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!!🥰❤️

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!!!❤️❤️❤️

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!!

April 21 Update

Hi everyone,

An update and some thoughts to share.

Rob’s fatigue and rib pain have continued. On the plus side, he has found a little relief with a lidocaine patch on the ribs.

We learned some interesting things last week regarding the radiation consult we have coming up next week. A quick recap- the radiation consult is scheduled to see if the radiation oncology team think that radiation will help ease his intense, ongoing rib pain which has been worsening.

This is a standard care of treatment for many myeloma patients when warranted by the radiation oncologist, in order to help relieve bone pain caused by multiple myeloma.

Unfortunately, we learned last week that it isn’t “allowed” for the next section of the trial. The consult is still scheduled- this is on the trial side.

Rob is in the standard arm for this trial, which we believed meant 100 percent identical to what he would have if he wasn’t on the trial.

Well, that isn’t the case in terms of adding additional therapies to the standard care ( though it is totally normal treatment options for patients not in the trial who are on the same drug combo as Rob is).

I remember hearing about these additional therapies (like radiation) at the International Myeloma Foundation conference we attended in Charlotte about 5 years ago. They also talk about them regularly at the multiple myeloma community on Smart Patients (online resource). This isn’t new…it’s standard.

It hurts Rob to hold a tumbler.
His myeloma #’s coming down was/is amazing, and this pain shouldn’t be happening.

Also last week, Rob met with Supportive Oncology department (formerly known as Palliaitve Care department). They were amazing as usual in their knowledge and helpfulness.

She recommended a consult with their (Supportive Oncology Department) oncologist, who specializes in treating musculoskeletal pain in cancer patients in the form of nerve blocks. She wasn’t sure if it will work or be a possibility, but wanted to at least get a consult in (this is in addition to the radiation consult).

Well, we ran this by the trial team, and they have to see if it’s allowed. They weren’t sure and they will get back to us.

Again- both radiation and treatment by the Supportive Oncology doctor in the form of nerve blocks are completely normal treatments used in MM.

I know and appreciate the importance of clinical trials. We appreciate everyone who helps make those happen, and they are lucky to have such dedicated team members doing so- no doubt about that. 👍

Our frustration is how these restrictions impact Rob’s options for pain relief.

After seeing 3 options not available to him to help with pain due to the trial, something has to give. (The concern of tyelonal may impact bilirubin, which will delay treatment; radiation not allowed; pain block may not be allowed as well). These are 3 regular, standard options which could provide relief.

Thank you for listening, and thank you so much for your continued support and love!

I’ll be back this coming week with an update.

Side note: Newcomers to multiple myeloma who have found this blog: The Smart Patients community I mentioned is one of the best online resources we have found for multiple myeloma education and support. I’ve been a member there since 2018. Come join us for support and knowledge.

https://www.smartpatients.com/communities/multiple-myeloma

Great News!!!

First- AMAZING news!! Rob’s lambda light chain markers are NORMAL!!

This is after 5 weeks of treatment, which continues for cycle 2. Since Rob has lambda light chain myeloma (vs kappa light chain myeloma), these markers let us know how the multiple myeloma is responding to treatment.

We are absolutely elated by this!!

He began cycle 2 this week. This will be for 4 weeks in a row. The 3rd cycle will be a bit more spaced out, and I’ll update about that closer to time.

To clarify- this treatment protocol is what he will remain on until the next relapse.

This is what is unique and challenging about multiple myeloma, in that it continues to evolve, becoming resistant to drugs like it did to the last treatment he was on. As a result, he won’t be on this for “just a few more cycles.”

Since it is thankfully working, he will be on it until the next relapse. We are extremely grateful for the number of treatment options available now vs in the past!

Other updates:

They are scheduling a consultation with the radiation oncology team to see about doing radiation on his ribs.

His pain has increased there big time, and is now constant.

An x-ray done this week showed 2 areas of concern, which we think are consistent with multiple myeloma, based on the lab report indicating as such.

1 rib we knew about (rib 2), but the report mentioned rib 11, which is new.

They will be closely monitoring these areas with imaging and testing as Rob continues his treatment.

Another result that came in last night was high protein from the 24-hour urinalysis. It was high last month, and has increased again. This will also be closely watched.

Thankfully, his other labs look amazing!!👏👏👏👏

We want to share the entire picture for those also going through the process, and to keep everyone on the same page. 🙂

There is so much we are learning about being in a clincial trial. We will work on that for a future post to share with anyone else considering a trial.

A HUGE thank you to everyone who has been so incredibly supportive through this!! We are beyond fortunate to have such an incredible Keep Pounding team on our side.

Thank you!!🙏❤️

For anyone else facing challenges, Keep Pounding!!👊👊❤️❤️❤️