Multiple Myeloma and Cancer News

See the May newsletter for information about:

• IMF Videos, Podcasts, Modules & Replays
  All of these can be found on the IMF website.
  
  • CAR T-Cell Therapy Explained in Under 1 Minute
  • Multiple Myeloma Treatment Breakthroughs Watch Here
  • High-Risk vs. Standard-Risk Multiple Myeloma: What Patients Need to Know in 1 Minute Watch Here
  • Navigating Multiple Myeloma with Patient and Care Partner Team Todd and Diane Kennedy Watch
    
  IMF Resources & New/Updated Publications • IMF Resource Library
  All of these can be found on the IMF website
  
  Click on “Knowledge is Power” publications.
  • Myeloma Terms and Definitions
  • Tip Cards
  • Multiple Myeloma Medications
  • Guide to Myeloma Drug Names
  • Clinical Trial Fact Sheets
  • ABBV-383
  • K36

At our last meeting there was some discussion about Bile Acid Malabsorption causing some severe diarrhea and gut related problems. This can be a result of chemotherapy and radiation.

During our conversation it was mentioned that Colestipol (Colestid) was prescribed to treat this condition. It is important that patients have a full screening and diagnosis for this condition before Colestipol is used.

Diarrhea and gut problems can be related to more than the bile acid situation. Speak with your doctor as other medications could be available to treat this short term.

See the April newsletter for information about:

• What is Aphexda?
  Aphexda (motixafortide) is a medication used to increase the number of circulating stem cells before they are collected for a stem cell transplant. More information can be found using this link.
  
• Attachments on Chemo Brain (PDF files).

See the March newsletter for information about:

• What is Myelo? What is Myelo? The International Myeloma Foundation Launches Myelo: The First AI-Powered Responsive Chatbot to Provide Compassionate Myeloma Support for Patients, Care Partners, and
  Healthcare Professionals.

See the Febuary newsletter for information about:

• Landmark Study Shows Daratumumab Significantly Delays Progression in Smoldering Myeloma Posted: Dec 10, 2024
  • New research presented at the 2024 American Society of Hematology (ASH) Annual Meeting demonstrates that early intervention with daratumumab can significantly delay the progression from smoldering multiple myeloma to active disease in high-risk patients.
  • Key findings after 5.5 years of follow-up
  • How Does Daratumumab Work?
  • Safety and Quality of Life
  • Looking Ahead
    
• Barriers to Proper Genetic Testing? Understanding FISH Access
  
• What is Myelo? The International Myeloma Foundation Launches Myelo: The First AI-Powered Responsive Chatbot to Provide Compassionate Myeloma Support for Patients, Care Partners, and Healthcare Professionals

See the January newsletter for information about:

• Downloads include financial assistance information and pain management

See the December newsletter for information about:

• Our condolences to the Family of Patricia Koval Long time group member, Patricia Koval passed away November 18, 2024 (See more in the Newsletter)
  
  
• Revlimid and Lenalidomide
  We have been advised that Revlimid has been taken off some of the formulary listings for 2025. They do include Lenalidomide, we have been told. Our group member, David contacted the UW chief pharmacist at the Oncology Specialty Clinic here in Madison. David has talked to Jerod in the past when questions arise. This specialty pharmacy uses Sun Pharma to secure their med supply of Lenalidomide. (See more in the Newsletter)

See the November newsletter for information about:

• Our condolences to the Green family
  
  
• Flu and Covid Vaccines: Should You Bundle Your Shots This Season?
  
  
• HealthTree is coming to Madison, Wisconsin! In partnership with Dr Natalie Callander, HealthTree will be conducting a workshop. Dr Natalie Callander will soon be starting a pilot program with HealthTree. Jenny Ahlstrom, CEO of HealthTree and Dr Natalie Callander have committed to presenting at the gathering.
  
  
• FDA Approves Isatuximab as First-Line Treatment for Transplant-Ineligible Multiple Myeloma
  HealthTree Posted: Sep 23, 2024

See the October newsletter for information about:

• Comments from sending Dr Matthew Drake's presentation on Bone Health. The link is included again for those that might have also set
  it aside
  
• HealthTree is coming to Madison, Wisconsin! In partnership with Dr Natalie Callander, HealthTree will be conducting a workshop. Dr Natalie Callander will soon be starting a pilot program with HealthTree. Jenny Ahlstrom, CEO of HealthTree and Dr Natalie Callander have committed to presenting at the gathering.
  
