Myeloma/COVID-19 Past Webinars


These are the past webinars by the Multiple Myeloma Research Foundation (MMRF) and Levine Cancer Institute (LCI).  


For me these webinars are encouraging.  I see the passion each of these medical experts have to keep their myeloma patients safe.  Also the collaborative effort to share information about COVID-19 and its impact on myeloma patients is astonishing.  All these videos are available on YouTube.  
Past discussions can be found on the MMRF’s YouTube page.
Link: https://www.youtube.com/playlist?list=PL6YqSpftWXYb72xEXIuDERUU4ibmJF7ZY

May 12, 2020: Dr. Graham Jackson joined Dr. Hearn Cho, Dr. Saad Usmani and Dr. Zainab Shahid to discuss the European and American experiences with COVID-19 and myeloma. 
Watch the video: https://youtu.be/CtcIaBANVIE

May 5, 2020: It is important for patients to focus on their mental health during the COVID-19 pandemic. Mellisa Wheeler from Levine Cancer Institute  and Jessica Kreitman from Tisch Cancer Institute at Mt. Sinai joined the weekly discussion on COVID-19 & myeloma. These social workers shared their experiences and programs to assist patients with myeloma during the pandemic. 
Watch the video: https://youtu.be/rZ2shF7_UBA

April 28, 2020:  Dr. Hearn Cho, Dr. Saad Usmani and Dr. Zainab Shahid discussed their experiences and updates with COVID-19 and myeloma.  Dr. Shadid discusses a clinical trial of  XPOVIO (Selinexor) for treating COVID-19 and her role as principal investigator at LCI in this international study.
Watch the video: https://youtu.be/Hy4zKxMWsFQ

April 21, 2020: Dr. Hearn Cho, Dr. Saad Usmani and Dr. Zainab Shahid join Dr. Bill Wood, Associate Professor of Medicine UNC-Chapel Hill in Bone Marrow and Cellular Therapy Transplant, Dr. Nikhil Munshi, Dana-Farber Cancer Institute and Professor Harvard Medical School, Dr. Jeffery Zonder, Karmanos Cancer Institute and Professor at Wayne State University School of Medicine, and Dr. Noa Biran, John Theurer Cancer Center and Assistant Professor at Hackensack Meridian School of Medicine at Seton Hall University.  They discuss opportunities for cooperation and data sharing for the benefit of patients. Each doctor also shares how COVID-19 is impacting their geographical location. 
Watch the video: https://youtu.be/YASrgC-b0do


April 14, 2020: Dr. Hearn Cho, Dr. Saad Usmani, and Dr. Zainab Shahid host Dr. Noopur Raje who shares her personal experience with COVID-19,  as a patient, caregiver to her husband, and doctor. They also discuss COVID-19 and myeloma
Dr. Raje is the Clinical Director of the Center for Multiple Myeloma at the Mass General Cancer Center.
Watch the video:  https://youtu.be/ah4fRUEjzuA


April 7, 2020: Dr. Hearn Cho, Dr. Saad Usmani, Dr. Zainab Shahid, and Dr. Syed Ali Abutalib, Associate Medical Director, Hematologic Malignancies and Stem Cell Transplant Program, Cancer Treatment Centers of America, Zion, Illinois and Associate Professor at Rosalind Franklin University of Medicine and Science, discuss COVID-19 and myeloma.

Watch the video: https://youtu.be/BJvrFUtxXE4

Update: Complete Remission!

Brandii and I received amazing news in the last few weeks.  My doctor upgraded my progress from very good partial response to complete remission! Complete remission occurs when there is no detectable cancer in scans, bone marrow biopsies, and blood tests.  


After my induction chemotherapy (Revlimid, Velcade, and Dexamethasone) I achieved a partial response. 100 days after my stem cell transplant, I reached a very good partial response. Finally a year after my stem cell transplant, and ongoing chemotherapy maintenance treatment (3 weeks on, 1 week off), my multiple myeloma is in complete remission.  I share my progress to provide others with information.  I didn’t realize that patients continue to improve even after the 100 day mark from a stem cell transplant.  


Complete remission would not have been possible without the Keep Pounding Rob team.  Your prayers, friendship, kindness, and support lifted my spirits and gave my strength and resolve to fight the beast known as cancer.  “No one fights alone!”  Thank you!   


Also I want to express a huge amount of gratitude to the medical professional at Levine Cancer Institute (LCI).  My entire experience at LCI has been amazing.  From first being diagnosed due to a broken arm with surgery the following day to my current state of complete remission, LCI continues to provide me with expert care and support.  I will post later on the extraordinary measures that LCI implemented to keep patients safe during this pandemic. 


