Multiple Myeloma and Cancer News
See the August newsletter for information about:
- Is a COVID-19 Booster Vaccination the Answer for Myeloma Patients?
From the IMF, Dr Durie's blog July 15, 2021
See the July newsletter for information about:
- Our IMF Support Group rep, Kelly Sidorowicz has created guided audio meditation
and yoga videos as part of the Myeloma March Awareness campaign. These interactive
programs are free and very interesting. I listened to the meditation one
and tried the chair yoga. It is not as easy as you think. Word to the wise...
do not do the chair yoga in a rolling office chair! Not a good idea. Check
She did a nice job! mam.myeloma.org/mind-and-body
- IMF website, they have recently updated their “Myeloma Terms and
- From the Myeloma Crowd website – an update on A Skin Patch Administration of Lenalidomide in Multiple Myeloma?
- Co-pay assistance programs update as of June 7, 2021
See the June newsletter for information about:
- House of Representatives Holds Drug Pricing Hearings
- IMF website, they have recently updated their “Myeloma Terms and Definitions” guide.
See the May newsletter for information about:
- CDC's “Choosing Safer Activities” chart. Dr Durie points out that some activities are listed with and without masks.
- Neutralizing Antibody (NAb) Test
- Tip card from the IMF on the recently FDA approved Pepaxto (melphalan flufenamide).
- Chart that illustrates the treatment combinations: “Now and Then”.
See the April newsletter for information about:
- FDA approves isatuximab-irfc From the IMF website – Two more drugs with FDA approvals.
- What Is Ide-Cel? Dr Durie discusses this in one of his podcasts which is available on the IMF website.
- I joined the Santa Fe Myeloma support group meeting this week for a session on Freelite testing. Got an interesting website for you. Www.wikilite.com This has always been a confusing subject for many of us. Hope this helps.
See the March newsletter for information about:
- Living Well with Myeloma presentation on Building
Your Resilience During Challenging Times
- f IVig (intravenous immunoglobulins)
See the February newsletter for information about:
- An On/Off Switch for CAR T Therapy in Multiple Myeloma
- The IMF’s “Best of ASH webinar: What Myeloma Patients & Caregivers Need to Know” is now available for replay: https://www.myeloma.org/videos/best-ash-2020
- The new Blenrep tip card
- Also included is a letter that the IMF Advocacy group has sent to all state governors requesting vaccine priority for cancer patients.
See the January newsletter for information about:
FDA Approves XPOVIO® (Selinexor) as a Treatment for Patients with Multiple Myeloma After at Least One Prior Therapy December 18, 2020
See the December newsletter for information about:
- Financial assistance grants from Mission Myeloma for Wisconsin residents
- Study Results Show Selinexor (XPOVIO) with Bortezomib and Dex to be a Convenient and Effective Triplet Combination
See the August newsletter for:
The annual Multiple Myeloma Patient
and Caregiver Symposium - Saturday, September 19th
This year’s MM symposium will be virtual, held on the same date that was originally planned to host the in-person event, Saturday, 9/19. They are still finalizing agenda details. The event will not be quite as long as the in-person would normally be, but will still include providers from various healthcare
institutions like UW-Madison, Froedtert, Medical College of WI, Pro Health, Aurora, etc.
Also, save the date for 2021. Hopefully meeting in person next year on Saturday, August 21, 2021.
For new folks to the group, I encourage you to check out this sign up selection from the IMF. Sign up on the IMF website. As always, publications are free to be mailed to you. You also can download the PDF versions. IMF SUBSCRIPTION OPTIONS below:
- Myeloma Minute Weekly Newsletter
- Myeloma Today Quarterly Publication
- IMF Advocacy Updates
- IMF Diversity Initiative
- Member Events Notifications
- Webinar and Teleconference Series
See the July newsletter for:
The annual Multiple Myeloma Patient and Caregiver Symposium that has previously been held in in Pewaukee, WI will be a virtual event this year. It is scheduled for September 19th . More details to follow from our contact, Maria Voermans, Froedert Hospitals and Clinics.
