Hello! I had Abecma CAR T November 2023. From looking at other people’s posts here, maybe I shouldn’t panic about these oddball issues occurring throughout the last 4 months. Examples: continuous low red blood and platelet counts, which I know are common but had to have another biopsy anyway. Also, a couple weeks ago, after the biopsy, I took a tiny mild tumble that turned into agonizing muscle pain, especially neck/head, that hasn't completely resolved yet. And now wonky kidney numbers, and low fever. It looks like I’m not the only one with these types of after-effects. The doctors don’t really give a lot of warning of various issues down the road.

Question for those who underwent SCT, what was your M-Spike and light chains before the transplant? I have high risk MM and my numbers are plateauing. My Kappas is at 173 mg/L and M-protein is at 0.7 g/dL. Thank you!

Question for those who underwent SCT, what was your M-Spike and light chains before the transplant? I have high risk MM and my numbers are plateauing. My Kappas is at 173 mg/L and M-protein is at 0.7 g/dL. Thank you!

Hello everyone. I am a 60 year old woman, diagnosed 11-1-21 with IGg Lambda t(4,14) MM. Induction therapy KRd although dose was too high for me. I had an ASCT in June '22 with a different hospital and have been there ever since. I have been MRD neg since the ASCT, thankfully. I am currently on 1 mg Velcade and 5 mg Revlimid. I am currently moderately neutropenic. My ANC has been below .9 since last July. Originally I was told that Velcade would be stopped if my ANC fell below 1.0, then that was changed to .5. I get Neupogen if it is below .9. My ANC keeps falling. Today it is .6, dangerously close to the .5 'severely neutropenic' threshold. Even with Neupogen, my treatment will continue to suppress my immune system. My doctor, department head at a teaching hospital, continues my treatment despite my almost dangerously low ANC and I am worried that I will get very sick. Has anyone ever decided against a treatment for fear that the impact on your immune system is just too dangerous? Thank you for your thoughts.

If you already have a HealthTree account, setting up a Cure Hub profile and linking your medical records is a fairly straightforward process. Here's how to do it: 1. Access your HealthTree account: * Go to the HealthTree website (https://healthtree.org/myeloma/curehub) and log in using your existing credentials. 2. Navigate to Cure Hub: * Once logged in, look for the "Cure Hub" section on the HealthTree website. It might be available in the main menu or under a dedicated "Myeloma" section, depending on the website layout. 3. Create your Cure Hub profile: * Click on the "Create Profile" or "Join Cure Hub" button (whichever option is available). * Follow the on-screen instructions to complete your profile. This typically involves providing basic information such as your name, date of birth, and diagnosis. 4. Link your medical records: * Once your profile is created, you'll be presented with options to connect your medical records to Cure Hub. There are several ways to do this: * Automatic connection: If your healthcare facility uses EPIC, Cerner, or VA Hospital systems, you can directly connect them to your Cure Hub account. This allows automatic download of your lab results and other data. * Patient portal connection: If your facility has a patient portal and doesn't use the aforementioned systems, you can grant Cure Hub access to manually extract information from your portal. * Manual entry: If you don't have a patient portal or your facility uses a different system, you can manually enter your medical records into your Cure Hub profile. * Direct upload: If you have your medical records as digital files, you can upload them directly to your Cure Hub profile. 5. Choose your data sharing preferences: * After connecting your records, review and adjust your data sharing preferences within Cure Hub. You can choose what information you're comfortable sharing with researchers and other users. Additional resources: * HealthTree Cure Hub website: https://healthtree.org/myeloma/curehub * Help Center article on connecting medical records: https://healthtree.org/myeloma/curehub If you need extra assistance navigating your data or your Cure Hub journey, HealthTree goes the extra mile. They provide expert Myeloma Coaches, trained to offer insightful support and understanding. These dedicated coaches have additional specialization in utilizing Cure Hub to its full potential. You can even narrow your search for a coach based on location or Cure Hub expertise. Alternatively, if you prefer phone support, you can reach a friendly HealthTree Navigator by dialing (800) 709-1113. Don't hesitate to empower yourself with HealthTree's invaluable tools. Visit MyelomaCoach.org and unlock the hidden insights within your medical journey!

Hi everyone, I'm thrilled to showcase the power of HealthTree's Cure Hub! This amazing interface displays over 30 dynamic graphs based on my lab test data, spanning a remarkable eight and a quarter years, all meticulously aggregated from the HealthTree website. I am a Multiple Myeloma and AL Amyloidosis patient. I'm not a paid actor. Lol For me I monitor my Lambda light chain and a few other biomarkers. I've never had a M-spike because of my AL Amyloidosis, so I don't track it. If you used Cure Hub you can monitor any biomarker and it will even give you a description of each biomarker. You might think visualizing medical data like this is a given, but Cure Hub sets itself apart. Its unique ability to gather data from multiple healthcare facilities truly shines. In my case, it seamlessly pulls information from five different institutions, presenting it in clean columns or interactive charts. It even effortlessly combines data from two separate clinics (each with two locations) and all three of my labs. It's easy to spot the period where I received single-agent Daratumumab, my fourth line of treatment, and decipher its impact on my life! This was about Jan 2017. But Cure Hub's magic extends far beyond visualization. It offers a plethora of features to help you centralize and comprehend all your medical information in one convenient hub. I urge everyone to give it a try – it's free, secure, and seamlessly connects your medical records. If you need extra assistance navigating your data or your Cure Hub journey, HealthTree goes the extra mile. They provide expert Myeloma Coaches, trained to offer insightful support and understanding. These dedicated coaches have additional specialization in utilizing Cure Hub to its full potential. You can even narrow your search for a coach based on location or Cure Hub expertise. Alternatively, if you prefer phone support, you can reach a friendly HealthTree Navigator by dialing (800) 709-1113. Don't hesitate to empower yourself with HealthTree's invaluable tools. Visit MyelomaCoach.org and unlock the hidden insights within your medical journey! #healthtree

Keep an eye out for mergers and acquisitions in the healthcare provider marketplace. How can they affect your ongoing care?

I'm curious if anyone has noticed any impact on liver functions during VRD treatment. No other symptoms were observed, but during our monthly liver function tests, elevated levels were detected for SGPT/ALT, SGOT/AST, Alkaline Phosphatase, and Gamma Glutamyl Transferase (GGT). Any feedback would be greatly appreciated.