• There is an included an article on Clinical Trials, Second Opinions and TeleHealth.

See the September newsletter for information about:

• Dr Matthew Drake's presentation on Bone Health. I have included the link again for those that might have also set it aside.
  
• REM App for Revlimid users. From our group member, David. He found that there is an app for the Revlimid REM survey that you can load on your phone.
  
• A big thank you to David and Mary Barton for their generous contribution to our support group.
  
• Another thank you for all who attended the summer picnic and contributed to the Trillium Research Fund in memory of Donald Schwartz. Georgia reports that $800 was collected and sent to the UW Trillium Research group. Thank you all.

See the August newsletter for information about:

• Our condolences to the family of Susan Trainor
  
• Blood Changes After Pesticide Exposure in Multiple Myeloma
  Navigating Your Health
  
• SEER Government Statistics
  For all the data seekers, here are some interesting statistics on cancer types, etc.
  https://seer.cancer.gov/statfacts

See the July newsletter for information about:

• Thank you to our picnic committee!
  
• Our condolences to the McNeil family.
  
• The Ultimate Marathon: My Journey With Multiple Myeloma Cancer, by Tim McNeill
  
• What is MRD testing? Posted May 29, 2024 HealthTree

See the June newsletter for information about:

• From HealthTree Foundation -posted May 8, 2024
  Is Multiple Myeloma Genetic?
  
• What Could Increase Someone's Risk Of Developing Myeloma?
  
• Start Here Myeloma - Myeloma Resource Guide | Featuring Dr. Sikander Ailawadhi
  
• Susan Benjamin, group leader from Santa Fe, New Mexico sent this information sheet. The subjects on insurance, medicare, work related questions, etc may be of interest to some of you.

See the May newsletter for information about:

• The Food and Drug Administration (FDA) announced the approval of two BCMA-directed multiple myeloma CAR T-cell therapies for use by relapsed and refractory patients. Before the approval, patients who had relapsed after receiving proteasome inhibitors, immunomodulators, and anti-CD38 monoclonal antibodies (many receiving these as part of their first myeloma treatment) had to wait until relapsing four total lines of therapy before qualifying to receive CAR T therapy.
  
  These patients struggle to find additional effective treatments and need new options. Data shows that once patients have relapsed after these three key drug classes, the average time in remission is only 3-5 months when other “standard of care” treatments are used. It is very exciting for patients to have earlier access to CAR T-cell therapy.
  
  
• Abecma Approval
  On April 4th, 2024, Abecma (ide-cel) by Bristol Myers Squibb was approved by the FDA for patients who had received at least two prior lines of therapy and had been exposed to a proteasome inhibitor, an
  immunomodulator, and an anti-CD38 monoclonal antibody. The approval was based on the KarMMa-3 clinical study, which showed a 51% reduction in the risk of disease progression and a well-established safety profile. In the study, Abecma showed three times the improvement in progression-free survival (or time in remission) compared to the standard of care (13.3 months vs. 4.4 months).
  
  
• Carvykti Approval
  On April 5th, 2024, Johnson & Johnson's Carvykti (cilta-cel) was approved by the FDA for relapsed/refractory myeloma patients who have received one prior line of therapy, including a proteasome inhibitor and an immunomodulatory drug and are refractory to lenalidomide. The approval was based on the Phase III CARTITUDE-4 study, which showed that Carvykti reduced the risk of disease progression or death by 59% compared to standard therapies.
  
  
• From our group member, David...
  Good synopsis of SE’s (side effects) for NDMM (newly diagnosed Multiple Myeloma) patients
  
  If you haven't signed up for HealthTree, you are missing out on some very good articles and updates. I encourage you to sign up today.

See the April newsletter for information about:

• From the HealthTree Foundation -What Is Myeloma Coach?
  
  The Myeloma Coach program is a free program focused on helping patients find and use the best myeloma resources. They understand that having multiple myeloma is not easy so they have put together a team of myeloma patient and caregiver volunteers who can help you. Whether that means helping you find a myeloma specialist, learning about financial resources, or using online tools that can help you live longer and better with multiple myeloma.

