Radiation Oncology Update, April 26

Hi everyone,

We met with the radiation oncologist yesterday.

Together we reviewed and compared the images from PET scan in January to the X-ray taken a few weeks ago, specifically the new area of concern on the 11th rib. This is the one which we have been advocating for answers about, and the one Rob’s hematologist oncologist called about Monday.

In the radiation oncologist’s words, there is “substantial difference” in 11th rib damage. He said you could clearly see the damage from the x-ray taken a few weeks ago vs. the January PET scan.

His words, in part, from the doctor notes-

“Painful plasmacytoma, right 11th rib”

“Known right 3rd rib involvement but new right lower lateral chest wall pain since February, better corresponding to a new lesion recently seen on X-ray in the right 11th rib.”

Rob will begin radiation 5 days in a row, beginning next week. This is in addition to the ongoing weekly treatment at LCI and oral chemo at home.

The purpose of his radiation is to help the ongoing rib pain, which has gotten worse and constant over the last 7 weeks due to the myeloma causing bone damage.

His hematologist oncologist may order additional scans to examine the rib damage (several areas of concern). She didn’t want to order a scan until she learns what scans radiation oncology requests (so that he isn’t doubled up on scans).

We are beyond grateful for the radiation oncologist and hematologist oncologist developing a plan and timeline for Rob. 🙏❤️ We are incredibly lucky to have both of these two doctors guiding us through this. ❤️❤️❤️

We hope that this radiation will help Rob’s pain that has occurred from the multiple myeloma damage. #KeepPounding

The next multiple myeloma labs will be checked in a few weeks, and I’ll update the results here.

Thank you for your support and encouragement in helping Rob to Keep Pounding! ❤️❤️❤️

Clinical Trial Started

Hi everyone,

First, Rob’s resting at home and is doing good, considering everything he’s going through. I wanted to start with that first, and then give a lengthy update.

Rob completed day 1 of the clinical trial yesterday at LCI. This arm doesn’t require hospitalization, thankfully.

The trial is randomized, and the arm he was selected is Daratumumab, Pomalidomide, and Dexamethasone (DPd). This is also the same treatment he would have been on if he hadn’t entered the trial.

There are no placebos in their clinical trials- you are either in the experimental arm or the standard arm. So Rob is in the standard care of treatment arm.

We were at the clinic from 7:00 am until 8 pm, making for a really long and incredibly anxious day. But, it is over and all is well right now.

Here’s a (lengthy) recap. Excuse typos.

They did labs first thing at 7:15, then appointment at 8. We then had a 2-hour wait (you can’t check into infusion more than 30 minutes before your infusion, understandably). Thankfully, they have a Keep Pounding lounge with comfortable chairs and snacks, which is a good option for waiting in between appointments. They also have plenty of seating outside the infusion suite. – mentioning this as we have some newcomers to the Keep Pounding Rob blog who are also new to LCI. Keep Pounding!!

He checked in to infusion at 10:30, but then got a message while in the waiting room, saying his bilirubin and bilirubin direct labs were high, and this may delay treatment. This was unnerving to hear, to say the least. While they were slightly elevated by .1 from last week, they were up by .1 this week. When they called him back to the infusion suite, we were hopeful and nervous at the same time.

Thankfully, his hematologist oncologist advised him to drink lots of water and retest. He literally “Kept Pounding” many bottles of water they kindly offered, and the second labs met the requirement to proceed.

It is important to note that had it not been for the trial, Rob probably would have been able to go ahead with treatment to begin with, despite the level being slightly elevated (barely high). This was just a trial protocol that had to be met.

If needed for any reason, Rob can withdraw from the trial at any time, as his treatment would remain exactly the same, without the trial protocols in place.

This is something we are keeping a very close eye on as we proceed, and we are so grateful to his AMAZING hematologist oncologist and nurse extrdoinare for doing the same. These two individuals are amazing in their knowledge, help, and advocacy. ❤️❤️❤️

After he got the ok to proceed, he had the premeds (including the Dexamethasone), then had to wait an hour, then they administered the drug Daratumumab.