Early Data for Teclistamab Shows Deep Responses in
Janssen Pharmaceuticals has reported preliminary results from the first-in-human phase I dose escalation study of teclistamab for patients with relapsed or refractory multiple myeloma. Teclistamab is an investigational bispecific antibody targeting both B-cell maturation antigen and CD3 receptors on T-cells. The treatment achieved a 67% overall response rate among 12 patients who received the highest dosage, with 3 of the patients achieving a complete response. The full results of the clinical trial will be reported at the ASCO20 Virtual Scientific Program. (More in the newsletter).
See the June newsletter for:
Correction to the newsletter: the email address for Greg is email@example.com. (Not crowd.org.)
From the current newsletter:
See notice about Myeloma Crowd giving away 95 face masks.
See the May newsletter for:
Our condolences to the family of Dr. Timothy Donovan. (See Newsletter for more).
From Jayne: The status of our in-person support group meeting is still undetermined. I have reached out to other support groups that meet at UW facilities to see if they have any information about when and how our meetings might resume. What will they look like moving forward? Will there be limited numbers of people able to attend meetings? Will there be requirements like hand sanitizers, masks, etc.? Will there be a reduction of meeting time? I will keep you updated as I learn more. There is the possibility of a virtual meeting but I don't know that this is what we all need right now.
Subcutaneous Daratumumab Receives FDA Approval The US Food and Drug Administration (FDA) approved DARZALEX FASPRO™ (daratumumab and hyaluronidase-fihj, or a subcutaneous shot of daratumumab) for the treatment of multiple myeloma patients. This new, fixeddose formula reduces treatment time from hours to minutes with similar impact as the longer IV administration. (See Newsletter for more).
International Myeloma Foundation Announces FDA Approval of Sarclisa (isatuximab-irfc) The IMF has a publication on this new approved medication but they are not mailing any yet. Here is the Tip Card. You can always read the PDF version on the IMFwebsite.
See the April newsletter for:
International Myeloma Foundation Announces FDA Approval of Sarclisa (isatuximab-irfc) (see Newsletter)
Horizon study results - Melfluten for Refractory Myeloma Treatment
See the March newsletter for:
Coronavirus and Myeloma Patient Safety - Information from Dr. Durie, IMF.
The PROMISE Study
The PROMISE Study is a collaborative research project screening individuals at higher risk for multiple myeloma.
New Fact Sheet Available from LLS
This new fact sheet provides information for patients and their families about minimal residual disease (MRD), which refers to the small number of cancer cells that remain in the body after treatment.
Click here to download the PDF or order a free copy.
From the LLS Patient Education Team
See the February newsletter for:
Two of our group members have passed away.
From the latest group email:
Questions for Cameron Ninos, UW Pharmacist (with answers, PDF file)
See the January newsletter for:
- Can Bone lesions progress when all other tests look good?
- Fatigue..... one the most common complaints. Have you ever had a tough
time explaining how your feel to your loved ones?
- Some group members were asking about “Chemo Brain”. Here is a link to a segment that the IMF did on this subject. Segment was produced October 2015.
Multiple Myeloma Symposium Files (PowerPoint, others)
A Message from Froedtert and the Medical College of Wisconsin Cancer Center:
Just a quick note to let you know that the presentations from this year's Multiple Myeloma symposium have been posted and are available for viewing/download. Many of the files are too large to email so please visit this link to access the files.
We look forward to seeing you at the 2020 event! Save the date: 9/19/20!
Brand new booklet
from the IMF Educational Series.... Understanding
Peripheral Neuropathy in Myeloma. This can be viewed online and is very
well written. Very comprehensive and will expand what you may already know
about this subject. Bet you didn't know about “Pickle Juice”?
Our group member, Georgia passes along this information about a class that she has joined.