In multiple myeloma, complete remission doesn’t mean a cure.  Currently, multiple myeloma is an incurable blood cancer.  All myeloma patients live with the knowledge that we may relapse at anytime.  However, we also have the encouragement and hope of new and novel treatments.  When Brandii and I attended a myeloma conference last year, we were relieved to see all the treatments available to relapsed patients.  

To all my fellow myeloma fighters and their caregivers “Keep Pounding!” and “Fight Like a Beast!” 

Definitions: 


Complete remission occurs when there is no detectable cancer in scans, bone marrow biopsies, and blood tests.  


Partial response is where the patient has a greater than 50% (≥ 50%) reduction in any plasmacytoma and serum m-spike.


Very good partial response is where he patient has a greater than 90% (≥ 90%) reduction in any plasmacytoma and serum m-spike. 

Stem Cell Transplant: Today

Side note: For those new to Rob’s blog, welcome! Feel free to read Rob’s journey on this blog, from diagnoses to stem cell transplant, to living with Mulitple Myeloma through the 1 year anniversary of the transplant today, 2/27/20!! 🙂 🙂 Please don’t hesitate to contact us at KeepPoundingRob@gmail.com if you’d like to talk with another Multiple Myeloma patient and/or caregiver. 🙂

Rob, 1 year post stem cell transplant, February 2020:

Message from Rob:

Today is an emotional day, marking the one year anniversary of my stem cell transplant.  

I would like to thank everyone, who follows this blog.  I appreciate your prayers, friendships, and reassurances over the past 18 months.  I couldn’t have made it without you.  I cannot adequately express how your friendship and outreach helped me.  I will forever carry a deep appreciation and unbounded gratitude for your acts of kindness. 

Multiple myeloma is a rare form of cancer.  With multiple myeloma, the body produces too many plasma cells.  This leads to weaken of bones, fatigue, and increased vulnerability to infections. Like any cancer, multiple myeloma is a barbaric invader that attempts to overtake your body.  While wearing a “cancer fighter” button, a kind stranger whispered in my ear to “fight like a beast.”  These few words made a lasting impression on me and encapsulate the “keep pounding” mindset. 
Alone, I would never be able “to fight like a beast.” 

Without the expert care and compassion from the cancer team at Levine Cancer Institute, my myeloma would not be under control.  They are some of biggest encouragers and supporters. Without each of my friends who reached out to Brandii and me, I would not have experienced the same level of healing. 

My friends have been encouragers, prayer warriors, and diversions from cancer.  Without my family, I could not have made this journey.  Brandii is amazing and is a constant source of love, encouragement, and support. Every family member has contributed in countless ways to help me fight like a beast.  Without people reading Keep Pounding Rob and sending thoughts, friendship, and prayers, I could not have made the same progress. Without the kindness of strangers, multiple myeloma might be winning the fight. There are countless people who donate for research, participate in 5k walks and runs to bring awareness and support, and pray for healing and cures.  Finally, some strangers will see you and smile or share encouraging words. These small acts lift my spirits. 

Again, thank you.  Each of you have enabled me to have the strength, the faith, the resiliency, and the persistence to keep pounding.  

“Many people will walk in and out of your life, but only true friends will leave footprints in your heart” – Eleanor Roosevelt

Stem Cell Transplant: Then

Hi Keep Pounding Rob Team!

Stem Cell Transplant: Then

We wanted to pick a few pictures that signify a year ago today, when Rob began the stem cell transplant for Multiple Myeloma.

Side note: For those new to Rob’s blog, welcome! Feel free to read Rob’s journey on this blog, from diagnoses to stem cell transplant, to living with Mulitple Myeloma through the 1 year anniversary of the transplant today, 2/27/20!! 🙂 🙂

Please don’t hesitate to contact us at KeepPoundingRob@gmail.com if you’d like to talk with another Multiple Myeloma patient and/or caregiver. 🙂

Part of the stem cell transplant. We are so thankful to the stem cell transplant team!!

Stem Cell Harvest, a two day procedure that harvested one million stem cells. 1/3 to be used for the transplant, 1/3 to be used for research, and 1/3 to be stored in reserve. The Apheresis Unit at Levine is outstanding on so many levels!

Each foot represented a walk down the hall, often times with great difficulty but incredible determination. The caring teams at Atrium 4B had these feet that Rob picked up after each walk. They were so encouraging, and helped Rob gain a new appreciation for walking in general, and they are truly angles here on earth.

Playing some cards during his 2 1/2 week stay (the first time, and his 1 week stay the second). If anyone new to the stem cell transplant world is reading this, cards and board games help pass the time after transplant.
Ringing the bell on 4B, on the way home from Rob’s stem cell transplant!

