luxury in these situations; it is a critical factor, and your life could very well depend on prompt and decisive action. You cannot afford a delay in diagnosis and treatment due to prolonged waiting times in a busy emergency room to negatively impact your health or, tragically, shorten your life. Fingers are crossed for a discharge on Monday or Tuesday! And in a rather ironic twist, my birthday was yesterday – certainly a memorable present! While this wasn't quite the celebratory event I had envisioned, the most precious gift is undoubtedly being alive and on the path to recovery. This latest hospital adventure certainly brings back vivid memories of my initial, much more protracted five-week stay back in 2016 following that unexpected and severe reaction to Ninlaro. In total, I spent an arduous 15 weeks in the hospital throughout that challenging year. With hindsight, I should’ve been a little more pushy, but like I posted I was getting rather unresponsive. I was extremely weak and basically sitting in a wheelchair. They had to push me around when I needed to use the restroom. I don’t think I have the strength to get up and walk 40 feet to make it on my own.  Over the weekend, I had a significant conversation with the patient advocate at the hospital. During our discussion, I emphasized my strong hope for the near-future integration of Artificial Intelligence (AI) throughout all hospital systems, particularly within Epic, the electronic health record system utilized by Sacred Heart. I specifically highlighted the critical need for improved protocols concerning immunocompromised patients with high-risk factors, such as those of us living with Multiple Myeloma. I stressed that despite my repeated statements about having experienced sepsis on three previous occasions, there appeared to be a lack of appropriate urgency and attention to this crucial piece of my medical history upon my recent arrival. My vision for an improved system, ideally leveraging the capabilities of AI, includes a streamlined intake process where essential diagnostic tests are prioritized for high-risk individuals. I believe that within the first 15 minutes of arrival, alongside the routine collection of vital signs, a blood draw and urine sample should be standard protocol for patients with a documented history of severe infections or compromised immunity. The information gleaned from typical initial bloodwork, such as a Complete Blood Count (CBC) and a Comprehensive Metabolic Panel (CMP), coupled with a quick Urinalysis (UA), would likely have promptly revealed the critically elevated levels of my white blood cell count during my recent emergency. An intelligent AI system, capable of quickly analyzing this preliminary data in conjunction with my extensive medical history, could have readily identified the severity of my situation. This would have ideally triggered an immediate prioritization in triage, ensuring that I was seen by a medical professional within a far more reasonable timeframe – perhaps within an hour of arriving – rather than enduring the unacceptable delays I have experienced. On previous occasions at the same Emergency Room, I have waited six, seven, and even eight hours for necessary medical attention, regardless of the actual acuity of my condition at the time. While the urgency varies with each visit, the potential for critical deterioration in immunocompromised individuals necessitates a more proactive and timely approach to initial assessment. Asking whether or not, I had a medical ID bracelet. Interestingly, I don't wear a traditional physical medical ID bracelet. Instead, my critical health information is comprehensively detailed within the built-in "Health" app on my iPhone. Most modern smartphones offer a similar health section, and the beauty of it is that even when your phone is locked, emergency medical professionals have a backdoor access to view this vital data. This is a significant advantage that smartphones offer to ER staff. During my recent emergency, I was admittedly quite unwell and didn't immediately think to direct them to this readily available resource. In hindsight, I should have explicitly informed them about the extensive information stored within my Health app and offered them my phone to access it. It truly contains everything – my complete list of daily medications, a detailed medical history encompassing both my myeloma-related issues and other conditions, and even emergency contact information. I firmly believe that everyone with a smartphone should take advantage of this feature. I've been a vocal advocate for this, even sharing this recommendation multiple times on Facebook. In fact, I keep a readily accessible copy-paste version of my key medical information within the "Notes" app on my phone. This allows me to easily share relevant details, including my medical narrative, on social media. Often, these posts on Facebook contain valuable insights about myeloma and AL amyloidosis. For instance, I've shared explanations about why some individuals with these conditions don't experience renal failure or vomiting, and why the light chain ratio, while often discussed, shouldn't be the sole focus. Within this digital repository, I even have links to short, informative videos featuring HealthTree experts explaining the complexities of light chains and their ratios, making this crucial information easily accessible to others. In addition, I think everybody should get their oncologist to create a card like this. For me, I wanna have something that says I am extremely susceptible to blood infection. With my hematologist signature on it. This one might be good too for all of us to have which I am, including as this picture  someone on Facebook said that they got this from their clinic and it is standard procedure for every MM patient. I thought it’s a great idea. I took advantage with my HealthTree duties as the co-lead for the Pacific region cure hub team. I had a captive audience with the oncology nurses. I told them I had something much better than MyChart and demoed cure hub to them to several of them. They thought it was great let the patient know about the free tool with HealthTree. They asked more about it, and I gave them a dozen of my HealthTree business cards which HealthTree printed for me. I told him they can contact me anytime and I will do a demo to any patient or medical professional as a one on one or as in groups. This information comes directly from my recent hospital admission.I hope you find some of it useful and can apply it to your own life or the life of a loved one you care for.

