2 Year Update, 4/8/21

I had an amazing appointment with Dr. Bhutani at Levine Cancer on April 5, 2021. I improved to stringent complete response (sCR) at the 2 year anniversary of my Autologous Stem Cell Transplant.  

Maintenance treatment of Revilmid continues to deepen my response. I will continue taking this 3 weeks on, and one week off, along with monthly IVIG infusions to help restore IGG deficiencies.

Last year during MRD (minimal residual disease) testing, myeloma / malignant cancerous cells appeared at 1 out 100,000 level (10^5).  Now I am MRD negative at that level. 

I continue to have some malignant cells present at 1 out of 1,000,000 (10^6).  I am grateful that I continue to respond to treatment. 

In September of 2017, plasma cells accounted for 54% of the cells in my bone marrow biopsy.  Now I am at 0.3%.  In 2017, multiple myeloma caused a fracture in my left humerus, a rib to be destroyed, and the formation of 6 other lytic lesions.

Through the amazing care of Levine Cancer Institute, I have full use of my left arm. I achieved sCR (stringent complete response) in multiple myeloma at the two year anniversary of my Autologous Stem Cell Transplant. This was the goal when my doctors recommended a transplant.

Each step of the journey, progress was being made.  After my Revilmid, Velcade, and Dexamethsone induction, I had achieved a partial response (PR).  90 days after my stem cell transplant, my response improved to very good partial response (VGPR).

At the one year anniversary of the transplant the response improved to complete response (CR).  Now I am grateful to have reached sCR. This reflects that for me multiple myeloma is a journey with twists and turns. I remember being disappointed that I didn’t achieve a higher response after chemotherapy and the stem cell transplant. This demonstrates that patience and perseverance matter.

Thank you to the wonderful team at Levine Cancer Institue, Dr. Patt and his amazing staff of orthopedic oncologists Dr. Bhuntani, Dr. Usmani, Dr. Atrash, Dr. Voorhes and Dr. Shahid and their amazing clinical nurses, infusion nurses, transplant nurses, and hematology staff.,

Every day amazing progress occurs in the treatment of multiple myeloma. I encourage my fellow multiple myeloma survivors to Keep Pounding! Please know that “No One Fights Alone!” The amazing medical advances in multiple myeloma are delivering Hope!

Thank you, Keep Pounding Rob Team!! We are so thankful for your support during the past two years! From prayers, cards, meals, texts and e-mails, your ongoing encouragement has meant so much!! Thank you!!

Thank you, WBTV!

Thanks to @WBTVNews, @PaigePauroso, and @CarolineHicksTV for spreading awareness about COVID-19 vaccines, especially to those who are at risk due to illness or disease. Rob was interviewed today after getting his first COVID-19 vaccine. You can see the clip here: https://www.wbtv.com/2021/03/15/it-means-so-much-people-with-high-risk-conditions-discuss-significance-covid-vaccinations/

Masks and vaccines have helped protect Rob since being diagnosed with multiple myeloma. Masks are required on the stem cell transplant floor, and with good reason. Rob lost all of his vaccines he had has a baby after his stem cell transplant. Every single vaccine. As such, masks became a normal way of life for a long time after his stem cell transplant.

We have trusted science and Levine Cancer Institute from day one, and he has been getting re-vaccinated for his childhood vaccines lost from transplant for the past 1 1/2 years.

Today, we trusted science again, and happily got the first does of the COVID-19 vaccine, masks included. 🙂

One of the pictures featured in tonight’s newscast was of Rob just a few days after getting home from transplant. He was home bound for a long time, due to having no immune system. If you know of anyone who has a physical or mental disability, and is not able to travel to a vaccine clinic in Mecklenburg County, you might qualify for a home bound vaccination through the county. You can call 980-314-9400, option 3 for English, and Option 8 for Spanish. Or, visit https://www.mecknc.gov/covid-19/pages/vaccine.aspx

Thank you for being a part of the Keep Pounding Team!!

@LevineCancer @WBTVNews @PaigePauroso, @CarolineHicksTV

Upcoming Multiple Myeloma Webinars

The Multiple Myeloma Research Foundation (MMRF) is offering the following free educational programs:

Virtual Patient Summit

January 23, 2021

1:00 PM – 4:45 PM (ET)

“Get the most up-to-date information on myeloma management from doctors and other experts during this FREE educational event.”

Register Here

Program Chair:
Amrita Y. Krishnan, MD

Maintenance Therapy for Myeloma Patients

January 28, 2021

1:00 PM – 2:00 PM (ET)

“Join us as multiple myeloma experts guide us through the latest updates in maintenance therapy, including its efficacy and current drugs being investigated to extend patient survival.”

Register Here

Speakers:
Ajai Chari, MD
Sagar Lonial,

Learn Your Labs

February 9, 2021 — SAVE THE DATE!

1:00 PM – 2:00 PM (ET)

“Better understand the laboratory and imaging tests patients may encounter as they manage their multiple myeloma.”