Thankful

Happy Thanksgiving Keep Pounding Rob friends and family! 😊

A quick update on labs and eyes (yep, plural).

The monthly labs look great!! The multiple myeloma remains inactive. We are so thankful beyond words!

Rob’s right eye that had the detached retina is healing well, though taking longer to heal. He hopes to have full vision in that eye around the New Year.

Now on to Rob’s left eye. Rob started seeing spots, swirls and a black curtain in his eye after the hematologist appointment two days ago.

When we called the retina specialist, they said to come in and not eat or drink anything between that time and the appointment.

Luckily, what Rob was experiencing was not a detatched retina, but retina tears. The retina specialist was able to perform a laser procedure to repair the tears.

We are so thankful it didn’t involve surgery! Rob’s vision should be clear in that eye in a week or so.

Despite these setbacks, we are so thankful to have made such progress from this time last year!!

I mean this with all of the sincerity I can express on a blog- we could not have gotten this far without the Keep Pounding Rob team!! Ya’ll are the most kind, loving and thoughtful people ever, and we are so fortunate to have each of you on our side!!

Happy Thanksgiving, and much love to you all!!❤❤❤

Monthly Labs and Eye Update

Hi Keep Pounding Rob team!

Rob’s monthly lab work looks great! He will will continue chemotherapy, 3 weeks on, 1 week off.

“If your disease re-appears, we have trials!” A heartfelt quote from Rob’s hemtologist, during the appointment today.

Without the past multiple myeloma drug trials, patients would not have had as good outcome now verses 10 years ago.

Rob told his doctor today he is ready to participate in a trial if his cancer relapses. It feels good having that plan and mindset in place- especially as he remains in “Very Good Partial Response.” Not as good as complete response, and thankfully not as bad as no response.

On a much  lighter note- check out this creative and fun surprise that one of his nurses gave us:

A Halloween hand filled with candy!🎃😊👍

On to the eye update:

Rob has been following the surgeon’s orders of lying down all day and night on one side with the exception of 3 10-minute breaks. He is able to walk up the street and back once a day- using the cane as a precuation since he still can’t see out of that eye.

The longer time to get his eyesight back is due to the many other tears they saw during surgery, in addition to the detached retina.

He probably won’t be able to see out of that eye for another few weeks. We will know more on this Friday, along with an update on positioning restrictions. I’ll post an update here after the appointment.

While Rob wasn’t able to go to the Multiple Myemoma Research Foundation (MMRF) 5k this past weekend, I went and picked up our shirts and some other goodies. More about this awesome event in the next post. 😊

Thank you to all that supported us in the walk! We have big plans for MMRF 5k next October (date to be announced) including team shirts for our Keep Pounding Rob walkers and runners!🚶‍♂️🚶‍♀️🏃‍♂️🏃‍♀️👍👊🎉🎉🎉

Thank you so much for your thoughts and prayers!!!

Darn Bump in the Road

Rob has a detached retina and hemorrhage, and will have surgery tomorrow.

The stem cell transplant put him at increased risk for it, as did family history.

We are thankful to add an excellent eye surgeon to his care team!

Surgery is scheduled for 11:45 tomorrow, and I will update afterwords.

Thank you for your continued thoughts and prayers!!

Keep Pounding Room at LCI

Levine Cancer Institute (LCI) has a new room for patients and caregivers to relax in, while in between appointments and testing.

We stopped in briefly this morning and took a few pictures. This is a welcome addition for cancer patients and families!!

More pictures and much more information to come. For our new friends to LCI, this is located next to Lori’s gifts, in between LCI I and LCI II buildings, on the 3rd floor (right around the corner from Caribou Coffee).

Good report with a slight detour

Great news, the labs from today look great!! Once again, no active multipe myeloma! Thank you for your prayers and thoughts, Keep Pounding Rob team!!😊👍😊👍

Now for the slight detour:

Today at Rob’s monthly infusion, Rob began having trouble seeing out of his right eye. It came on fast, and he could not tell you how many fingers you held up, and then couldn’t tell you the color of your hair. Right now, he can’t see you wave at him standing a foot away.

After consulting with the hematologist, we were worked into the ophthalmologist office. We learned that Rob had an eye bleed, causing Rob to not see out of his right eye. The good news is that there is no damage to the optic nerve.

They think the blood should drain within 48 hours, and then his vision should return. Rob will then see a retina specialist.

He doesn’t think it is multiple myeloma related, thankfully!

He did mention wanting Rob off of the daily aspirin that he is on (to prevent blood clots caused by the chemo), but also understands this might not be possible. We’ll know more on that next week.

Hopefully, this is a minor issue that comes with age and nothing else. We will know more Wednesday, and post an update then.

Thank you for the continued prayers and thoughts, Keep Pounding Rob team!!