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.

Hey there, I have a question. I'm now 160 days post SCTP, shortly after getting home I developed a strong craving for sweets, especially at night. Is this a byproduct of a new SCTP? Is quick onsets of hunger, bloating and weight gain normal after SCTP? Deno

Has anyone tried Red Light Therapy to help with boosting WBC, improving joint and muscle pain?

Anyone have severe muscle weakness, tightness in there legs a couple months post autologous SCT?

I recently started Pomalyst after failing on KrpolisDaraDex. We added the Pomalyst and I just finished my first cycle. I am 12 months post ASCT and failed on Revlimid maintaince before starting current therapies I mention. For anyone who is on or went on Pomalyst did you see a response within your first cycle of treatment (3 wks on 1wk off). I have Kappa Light Chain myeloma and my numbers went up not down after this first cycle. It wasn’t a big jump (122 to 150) but not in the right direction.

I recently stared Pomalyst after failing on KrpolisDaraDex. We added the Pomalyst and I just finished my first cycle. I am 12 months post ASCT and failed on Revlimid maintaince before starting current therapies I mention. For anyone who is on or went on Pomalyst did you see a response within your first cycle of treatment (3 wks on 1wk off). I have Kappa Light Chain myeloma and my numbers went up not down after this first cycle. It wasn’t a big jump (122 to 150) but not in the right direction.

Are there any studies comparing efficacy of different doses of Revlimid (lenalidomide) in maintenance? I am specifically interested in 10mg vs 15mg, but would also like to know 5mg vs 10mg vs 15mg during long term maintenance.

my husband has been on revlimid, now is on pomalyst,dara,dex.....he has acid reflux issues, his throat seems to get a pill stuck occasionally, and sometimes swallowing goes down wrong tube...he deals with it(takes applesauce with pills) but we are going to a gastro doctor who is going to do an endoscopy and maybe stretch his esophagus....(he has had this done before)...starting to feel like this is just the way of life for him and to deal with it till he can't...anyone else with these issues or any suggestions....also has back spasms, knifing pains sometimes and has had mri's on his back

I was diagnosed with stage 3a mm in 2004 at age 45. I researched the best available treatments and learned that double or tandem transplants gave the best long term results. I went to the UAMS MIRT center in Little Rock, Arkansas and got on their TT3 clinical trial which offered tandem transplants. I went into complete remission for 14 years. In December 2022 I received Car T Carvykti and have been in remission since. I continue to look at the latest mm research. Bispecific antibodies are promising, but the best research I can find in 2024 is CAR T CD 229 which kills plasma cells AND the mm stem cells. Killing the mm stem cells in theory should produce long term remission and possibly a cure because these stem cells are what regrow the cancer. CAR T CD 229 is preclinical at Johns Hopkins in Baltimore, MD, but they are planning to do clinical trials. If CAR T CD229 becomes available for me in the future, THAT is the treatment I will want because of its potential “cure” by killing the mm stem cells. For now, bispecific antibodies and the latest drugs available are what is out there. What I recommend is to get on one of these latest treatments or clinical trials and keep up with the research. I await the start of the CAR T CD 229 trials.

Baltimore-Amyloidosis Support Groups Meeting-Face-To-Face -Saturday, March 16, 2024 AL Will Meet In the AM Registration: 8:00-9:00am AL Meeting 9am to 11:30am LUNCH FOR ALL 11:30 to 12:30 ATTR Will Meet in the PM Registration - 11:30 to 12:30 ATTR Meeting 12:30 to 3pm GUESTS: "Amyloidolgists" from Johns Hopkins & Georgetown (MedStar)