We’ll update this post with the registration link when it’s available, or visit mmrf.org for more details.

Speakers:
Craig Cole, MD
Joshua Richter, MD

Fall update

First, thank everyone for your prayers, support, encouragement, and friendship.  I continue to receive wonderful news regarding my multiple myeloma.  My blood work continues to indicate that I am in remission.  My m spike is negative.  I continue on a maintenance chemotherapy regiment of Revlimid (three weeks on and 1 week off).  After my cataract surgeries, I have 20/20 vision. 

A huge thank you to Dr. Branner, III, Dr. Weidman, III, and the nurses and staff at Horizon Eye Care in Charlotte. From my detached retina surgery in one eye, to the torn retinas treatment in both, and finally cataract surgery, everyone has been phenomenal and saved my vision.

They advised us about the potential eye problems with cancer treatments soon after diagnoses, and have been there to successfully treat every single one of them.

I created a Twitter account with multiple myeloma updates and events, along with fun topics and hobbies. Twitter search: Keep Pounding Myeloma or @kmyeloma. I’ll continue to update here as well.

Our prayers continue for several friends fighting relapsed multiple myeloma, newly diagnosed patients, and anyone facing health challenges. 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 “MMRF Patient Summit 8/1/20”

45 Appointments and Pounding

Hi everyone, this is Brandii (Rob’s wife, for our new followers).

The other day, we went to pick up Rob’s chemo at the CVS specialty pharmacy. Before Rob was diagnosed with multiple myeloma, we had no idea what a specialty pharmacy was. In short, they provide services for patients who have rare or complex diseases. It’s where we pick up Rob’s oral chemotherapy once a month. They also offer delivery, but we like flexibility of picking it up, verses waiting all day to sign for the delivery.

As I walked towards the pharmacy door, two women were ahead of me. One was going to the “Nothing Bundt Cakes” bakery next door, and the other was walking into the pharmacy ahead of me.

The woman turned right around and said “Oh, that’s not a regular pharmacy, it’s a pharmacy for “really sick people!!”…. and then she joined in her friend in the bakery next door.

I sighed as I walked into the pharmacy. Though she was telling the truth, there is so much more to this specialty pharmacy for “really sick people.”  

I thought of how fortunate for us that when Rob first began oral chemotherapy, the specialty pharmacist sat with us in his office for a half hour, and answered all our questions. He went above and beyond the call of duty, and even made sure Rob was aware of multiple myeloma support groups in the area.  Every single person in this specialty pharmacy has become family, continually monitoring Rob’s progress, much like the wonderful folks at LCI (Levine Cancer Institute).

Speaking of LCI, I was looking up an upcoming appointment time on Rob’s patient portal.  Between LCI, cardiology, rheumatology, pulmonology and ongoing eye appointments, Rob’s had 45 appointments this year. Amazingly, Rob continues to approach each appointment, infusion and procedure with the same kindness and determination that we all know and love about him.

**Real time blog update—as I’m working on this post, Rob texted me “Atrium Update. Lots of appointments scheduled” …He had no idea I was writing about this very subject. 😉 By the end of summer, we’ll add 9 additional appointments to the 45 he’s already had.

Each of these appointments, plus the specialty pharmacy providing Rob’s chemotherapy, continue to help Rob Keep Pounding!  We are thankful for it all, and grateful for each day that gives us hope! Hope for continued remission and hope a for a multiple myeloma cure!!        

Thank you for reading, and for being a huge part of the Keep Pounding Rob team! Thank you also for your blog comments! We love reading them!!

If you’re new to the blog or new to multiple myeloma, feel free to say hello in the comment section, or reach us at Keeppoundingrob@gmail.com.

Ups and Downs

First, my most recent blood tests show no m-spike.  Also, my free kappa light chains and free lambda light chains are normal. I remain in complete remission. I am so thankful to the Keep Pounding Rob Team for your friendship, support, encouragement, and prayers. 

One of the biggest adjustments to life with multiple myeloma and being on a maintenance therapy is the uncertainty of what each day will bring.  On a macro level, as I mentioned in an earlier post, there is no cure.  Relapse is almost a certainty at some point.  Whenever I have a blood test, it is in the back of my mind that relapse is a possibility. 

Today, I will focus on the micro level.  Each day it is difficult to predict how I will feel.   Most days I feel good.  Still slow days are common. Overall, I feel stronger mentally, physically, and emotionally with each passing day. 

Also, I am experiencing that how I feel can vary by each round of chemotherapy.  Each round consists of three weeks on chemotherapy and a week without chemotherapy. Most rounds of chemotherapy, I will a have few days (3-4) of noticeable fatigue and nauseous.  My chemotherapy round in May of 2020 was the worst round since I started maintenance therapy. That round I experienced between 14 to 17 days of nauseous, fatigue, and pain while taking chemotherapy.  I was exhausted by the time the week of respite from chemotherapy arrived.  Fortunately, this round has only had one rough day with this being day 12 of taking chemotherapy.

