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!!❤️❤️❤️❤️

Tuesday, June 4th Update

Hi everyone,

Thank you for your continued encouragement and love! ❤️❤️❤️

Rob had a really good few days this past week!! He was able to walk a few 5ks- which was a huge improvement. 👏👏👏

Rob had labs, an appointment, and infusion today.

They have decreased one of his medications due to it causing a high heart rate when simply sitting. He was alerted to it multiple times (through his watch monitor) the past two weeks after taking the medicine.

This medication is part of the trio of meds he is on since relapse- the standard arm of the clincial trial.

The hopes are that the decrease will help prevent any additional elevated heart rates while still doing everything it needs to with the other two meds in fighting this relapse. He started the lower dose of the med today.

We won’t know today’s myeloma lab results until later this week, and will update here when they come in.

They are scheduling a PET scan to see how the lesions on his ribs are responding to treatment and to see if there have been any other spots emerging.

Rob continues oral chemo nightly at home, and infusion appointments evey other week.

Thank you for all of your love and support!!

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!!🥰❤️

May 8th Update

Hi everyone!

Time to celebrate some wins! 🎉🎉🎉

This morning. Rob was able to get some exercise in for the first time in over a month! He waked 1 mile!!👊👊🎉🎉🎉

He also had no rib pain when doing so. This is HUGE!! 🎉🎉🎉🙏🙏

Also, Rob’s myeloma labs came back, and look good. The lambda light chains (myeloma markers) did show an increase, but they are still in the normal range.

We believe fluctuations that remain in the normal range are just –normal. When they begin to spike routinely (like what happened earlier this year) is the sign of myeloma activity. They are re-checking these in 1 month.

Rob has graduated from having treatment weekly at LCI to going every other week, and he continues the chemotherapy at home nightly.

We are thankful not to have to be at LCI every week. We are incredibly grateful for all they are doing at LCI to help Rob Keep Pounding! 🎉🎉🎉🎉🙏❤️

Thank you for all of your words of encouragement and support!! ❤️❤️❤️❤️

Radiation Complete

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!!!❤️❤️❤️

Radiation Update, May 2

Good morning everyone,

Radiation is going well.

Rob has had 3 sessions this week, with 2 more remaining today and tomorrow. They decreased from 8 to 5 sessions to keep in trial parameters, and they think 5 will do the trick.

Rob is having some relief. The pain is still a constant 3 as before, however, it is not increasing to a 6 or 7 like before when brushing his teeth, getting dressed, or doing basic everyday tasks.

He had pretty bad burning feeling in the middle of the night last night (where they did radiation), and they said he could do lotion but not ice packs. It seemed to help relieve the burning a bit, and I’ll update as the day goes on. As I’m writing this, I’m wondering if he can also do one of those cooling creams to help- we’ll ask today at the radiation session. They have a list of lotions and creams, but I didn’t see the one I’m thinking about on the list. We’ll find out this afternoon.

He felt nauseous yesterday and last night, but stayed ahead of it as they advised with meds.

Next week, we’ll learn how Rob’s myeloma numbers are doing. I’ll post an update as soon as the labs come in. Thank you for helping us keep pounding!!

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! ❤️❤️❤️