See the March newsletter for information about:

• Follow up information from the Leukemia, Lymphoma Society (LLS).
  Here is the link to Advocacy Page where you can sign up to be an advocate: https://www.lls.org/policy-advocacy
• Save the Date: Madison Light The Night October 10th, 2024 Henry Vilas Zoo https://ltn.stg.lls.org/upln
• Here is the phone number for the Information Resource Center: (800) 955-4572. Christina did reach out to the Financial Assistance team about the change from 12K to 5K in funding for CoPay and they gave her a similar response to what someone mentioned at the last meeting. They said they have had such a surge of families coming to LLS for Support that the funds were being depleted too fast and they changed the limit to accommodate more families.
  
• There is a new booklet that you can order or download from the IMF Educational site. Easy to take with you to appointments.
  
  Multiple Myeloma Glossary of Terms and Definitions
  
  Myeloma is a complicated disease, but the language that describes it doesn’t have to be hard to understand. To play an active role in your own medical care, it is helpful to learn the myeloma-related terms that may be used in your discussions with your doctor, who is best able to answer questions about your specific healthcare management plan.

See the February newsletter for information about:

• At the August 2023 meeting, we talked about a gap in patient care that we identified as needing a solution but we did not quite know how to move forward with this issue. I offered to write to the Carbone Cancer Center Patient Relations department to share our concerns and offer suggestions. Our intention is not to criticize or complain about current treatment.
  
• Our group member, David Barton is a HealthTree Foundation coach. He is amazing and always available to help answers questions. He sent this link for folks that want to know more about Navigators.
  
  This link does a nice job of describing the benefits of Nurse Navigators for Multiple Myeloma Patients.
  
  https://aonnonline.org/navigation-tools/4878:navigating-multiple-myeloma-the-criticalimportance-of-the-first-90-days
  
  Especially toward end of article. The added cost can lead to payback (eg. if some of the 30% of patients who don’t take their oral meds start taking them).

See the January newsletter for information about:

• In case you missed these top 5, here is a recap. Check out the Honorable Mentions too.
  HealthTree's Top 5 Myeloma Articles in 2023
  POSTED: DEC 28, 2023
  https://healthtree.org/myeloma/community/articles/top-five-articles-2023
  
• Did you make a New Year's Resolution? Maybe not but the IMF has a site to help you in a small way have a better 2024! Search www.myeloma.org
  
• The Fall edition of Myeloma Today highlights the Inflation Reduction Act or IRA. Highlights are about Out of Pocket costs for medications not to exceed $2,000 per year. Patients can spread out this cost over the course of the year via monthly payments. But, you have to opt in. More details coming.
  
• Medicare Part D coverage gap. There will be changes to this too. Once you hit the initial coverage limit, you will now pay a smaller percentage of the drug's cost until you reach catastrophic coverage phase. Then your out of pockets costs are $0.
  
• If you don't already subscribe to Myeloma Today, sign up. It is free.

See the December newsletter for information about:

• How Could My Body's Natural Killer Cells Stop Killing Myeloma Cells?
  
• Immune System Cell Exhaustion Caused by Excess Oxidative Stress and Reversed with Antioxidants
  
• From the IMF- For the first time ever, Medicare will cover dental services that are necessary before or during certainc cancer treatments.
  
• The IMF has more information on this new drug to mobilize stem cell collections when it may be difficult to get the needed volume of cells

See the November newsletter for information about:

• Condolences
  
• Have you heard about the Spoon Theory by Christine Miserandino?
  
• Discussion about the Shingrix vaccines
  
• Why is Dexamethasone Used In Myeloma?

See the September newsletter for information about:

• From the HealthTree website- New FDA accelerated approval.
  Pfizer announced on Monday, August 14th that their new bi-specific antibody, elranatamab, had been granted accelerated approval from the U.S. Food and Drug Administration (FDA) to treat relapsed and refractory multiple myeloma patients. Elranatamab is commercially known as ELREXFIO.
  