Neuropathy in my feet is my main side effect from chemotherapy.  My feet are either cold, burning, or have sharp stabbing sensations.  The best relief for me is exercise (e.g. walking or using a stationary bike).   I try to exercise four to five times a week for one to two hours a day.  Without exercising, I am up at night with the pain unable to sleep.  Sometimes, I use most of my energy for the day to exercise to control the neuropathy pain and build up strength to fight myeloma.

Friday, I woke up and felt like I hadn’t slept.  I went to walk and struggled unexpectedly. In the days before this walk, I could walk for an hour at a solid pace of around four miles in an hour.  After 30 minutes of walking and hitting the two miles, I was out of energy.  I felt nauseous.  I was a mile from the parking area and it took me over 30 minutes to walk that distance.  I came home and slept for four hours.   

Saturday, I woke up feeling much better. I was able to set my best time for a 5k at 40 minutes.  

I share this experience to illustrate that while on maintenance chemotherapy, myeloma patients can have good days and bad days.  Sometimes these bad days can become weeks or even months.  The extended periods happen from infections due to our impaired immune systems.    

In our journey with multiple myeloma, we have our ups and downs.  My goal is to continually learn how to make the most out of both kinds of days.  Whether it is a quiet day reading, playing video games, watching movies, and napping, or a day where I can be more physically active and adventurous within the new limitations imposed by COVID-19.   

Cancer Survivors Day

Today is Cancer Survivors Day honoring those who are battling cancer and those who have beaten cancer.  As a cancer survivor, I celebrate the gift of a second life from the medical professionals.   I look towards other cancer patients and survivors for hope and encouragement.  My friends, family, and our faith provide me with the strength, grace, determination, and inspiration needed to Keep Pounding.  


For anyone new to the blog, I adopted Keep Pounding as my motto after how Sam Mills battled cancer.  Sam Mills was a linebacker and coach for the Carolina Panthers. In 2003 during preseason, doctors diagnosed him with cancer and only gave him three months to live. In a speech to the team, Mills said:

“When I found out I had cancer, there were two things I could do: quit or keep pounding.  I’m a fighter. I kept pounding. You’re fighters, too. Keep Pounding!”

Sam Mills

He was an inspiration to the team, the Charlotte community, and cancer patients. He continued to coach that year as the Panthers went to the Super Bowl. He coached the next year as well before he passed away in 2005. 


A year ago,  I was recovering from a stem cell transplant for multiple myeloma.  On the last day in May, my hematologist gave me medical clearance to exercise. It was taking me 40 minutes to walk a mile.  Now, I am able to walk a 5k in that time.  Each day my goal is to become a little stronger physically, mentally, and spiritually in my journey as a cancer survivor.  Each day requires me to Keep Pounding.  


The journey with cancer is challenging,  I am still battling side effects like neuropathy, fatigue, and occasional nauseousness from my maintenance chemotherapy.  The Keep Pounding mentality is necessary for me daily.  I draw strength from fellow cancer fighters,  my friends and family, my medical team, and faith. Cancer requires us to Keep Pounding everyday.  I hope and pray for a day where no one has to suffer from cancer.  Until then we need celebrate each other as we battle cancer together. 

The Keep Pounding Room at Levine Cancer Institute, in memory of Sam Mills and in support of all cancer fighters!
Rob, last winter, in between labs and infusions. The Keep Pounding Room offers a comfortable and quiet break room for patients and caregivers during busy days at Levine Cancer Institute.

Weekly COVID-19 Webcasts

The Multiple Myeloma Research Foundation  is providing patients and caregivers with a weekly webcast concerning COVID-19 and multiple myeloma. 


Dr. Cho, Dr. Shahid, and Dr. Usmani will be hosting each session.   This will be an eight week series of 30 minute webcasts. There will be guest speakers during these webcasts. Each webcast will take place at 6 pm EDT every Tuesday from June 2 through July 21. 

Topics will include:
– Basics of COVID-19 disease (testing, treatment, and trials)
– Preventative measures
– Impact on treatment for newly diagnosed myeloma patients  (e.g. transplant     deferment) – Impact on treatment for relapsed patients and clinical trials
– Supportive care measures for patients (including bone health. Intravenous     immunoglobulin therapy, vaccinations and more)
– Social support, institutional, regional and national foundations
– COVID-19 database and specimen collection efforts
– Personal perspectives on COVID-19 infection
In order to view these webcasts, the Multiple Myeloma Research Foundation requests that you register.  


Here is the link to register:

https://event.webcasts.com/starthere.jsp?ei=1326862&tp_key=44c07e2da3


You will only need to register once to be able to participate in any or all of the eight webcasts.
I strongly encourage multiple myeloma patients and caregivers to watch and participate in these webcasts.  In my journey with multiple myeloma, I have had wonderful care and treatment from Dr. Usmani and Dr. Shahid.  They are incredible doctors who have great compassion.  They have helped me to Keep Pounding!

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