Hi everyone-
We just Rob’s Lambda light chains (myeloma markers) back and they have decreased by 98.96%!! 👏👏👏👏🎉🎉🎉
It is the LOWEST it has been since his multiple myeloma diagnoses!!
We are so happy and wanted to share!
I’ll update this post with M-Spike results when they come in.Â
Thank you for being here!!❤️❤️❤️❤️
Hi everyone,
Rob completed 5 days in a row of radiation yesterday like a champ! 👊👊❤️
It has helped decrease the rib pain. He says he can tie his shoes and brush his teeth without the pain increasing to a 6 or 7. It also does not increase when he walks right now.
The pain still there at the level where it was before it began increasing in the intensity (a “3”), BUT he has noticed a definite improvement.
We are so grateful for the radiation oncologist, radiation techs, nurses, and everyone else in that department who helped him this past week!
Side effects are hiting hard. Rob has pretty bad fatigue. The lotion has helped with the burning. We didn’t ask about the cooling lotion, because the Lubiderm lotion has been doing the trick.
Next week, Rob will have a busy day back at LCI. He’ll have labs, appointment, then we leave LCI to drive just a few blocks over to the CVS Specialty Pharmacy, where he picks up oral chemo. Then, back to LCI for pre-meds, wait an hour, and then he gets the Daratumumab. He’ll begin the next oral chemo that night, for 3 weeks on, one week off.
The next cycle schedule will change a bit, and Rob will be at LCI every other week for treatment instead of weekly- a welcome reprieve.🙏
We will also learn if Rob’s treatment is continuing to work next week, as they are drawing myeloma labs. They are also going to be scheduling a bone marrow biopsy in May.
Thank you for helping us keep pounding, your support, and your tips!
To anyone else facing challenges as well, Keep Pounding!!!❤️❤️❤️
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).Â
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! ❤️❤️❤️
Hi everyone,
I’m breaking up this lengthy update into sections for easier writing and reading.
Rib Pain Concerns
Yesterday afternoon, Rob’s hematologist oncologist called. She expressed concerns about Rob’s ribs based on his symtoms (intense, ongoing rib pain) and x-ray results.
She says in her opinion, it looks like the multiple myeloma is affecting a new rib, rib 11, and also rib 2.
The report specifically said:
“Mild cortical expansion of the right posterior eleventh rib and second rib which could be seen in the setting of multiple myeloma versus superimposition of structures or remote fractures.”
She said while the 11th rib didn’t show a hole like it does in the other rib (the one we saw on PET scan in January), the expansion is suspicious for myeloma activity.
She said she wants to order a more detailed scan, but does want to wait and see what the radiologist wants to order as well, so we aren’t doubling up on scans.
The pain is bad, and he can’t hold a tumbler without being in pain. It hurts when he’s resting or walking, and he hasn’t been able to walk for exercise as a result. It has gotten worse over the past 7 weeks.
It is an odd feeling to see the multiple myeloma numbers that came back a few weeks ago look good, yet the pain has continued to increase, and now the abnormal x-ray results.
The purpose of the upcoming radiation consult is to see if radiation can help ease the pain, and learn anything else we can/need to learn about it for future treatment- we don’t know anything about radiation.
Treatment Update
Today, Rob’s treatment at LCI went well.
His weekly treatment continues, consisting of labs, waiting about 45 minutes-1 hour for lab results, then premeds, waiting another hour for premeds to do their thing, then he gets the Daratumumab. He also takes chemo orally at home every night- 3 weeks on, 1 week off.
Up Next
Please keep Rob in your thoughts for this upcoming radiation consult and scans for answers and relief for his rib pain.
We aren’t fully understanding everything yet. The radiation consult is this week, and I’ll update once we get back.
Thank you for being here and for all of your love and support!!
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:
Continue reading “MMRF Patient Summit 8/1/20”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)Â
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
Keep Pounding Rob! 