Hi Everyone, I am 9 months post SCT. I have IGG Kappa MM. My Kappa number was rising slowly since Nov and was staying around 17.5 mg/L ( normal range 3.3 – 19.4 mg/L). In February I had flu and my maintenance therapy in stopped for 3 weeks. Since then Kappa are increasing and now its at 41. The Kappa/lambda ratio also went up to 2.2. Does this mean I am relapsing?

Hi Everyone, I am 9 months post SCT. I have IGG Kappa MM. My Kappa number was rising slowly since Nov and was staying around 17.5 mg/L ( normal range 3.3 – 19.4 mg/L). In February I had flu and my maintenance therapy in stopped for 3 weeks. Since then Kappa are increasing and now its at 41. The Kappa/lambda ratio also went up to 2.2. Does this mean I am relapsing?

Can anyone tell me if you get a strong dose of a chemo drug when you get car-t?

I would like to know how long people have stayed on Acyclovir after having CarT. It sounds like it is inconsistent.

Hi all I'm not sure if it's different in Ireland, but I had my 2nd bone marrow biopsy last week and they are only checking for to see if it is active in my bones and not the fish test/genetic side of it. Can that not change and if it does is it still classed as the first time regardless? Thanks

Neutropenic meals that got you through ASCT? Hey all - planning my meals for my upcoming ASCT in 3 days. Wondering what specific foods you were able to stomach on those "rough" days so they can be considered - be it pushing through nausea or limiting the need for pepto bismol Thanks! PS- first time posting , is there a search I'm missing so I can look though prior conversations? Thanks again :-)

I'm looking for people who have Myelofibrosis and have had any surgeries done. I have MF2 & have my estimated life expectancy is 3 years. I have a back problem where nerves are being compressed and causing my left leg to hurt like crazy when I'm on it for more than a few minutes. So far I've been able to get some relief from spinal ablation but it's not working like it used to. In the last 5 months my right hip has deteriorated to the point of extreme pain and needing a hip replacement. My Dr. tells me that I am at an extremely high risk of having a stroke or getting a blood clot if I have a surgery to correct either condition. My question is, has anyone on this board with MF had a surgery and how did it go?

I'm looking for people who have Myelofibrosis and have had any surgeries done. I have MF2 & have my estimated life expectancy is 3 years. I have a back problem where nerves are being compressed and causing my left leg to hurt like crazy when I'm on it for more than a few minutes. So far I've been able to get some relief from spinal ablation but it's not working like it used to. In the last 5 months my right hip has deteriorated to the point of extreme pain and needing a hip replacement. My Dr. tells me that I am at an extremely high risk of having a stroke or getting a blood clot if I have a surgery to correct either condition. My question is, has anyone on this board with MF had a surgery and how did it go?

64 yo. Newly diagnosed MM. Taking DVRd regimen. A few days ago, my hands started itching like crazy, keeping me up for hours at night. EDIT: I spoke to my doctor. He thinks the itching is from heightened liver functions, which seems to be from some of the meds I am taking. He gave me something to take and I also take benadryl before I go bed. My itching has pretty much stopped. I don't know if it's part of the expected neopathy, but it's not that I have lost feeling in my hands ir feet. My hands tingle and itch and I cannot figure out what to do. It has kept me up for literally hours and hours at night. During the day, it seems to come and go, but when I lay down -bam. Its 1am where I am and have been up since 11pm when I tried to go to sleep.

I’m sooo tired of hearing these damn doctors saying there’s no cure for myeloma😩 I have a specific question: This is the current situation with my mommy. She just completed 3 rounds of Cyclophosphamide. I was just informed from her medical team at Houston Methodist Hospital, that they aren’t able to tell at this moment whether or not the myeloma is responding to the treatment. My adamant goal and question is how do we find a treatment that works to prevent the myeloma from metastasizing and relapsing? It’s really heartbreaking when you have already lost 1 parent to the same type of cancer 😩💔 This has been the ongoing struggle as of late for the last few months to a year, with my mommy. The treatment will appear to work for a little while then all of a sudden fit will not work and then she’s in unbearable pain 😩Why are some people able to be in remission longer than others? What kind of treatment is working for the individuals who are in remission? I’m asking for helpful insight please🙏🏾 I can also be reached at 713.530.9807. I’m adamant about getting her into remission🙏🏾

My husband has 1q25 mm, or that’s what they found on his initial bone biopsy, but apparently they didn’t get a good enough sample for a complete analysis. He was treated with dexamethazone, Velcade, Darzalex, and lenelylaminide with excellent response, and last May had the stem cell transplant. He’s starting to relapse after 10 months. His doctor wants another biopsy… which hasn’t been scheduled yet. I’m wondering if anyone has any thoughts about our likely path forward? I’m guessing CAR-T is a possibility, but wondering if there are any other good options that could perhaps be done locally.

I am 59 years. I am patient with myeloma since 2014. On april , 2015 I had bone marrow trasplant, receiving lenalidomide later. On February 2018 began with pomalidomide and daratumumab until beginning 2024. I was w Carfilzomib, I had good answer, but I suspended it due to kidney failure. Now I had cart t cell , 40 days ago. I feel very well up to now.