After receiving the Daratumumab, he had to be observed for 6 hours, due to the possibility of a reaction. Going forward, he won’t have this long of a wait after receiving the med. There will still be observation, but not near as long. Being it was the first time getting this drug, we were thankful to have that observation, just in case something had went wrong.

He will begin taking the oral chemo, Pomalidomide at hone every night.

The Pomalidomine makers advises you shouldn’t operate machinery (like driving) after taking it. We are beyond thankful (once again), for his hematologist oncologist said taking it at night was a good idea with that in mind. It is important to take this medicine at the same time each day.

Rob is feeling tired, as he didn’t sleep well with Dexamethasone from yesterday. He is also coming off of 4 nights of not sleeping due to anxiety. However, he thinks another night of two of getting better sleep will help.

The Supportive Oncology department (formally known as Palliative Care) gave him the ok to increase his sleep medicine. Hopefully, trying this will help get him back on track for regular sleep soon.

We are grateful for everyone on his team at LCI, and appreciative of their help with this multiple myeloma relapse and treatment, from his doctor and nurse, trial nurses, infusion nurses- everyone. ❤️🌻🌷

We have more to add, but wanted to give a recap of yesterday first.

Thank you for helping Rob Keep Pounding!❤️❤️❤️

Trial starting next week!

Rob is scheduled to begin the clinical trial next week, at least according to the patient portal (pending final trial approval).

However, we have no idea which arm of the trial he is scheduled for, but hope to know that soon. 2 of 3 arms requires hospitalization to monitor side effects, the other two do not.

We are anxious and ready to begin the new treatment.

It’s definitely nice to see treatment appointments scheduled on the patient portal beginning next week. I should have more info soon, and will update as soon as I do.

We are at LCI now for a few extra labs he needed for trial.

Thank you for your love and support!

Leap Day Update

Happy Leap Day! 🙂

Today was a long day at Levine Cancer

The first appointment consisted of more paperwork for the trial, and he turned in the 24-hour urine test.

This appointment also answered our questions on the PET scan- if Rob gets cleared for the trial (including labs/bone marrow biopsy results)- he will likely not need a second PET scan since he had one recently.

If for some reason he doesn’t meet the criteria on labs, then he will probably need a second one in the future.

Finally, they did a neurocognitive test, and checked his handwriting by having him write a sentence.

The reason for this is because the drugs can cause neurocognitive difficulties. These tests establish a baseline of what his neurocognitive status and his handwriting is now verses how the meds impacts it once he begins treatment. Thankfully, they said side effects are temporary.

Much more to come on this as we learn which arm of the trial he will be going through, and potential side effects. Ya’ll are learning right alongside us, and we are so appreciative of that!❤️

Next up, we had some time for a picnic lunch in the car, and a brief visit in the Keep Pounding lounge. It provided a much needed quiet place to relax in very comfortable chairs.

Next was labs (22 tubes!), and then we returned to the hematology floor for the bone marrow biopsy. I’ll update our blog as labs and biopsy results come in.

For anyone else facing any challenges, Keep Pounding!!

Thank you so, so much for all of your support and love! ❤️

Pre-screening Process Started

Hi everyone,

Thank ya’ll for being here!❤️

The pre-screening scheduling for the clinical trial has started, with many tests being ordered.
The patient portal shows 34 upcoming tests, many of which are labs.

In addition to the 34 tests scheduled, he will have pre-screening tests in cardiology, pulmonary, skeletal imaging, and a PET scan. Since he had the PET scan recently, we don’t know if that will be scheduled before or after the first round of the trial.

24 hour urinalysis test will be done next week, along with a bone marrow biopsy, labs, and an appointment with his hematologist oncologist.

The fatigue has been increasingly worse. We are wondering if his platelets are low, or if it is from the multiple myeloma coming back (one of the symptoms), or both. We look forward to labs next week to see if they can pinpoint anything that would be a cause.

This is the hurry up and wait part, as he goes through the clinical trial pre-screening process. I will keep updating along the way, and hopefully, I can begin writing about the next line of treatment soon.

We appreciate your love and support through this so much! Thank you!!

For anyone else facing challenges, whatever those challenges are, we are here for you too-please don’t forget that! 🙏❤️ 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