I have just started a “Strong Bone” class and I love it! It meets at our village hall in McFarland. It really works ALL of your muscles and is good for balance. The leader had a change in her bone density and started this class. It is actually fun and it is for men and women. There is music and laughter and so much easier to exercise with others. The hour goes by quickly and it's a good feeling mentally. I had tried it out before transplant with another instructor and loved it. After transplant, still love it! Highly recommend it to all.
Attached to the January email: Time to talk about Multiple Myeloma
Please see the December, 2018 newsletter for news about approval of a new drug therapy (EPd) for treatment of relapsed or refractory myeloma in patients who have received at least two prior therapies
MMRF introduces MyDRUG (Myeloma – Developing Regimens Using Genomics) clinical trial. (More in the December, 2018 newsletter)
From the IMF website....
Multiple myeloma drugs fall into various drug classes, proteasome inhibitors (PIs), immunomodulatory drugs (IMiDs), alkylating agents, corticosteriods, histone deactylase inhibitors (HDACs), bisphophonates, and monoclonal antibodies (MAbs).
Medicare said that
it will cover CART-T cell therapies for certain types of lymphoma and leukemia.
CART-T uses gene therapy to turbocharge the patient's immune system cells,
reprogramming them to harbor a “receptor” that zeroes in on cancer
and to grow hundreds of millions of copies. These revved up cells are returned
to the patient's bloodstream and can continue to fight cancer for months and
years. Side effects can be severe. Studies have shown the treatment to be
highly effective against
certain cancers. Researchers are working to add more types to the list.
Lots of interest for this one... What is GSK 2857916, also known as belantamab
mafodotin? Quote from Dr Durie, “The GSK product is an important monoclonal
antibody which targets BCMA, which is the B-cell maturation antigen on the
surface of myeloma cells. It is a unique product in that it is combined with
a drug, it is called a drug conjugate. And, this is very important because
when the antibody binds, the drug conjugate is imported into the myeloma cell
and leads to more complete destruction of the myeloma. And so, this agent
has now been given a name, a very long name,
belantamab mafodotin. GSK folks have decided to abbreviate this name to “Bela”, very similar to “Dara” for daratumumab. And so, you’re going to be hearing this agent referred to as “Bela.”
Results show that this monoclonal drug conjugate has a 60 percent overall response rate in patients with relapsed/refractory myeloma. And this is incredibly important because this is an off the shelf product against this BCMA target, which is what is the target for CAR-T cells, BiTEs, and other much more complicated and expensive therapies. There has been a rapid approval designation from the FDA as well as a prime designation by the EMA. With any good luck, the results of the ongoing DREAMM II, part II study, will lead to submission to the FDA, and hopefully, approval later this year or early next year.
Course for A Cure 2018”
The 2nd annual golf outing was held on August 13, 2018. The event was a huge success. During the dinner presentations, the Mt Everest climb was not shown. Time did not permit. Our Dr Ben participated in this climb to raise funds for the MMRF.
However, the 13-minute video can be viewed on Facebook. Here is the link to the video if anyone would like to see it: The cinematography is quite stunning and the stories are inspiring.
is an excerpt of the IMF letter
in response to the Department of Health and Human Services Blue Print to Lower Drug Prices and Reduce Out-OF-Pocket Costs -July 2018. This is a subject that we should all be very concerned about. (PDF)
Winter 2016/2017 Edition of Myeloma Today: ASH Highlights and More
“Immune System, Unleashed by Cancer Therapies Can Attack Organs” by Matt Richtel
Multiple myeloma and the chemical Permethrin (see news)
The BOSTON Trial Now Enrolling Patients with Relapsed or Refractory Multiple Myeloma
From the February 2018 Newsletter:
CancerCare has received 1.1 million in funds to provide financial assistance to those folks coping with a cancer diagnosis. See their website for more information about qualifying for these funds. The money goes fast so don't delay.
From the June 2018 Newsletter
Managing Peripheral Neuropathy
A guide for people with myeloma
New Shingles Vaccine Shingrix: What You Need To Know
In October 2017, the FDA approved a new shingles vaccine, called Shingrix. New Shingles Vaccine.docx
Cancer Incidence among Pesticide Applicators Exposed to Permethrin in the Agricultural Health Study
Permethrin is a chemical that makes insect repellant clothing.
