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

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!!❤❤❤