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! ❤️❤️❤️

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! ❤️

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! ❤️❤️❤️

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

Week 3 update

Hi everyone,

Rob has his 3rd treatment at LCI this past week.

Today is rough, as he has increased rib pain (where the myeloma has caused rib damage) and fatigue. Please pray for relief on both of those.

His voice is still weak, but not as bad as week one.

The fatigue is bad. This was bad before relpase, and thought to be myeloma related. However, this treatment protocol can also cause fatigue. Whatever the cause, it is definitely hitting harder right now.

His heart rate is high again, but we are noticing it improves a few days after taking the Dexamethasone, which is a relief. We think the increased heart rate is from the Dexamethasone verses the other two drugs, and will get his doctor’s input. We are just thankful it’s not constant like before. 👍

If this treatment works in kicking multiple myeloma’s behind, Rob’s treatment plan will eventually space out a bit after 3 full cycles (so around early June). More on that later.

Update on the compound to help neuropathy: it has provided some relief of the neuropathy! He has used it at night, and can tell a difference. He can use it up to 3 times a day.

For some positives, Rob has been walking like a champ on the days he is up to it! 👊👊👍👍 We did find a water backpack to use, which helps the dry throat/mouth, and he doesn’t have to worry about carrying a heavy water bottle or thermos.

I’ll put all of the things we have found helping so far in one resource post soon.

Thank you for your continued support and love!!

For anyone else facing health challenges, 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!❤️❤️❤️