Talquetamab & Multiple Myeloma

Hi everyone,

In trying to break up the information, here is a a short post about the trial.

From the consent forms:

“Talquetamab is an experimental drug for multiple myeloma. The purpose of this study is to see whether chemotherapy with Talquetamab is better than standard treatment for subjects with multiple myeloma.”

Dr. Voorhees, who is overseeing this trial at Levine Cancer, shares more in this clip for those interested. Thank you for being here! ❤️

https://www.youtube.com/watch?v=PUhgepIHo-M&pp=ygUbQml0ZSBwZXRlciB2b29yaGVlcyBteWVsb21h

Consent forms & pre-screening tests

Hi everyone,

Thank you for the continued encouragement, love, and support!❤️

The oncology research nurse specialist called yesterday.

She sent over the paperwork for the clincial trial consent.

Next week, we meet with his multiple myeloma specialist, followed by a meeting with the oncology research nurse specialist.

At the appointment with the oncology reaearch nurse specialist, he signs the consent forms that he reviewed last night, and that begins the process of scheduling pre-screening appointments for the actual trial.

Some of the upcoming screening tests after signing the consent forms at the appointment include (copied from the forms):

Review of medications and medical history

Physical exam by study doctor

Measure height and weight

Measure temperature, breathing rate, blood pressure, oylxygen levels

Measure heartbeat by electrocardiogram (ECG)

Imaging bone x-ray, CT Scan, PET/CT scan to look for disease throughout your body

Bone Marrow Aspirate/Biopsy

Urine sample to measure multiple myeloma proteins in your urine

Blood tests

Breathing tests

We’ll continue to update the blog and share what we learn along the way.

We are feeling excited to get started and extremely anxious at the same time.

Thank you for being here! ❤️

Tuesday, February 13th update

Hi everyone,

Thank you for being here! ❤️

Rob will begin pre-screening for a clinical trial next week at Levine Cancer Institute.

The PET scan results showed a hole in his rib bone, measuring greater than 1 inch, caused by the multiple myeloma.

His lambda light chains have spiked for a 4th time in a row.

Based on his symtoms, PET scan results, and labs, his multiple myeloma specialist confirmed active disease as the result of multiple myeloma relapse.

The clinical trial requires hospilzation in order to manage the side effects.

There is much information we are learning and will be learning, and we look forward to sharing.

To make it as easy as possible to share information here (there is a TON of information), I’ll be breaking up the information in different posts in the coming days.

One final note to those who have found our blog by looking for information on multiple myeloma. If you are newly diagnosed, a word of hope.❤️ There are more and more options for multiple myeloma patients now, even more so than 5 years ago (that’s when Rob was diagnosed). Make sure to find a multiple myeloma specialist who is up to date on the latest developments in multiple myeloma research, including clinical trials.

Thank you for being here, and for helping Rob to Keep Pounding! ❤️

MMRF Patient Summit 8/1/20

The Multiple Myeloma Research Foundation (MMRF) Patient Summit is coming up on August 1st. Details from the MMRF website:

MMRF Patient Summit – Virtual Web Conference
Saturday, August 1, 2020
10:00 AM–1:45 PM (ET)

Please join us for a FREE virtual web conference developed to provide multiple myeloma patients and their families and caregivers the most up-to-date information on myeloma management from doctors and other experts in the field. Unique to this virtual meeting is a one-hour town hall in which participants can submit questions to our expert panel electronically.

For more information, visit:

MMRF Patient Summit

Continue reading →

Upcoming Covid-19 & Myeloma Webinar

Over the past month, the Multiple Myeloma Research Foundation (MMRF) and Levine Cancer Institute have been hosting a weekly YouTube Live Session on “Managing Myeloma During the COVID-19 Pandemic.” Each week experts discuss various aspects of multiple myeloma and COVID-19.
The hosts for these sessions are:

Hearn Jay Cho MD, PhD – Associate Professor, Tisch Cancer Institute, Icahn School of Medicine at Mt Sinai; Chief Medical Officer, The Multiple Myeloma Research Foundation Saad Usmani MD, FACP – Division Chief, Plasma Cell Disorders, Director, Clinical Research Hematology Malignancies, Levine Cancer Institute; Clinical Associate Professor of Medicine at the UNC-Chapel Hill School of Medicine

Zainab Shahid, MD – Medical Director, Bone Marrow Transplant Infectious Diseases at Levine Cancer Institute
During my stem cell transplant, I received care from both Dr. Shahid and Dr. Usmani. They are wonderful doctors. Dr. Shahid assisted me as I was suffering from respiratory syncytial virus (RSV)infection a few months prior to my stem cell transplant. She worked with my hematologist to adjust my chemotherapy and infusions as I recovered from RSV. Dr. Usmani was the clinician at the transplant unit my second week. I will never forget his expertise and kindness.

This week the webinar is through the MMRF’s website. Here is a description and a link to signup:

MMRF Patient Webinar Series – Managing Myeloma During the COVID-19 Pandemic Wednesday, May 20, 20201:30 PM–2:30 PM (ET)

Patients with multiple myeloma have a number of questions and concerns regarding the COVID-19 pandemic. We invite myeloma patients and their caregivers to join us for a FREE webinar in which a team of health care professionals will review the national status of the pandemic, interventional clinical trials, strategies to manage anxiety, and the ever-changing outlook as more information becomes available. Patients will hear expert advice on the best ways to receive essential and safe care now and during the phased approach to reopening the economy.

Link to signup:
https://event.webcasts.com/starthere.jsp?ei=1311217&tp_key=21ea8da593