Tag: Multiple Myeloma Reseach Foundation

Sunday, July 7th Update

Hi everyone,

Thank you for the continued prayers and support!

Rob’s PET scan results are really great!! It showed a decrease in the size of the myeloma lesions, and even had the words “nearly resolved”🎉🎉🎉!!!

He is also having no more pain in his ribs!! His myeloma labs came back really good as well, in fact, they remained exactly where they were last month, and we are thrilled!!

Once the chart is updated in the portal, I’ll copy and past a pic ya’ll can have a visual of how well he is doing. It really helps to see the numbers in a graph/chart form, and shows how well his treatment is working.


We are thrilled about his progress so far! He has a bone marrow biopsy coming up in a few weeks.

Thanks again for helping Rob to Keep Pounding! We love ya’ll and appreciate your support! ❤️❤️❤️

98.96% WIN!!!

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. 

Thank you for being here!!❤️❤️❤️❤️

Sunday, 5/26 Update

Hi everyone,

We are seeing some improvement!

Thank you for your words of encouragement!!

His appetite is improving. He is still fatigued and very pale. I’ve noticed some breathlessness (like getting winded more easily), but oxygen is  normal, thankfully.

We are keeping his doctor in the loop on everything and hoping it was just a hump to get over.

Two of his labs from infusion last week (non-myeloma labs, just regular infusion related labs) were elevated more than normal and marked as high.  We’ll get more details on whether those are playing a role in this.

The next myeloma labs will be the week after next. They will also be scheduling scans of his ribs to check on his rib lesions. Finally, they will be scheduling a bone marrow biopsy as well.

Please continue to pray for his energy to return, and the paleness to go away.  I feel like we made progress this afternoon and evening, and hope everything else falls back into place.

Thank you for your prayers, support, and love! ❤️

Friday, 5/24 update

Hi everyone,

A quick update to share. Rob’s had a rough few days. Bad fatigue (worse than usual), stomach problems, and today,  he is very pale.

He’s been able to do liquids and stay hydrated, but he is definitely “dragging”- in his words.

Please keep him in your prayers for his stomach to feel better, color to return, appetite to come back, and just as important – his joyfully mischievous ways we all know and love to return quickly.

Thank you for being here! ❤️

May 16th Update

Hi everyone,

Rob has been dealing with severe  hip pain. Thankfully,  he has been able to get some  walking back in after not being able to due to the pain. We are hopeful and hoping it is nerve/muscular related vs bone pain caused by multiple myeloma.

His rib pain where the plasmacytoma is has subsided greatly after the radiation! We’ll get this hip pain under control, and he’ll be back to making even more strides again soon. 👊👊👊

Lambda and Kappa Light Chains

I wanted to elaborate on  lab results a bit, but didn’t want to include too much in the last post. I’m trying to break up the information so it’s easier to digest.

In multiple myeloma, there is what is known as Kappa light chain myeloma and Lambda light chain myeloma.

Rob has Lambda light chain myeloma. As such, we look for the Lambda light chain results on his myeloma labs to see how the multiple myeloma is responding to treatment. 

The past 2 months, while the Lambda light chains have been normal, his tests identified a Kappa protein.

At Rob’s last appointment, we learned that this treatment he is on can cause a Kappa protein to be identified. If this is the cause, it usually stays small and quiet.

They said there is a specific lab test they will do to see if the Kappa protein showing up on the past 2 labs is simply caused by the new treatment, verses caused by the multiple myeloma.

If it is not caused from the new treatment, we’ll discuss what this means with his hematologist oncologist. This  Kappa protein is new to us, and we are appreciative of all we are learning from everyone at LCI.

Depending on that result, plus upcoming labs, will help determine next step as far as bone marrow biopsy. For example, if the Kappa light chain is found to be caused by the medication, and his lambda chains remain normal, then we will proceed with a bone marrow biopsy.

The purpose of the bone marrow biopsy is to see how many multiple myeloma cells are still present.  More on the bone marrow biopsy and the significance of this test in a future post.

Up Next: 

Rob continues oral chemo at home, and is back at LCI next week for treatment. The next  labs are in 2 weeks.


Thanks for being here!!🥰❤️

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! ❤️❤️❤️

Tuesday, April 23 Update

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!!

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” →