  The approval of ELREXFIO, which targets the BCMA protein found on the surface of myeloma cells, is for myeloma patients that have received at least four prior lines of therapy, including a proteasome inhibitor (such as VELCADE), an immunomodulatory agent (such as REVLIMID), and an anti-CD38 monoclonal antibody (such as DARZALEX).|
  
  
• This subject came up in a phone discussion with one of our group members. Thought you might find this beneficial to know the differences.
  Understanding Relapse In Multiple Myeloma
  POSTED: AUG 22, 2023 HealthTree
  (See the newsletter for further details)

See the August newsletter for information about:

• Condolences
  
• I (Jayne) now have these educational tool kits.
  The Multiple Myeloma Research Foundation has a new educational tool kit! I have requested 20 copies and will let you know when they are here. This will be helpful for newly diagnosed group members. It is titled “Your Myeloma Journey Guide”.
  Included in the tool kit
  
  • Multiple Myeloma Treatment Overview
  • Multiple Myeloma Disease Overview
  • Caregiver Guide
  • Precision Medicine Booklet
  • Myeloma Booklet
  • Autologous Stem Cell Transplantation Booklet
  • Immunotherapy Booklet
  • Patient Resource Guide
    
• New testing information from the IMF
  Dr Durie's blog on -Next Generation Testing
  The introduction of better therapies that frequently produce very deep response has necessitated reliable monitoring at low levels of the disease, even beyond traditional complete response (CR). Two
  types of testing have been introduced to detect myeloma at these low levels of disease.
  
• Drug Classes Made Simple from the IMF ( see the entire video on their website)

See the July newsletter for information about:

• I (Jayne) now have these educational tool kits.
  The Multiple Myeloma Research Foundation has a new educational tool kit! I have requested 20 copies and will let you know when they are here. This will be helpful for newly diagnosed group members.
  
  It is titled “Your Myeloma Journey Guide”
  Included in the tool kit:
  • Multiple Myeloma Treatment Overview
  • Multiple Myeloma Disease Overview
  • Caregiver Guide
  • Precision Medicine Booklet
  • Myeloma Booklet
  • Autologous Stem Cell Transplantation Booklet
  • Immunotherapy Booklet
  • Patient Resource Guide
    
• This is interesting research and worth sharing in this newsletter.
  REVERSING T-CELL EXHAUSTION WITH ANTIOXIDANTS
  (Clinical trial information- Lymphoma)
  
• Just a quick note on the next article - Interesting dynamics to how the body reacts to Dexamethasone. A bit technical but hang in there. It all makes sense in the end.
  The Best Time to Take Dexamethasone and Why
  From the HealthTree Foundation

See the June newsletter for information about:

• Condolences
  
• Educational tool kits.
  
  The Multiple Myeloma Research Foundation has a new educational tool kit! I have requested 20 copies and will let you know when they are here. This will be helpful for newly diagnosed group members. It is titled “Your Myeloma Journey Guide”. Included in the tool kit :
  • Multiple Myeloma Treatment Overview
  • Multiple Myeloma Disease Overview
  • Caregiver Guide
  • Precision Medicine Booklet
  • Myeloma Booklet
  • Autologous Stem Cell Transplantation Booklet
  • Immunotherapy Booklet
  • Patient Resource Guide

See the May newsletter for information about:

• The Multiple Myeloma Research Foundation has a new educational tool kit! I have requested 20 copies and will let you know when they are here. This will be helpful for newly diagnosed group members. It is titled “Your Myeloma Journey Guide”.
  Included in the tool kit :
  • Multiple Myeloma Treatment Overview
  • Multiple Myeloma Disease Overview
  • Caregiver Guide
  • Precision Medicine Booklet
  • Myeloma Booklet
  • Autologous Stem Cell Transplantation Booklet
  • Immunotherapy Booklet
  • Patient Resource Guide
    
    
• At our last group meeting, there was some discussion about making sure that you share all your concerns with your healthcare team. You may think that you are just going to “tough it out” or that it is not important enough to bring up. (See the newsletter for more)

See the April newsletter for information about:

• During the support group meeting, there has been some conversation around IVIG. Here is an explanation of what it is all about.
• Support The Safe Step Act- IMF Advocacy works continues...

See the March newsletter for information about:

• March is Myeloma Awareness Month

See the February newsletter for information about:

• Did you know you can track your myeloma using HealthTree CureHub? You can even track your myeloma from several facilities and put everything in a single place. This includes your:
  
  • Myeloma labs (manually added or with the help of our HealthTree Connect App)
  • Minimal Residual Disease (MRD) status
  • Myeloma genetics
  • Current health and fitness status
  • Prior lines of treatment and outcomes
  • Side effects for each line of therapy
  • Other important health information, like family history of cancer
    
    When you create an account at any of the HealthTree Foundation programs, such as the Myeloma Coach, Myeloma Community Program (events), or HealthTree CureHub, you get access to all of the other programs using the same username and password.
    