"We found no associations between permethrin and all malignant neoplasms combined, or between permethrin and melanoma, non-Hodgkin lymphoma, leukemia, or cancers of the colon, rectum, lung, or prostate. We found elevated and statistically significant risks for multiple myeloma in the highest tertiles of both lifetime exposure-days (RR = 5.72; 95% CI, 2.76–11.87) and intensity-weighted lifetime exposure-days (RR = 5.01; 95% CI, 2.41–10.42), compared with applicators reporting they never used permethrin; these results are based on only 15 exposed cases. These findings were similar across a variety of alternative exposure metrics, exposure categories, and reference groups."
“Managing Peripheral Neuropathy, A Guide For People With Myeloma” from Myeloma Australia.
If you get a chance to read this one, it is worth your time. Very interesting and I learned much more about peripheral neuropathy. It is attached for those folks that have internet capability. Click here to download the PDF file.
New Study to Create and Test Personalized Vaccine Against Multiple Myeloma. Click here to download the Word document.
UW Health surgeon, Dr. Ben Marcus will be participating in “Moving Mountains for Multiple Myeloma” to raise money and awareness. In March of 2018, he will join a team of doctors, nurses, researchers, and patients to climb to the base camp of Mt. Everest. Every dollar raised goes to the Multiple Myeloma Research Foundation's valuable efforts to treat and cure this disease. Ben Marcus was recently diagnosed in December 2016.
Check out Ben's donation page for more information:
The New York Times December 3, 2016
This article is a must read. Immunotherapy drugs are an exciting option for some patients. They are not without sometimes serious and life-threatening side effects. They offer real
promise but real risks. Google the above title and learn about the new immunotherapy drugs.
Click here to read the article
The International Myeloma Foundation just published the new issue of "Myeloma Today," their quarterly news magazine. The link is below for those interested in reading it.
Heggestad Obituary Kay was a member of the Madison Multiple Myeloma
Support Group. Her self-written obituary is making its way around social
media. Her family was interviewed by Madison Channel 3 for the 6 PM and
10 PM news on Monday, January 16, 2017. The video title is:
Woman's self-written obituary goes viral. You may view it here.
You may contribute stories via email at firstname.lastname@example.org
Our group member, Joe Ripp is just finishing up his 3rd musical CD with 14 original songs. He intends to sell the CDs for $11.99 with 100% of any monies over the production cost to go to UWCCC Trillium Fund. He plans to have a sample CD that we can listen to at our next meeting. His goal is to be able to donate at least $8.00 from every CD to UWCCC Trillium Fund. He does not want any income from this endeavor and intends to give a tax write off to anyone purchasing a CD.
Madison Magazine has announced their top doctors for 2016, chosen by their peers. Dr. Callander was named as one of four winners in the Oncology, Hematological category.
Click here to view the results and scroll down to Oncology, Hematological category (categories are listed in alphabetical order).
A Mouse that Roared: Lori Alf's Fight Against Cancer and the Miracle Cure that Saved Her (Cured of an agressive form of Multiple Myeloma by an immunotherapy)
Two new multiple myeloma drugs approved in one week!
FDA Approves Ninlaro for multiple myeloma
Ebling Library at UW has a number of health databases available free to the public. Click for more information.
Blood cancer treatment may age immune cells as much as 30 years. A news article about autologous stem cell transplant effects. -From Matt
I-O Talks: Immuno Oncology in Multiple Myeloma, a video (12:35 minutes long) presenting new research into treatment for multiple myeloma. -From Kay
says a study found its cancer drug more effective than rival drug (from
the Los Angeles Times)
Amgen says Kyprolis doubles progression-free survival vs Velcade (from Reuters)
FDA Approves Ixazomib,
the First Oral Protease Inhibitor to Treat Myeloma. This Is the Second New
Myeloma Drug Approved This Week
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