• An interesting article from ASH
  ASH 2022: Seniors Enjoy Life with Less Dex

See the January newsletter for information about:

• Tecvayli (Teclistamab-cqyv) receives FDA Approval
  
• Another great article from the Myeloma Today....Decisions, Decisions, Decisions.

See the December newsletter for information about:

• Bisphosphonate therapy (from the IMF)
  
• Formerly the Myeloma Crowd, the HealthTree website has many interesting features.

See the November newsletter for information about:

• HealthTree Myeloma Landing for their emails about presentations (both future and archived). There are also educational articles and materials on many subjects. Sign up today.
  
• From the IMF...Attached to the email from Jayne is their monthly newsletter. Of special interest is the updated “Myeloma Terms and Definitions” documents and the FDA approved Myeloma Treatments.

See the October newsletter for information about:

• Posted by the HealthTree Foundation September 27, 2022 by Jennifer Ahlstrom: What is Anemia in Multiple Myeloma?
  
• Clinical Trial: Testing a New On-Body Delivery System for Isatuximab in Multiple Myeloma

See the September newsletter for information about:

• Update! This is new information about the Trillium Research Fund.
  We have a new contact, Janie Winston.
  
• Talquetamab – Breaking news for another treatment option.
  HealthTree for Multiple Myeloma recently posted summary results of several studies that included Talquetamab as part of the clinical treatment program. Talquetamab is an investigational, off-the-shelf, T-cell redirecting bispecific antibody.

See the August newsletter for information about:

• Thank you to group member David for sharing this unique perspective on living with a chronic illness.
  How to live with chronic illness | Psyche Guides
• An excerpt from Dr Durie's blog of July 14, 2022 What does the future hold? Hopes and Challenges for 2022-2026 and Beyond: The Future is Bright.

See the July newsletter for information about:

• CARVYKTI Cart T Cell Therapy On February 28th, the FDA approved a second Car-T treatment for relapsed or refractory myeloma.
  Carvykti is a personalized B-cell maturation antigen. It works by finding and binding to BCMA, a protein that is found almost universally on myeloma cells.

See the June newsletter for information about:

• According to a recent study- Tixagevimab-cilgavimab (Evusheld) appears less effective against the omicron variant of SARS-CoV-2 in patients with hematologic cancer, according to research published in Cancer Cell.
  
• Some highlights of the May meeting featuring Christina Nielsen from the LLS.

See the May newsletter for information about:

• New and Updated IMF Publications in 2022
  
• From the IMF - First Generic Revlimid (lenalidomide) Launched

See the April newsletter for information about:

• When will we resume in-person meetings?
• Standard-Risk vs. High-Risk multiple myeloma
• There are a couple more updated booklets from the IMF

See the March newsletter for information about:

• The IMF’s New Tip Card on Bispecific Therapy This new tip card can be downloaded to learn more about bispecific therapy. Bispecific antibody therapies are a combination of two immunotherapy approaches in one drug. Bispecifics are comprised of two monoclonal antibodies that bind to two different antigens and trigger the immune system to destroy the patient’s myeloma cells.
• Very interesting article and easy to read published by
  the Wisconsin State Journal on Sunday February 6, 2022.
• CancerCare's CAR T-Cell Therapy: What's New
• President Biden Reinvigorates Cancer Moonshot Initiative

See the February newsletter for information about:

• Newest Publication from the IMF in printed booklet format and PDF format available now.
• Understanding ABECMA® (idecabtagene vicleucel) Abecma® (idecabtagene vicleucel, “ide-cel”) is the first-in-class BCMA-directed CAR T-cell immunotherapy approved by the U.S. Food and Drug Administration for use in myeloma. Abecma is a personalized immune cell therapy delivered as a one-time infusion, manufactured for each individual patient using the patient’s own white blood cells. The digital version of the booklet is available for viewing and downloading at the IMF website. The Master trial has generated a lot of interest and exciting results.
  ASH 2021: One Step Closer to Chemo Free Living?
• An attachment about the FDA approval of the Long Acting Monoclonal antibody