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!!

Week Two Update

Thank you so much, NB family and JS family, for this amazing painting and encouraging words!!❤️❤️❤️

Hi everyone,

It has been a week of adjustments, and Rob continues to Keep Pounding despite the challenges.

He has had 2 treatments at the clinic (the Daratumumab and Dexamethasone, along with pre-meds before) last week and yesterday. He takes the Pomalidomine every night at home.

I’m going to explain the side effects and what we are doing to try and help them.

1. Excessive dry mouth and throat, which has led to trouble talking longer than a few sentences without coughing, sounding hoarse, or having to drink lots of water.

2. Increased heart rate

3. Increase neuropathy pain

To help with this, here is what we are trying thus far:

For the dry mouth and throat/hoarse voice: We are using humidifiers, as I read about this from other cancer patients experiencing similar dry mouth/thorat/hoarseness symtoms. Rob thinks this is helping.

He has a dry mouth spray, and dry mouth rinse he is trying, which I got yesterday after talking with the PA and clincial trial research nurse. He said the spray works for about 45 minutes. We are trying a different spray when it arrives tomorrow.

The ones he has now are small bottles, making it easy to take with him. I’ll update on how that is working soon, in case it can help anyone else as well.

For the increased heart rate, they are monitoring it carefully. Thankfully, today, the day after treatment, his resting heart rate- while still high–is lower than last weeks resting heart rate the day following treatment, which is huge! We hope it continues to improve.

For the neuropathy, we are increasing his visits to acupuncture at the Supportive Oncology department at LCI. This has helped in the past, so they think increasing it will help again.

Along the neuropathy lines, Supportive Oncology recommended a compound cream. We have to run it by the trial nurse (pretty sure it is ok, but when in a trial, you run everything by them).

They said that the pharmacy gives you paperwork to file for insurance for this compound (they don’t file). I’m mentioning this in case anyone else dealing with neuropathy comes across this as an option. I’ll update as we learn more. I have heard great things about compounds for neuropathy from several people, and we hope it helps Rob as well.

If anyone reading has a tip for helping hoarseness/dry mouth and/or neuropathy pain, please reach out to me (Brandii), or leave a comment. Thank you!

Rob is handling these side effects with determination and grace. His attitude, spirit, and drive are simply amazing.

Thank you for your love and support!!

For anyone else facing 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!❤️❤️❤️

Trial starting next week!

Rob is scheduled to begin the clinical trial next week, at least according to the patient portal (pending final trial approval).

However, we have no idea which arm of the trial he is scheduled for, but hope to know that soon. 2 of 3 arms requires hospitalization to monitor side effects, the other two do not.

We are anxious and ready to begin the new treatment.

It’s definitely nice to see treatment appointments scheduled on the patient portal beginning next week. I should have more info soon, and will update as soon as I do.

We are at LCI now for a few extra labs he needed for trial.

Thank you for your love and support!

Lambda Light Chain Results

We learned Rob’s multiple myeloma (the lambda light chains lab result) continued to spike, which we expected.

We also learned that his 24 hour urine test showed the lambda light chains present. We don’t know the significance of this, but when we do, I’ll update here.

Now we are just waiting on the bone marrow biopsy results. No matter what it shows, he will still be going in the clincial trial- I believe they just have to wait on the result before starting. If I am wrong on that I’ll correct that info.

The pics below are screenshots from the patient protal. They provide visuals of Rob’s lambda light chains. These are the light chains that indicate myeloma is back.

It’s important to note that some with multiple myeloma may have kappa light chain myeloma, where they would be more concerned with kappa light chains. Since Rob has lambda light chain multiple myeloma, we are concerned with his lambda light chains.

To help visialize, I’ve added two screen shots from the patient portal, which show what his lambda light chains have done the past few months.

Chart 1: You can see that the middle row, “Free lambda light chains” reads 131.82, far from the normal range of 5.71-26.3.

Chart 2: Starting at the bottom, November 2023, you can see how much and how fast the lamnda light chains have jumped.

We will update you when we have more information to share about the expected start date of the clinical trial (probably within 1-2 weeks). Once we know which arm of the trial he is in, I can provide more information on that.

Thank you so very much for being here! ❤️❤️❤️❤️

Leap Day Update

Happy Leap Day! 🙂

Today was a long day at Levine Cancer

The first appointment consisted of more paperwork for the trial, and he turned in the 24-hour urine test.

This appointment also answered our questions on the PET scan- if Rob gets cleared for the trial (including labs/bone marrow biopsy results)- he will likely not need a second PET scan since he had one recently.

If for some reason he doesn’t meet the criteria on labs, then he will probably need a second one in the future.

Finally, they did a neurocognitive test, and checked his handwriting by having him write a sentence.

The reason for this is because the drugs can cause neurocognitive difficulties. These tests establish a baseline of what his neurocognitive status and his handwriting is now verses how the meds impacts it once he begins treatment. Thankfully, they said side effects are temporary.

Much more to come on this as we learn which arm of the trial he will be going through, and potential side effects. Ya’ll are learning right alongside us, and we are so appreciative of that!❤️

Next up, we had some time for a picnic lunch in the car, and a brief visit in the Keep Pounding lounge. It provided a much needed quiet place to relax in very comfortable chairs.

Next was labs (22 tubes!), and then we returned to the hematology floor for the bone marrow biopsy. I’ll update our blog as labs and biopsy results come in.

For anyone else facing any challenges, Keep Pounding!!

Thank you so, so much for all of your support and love! ❤️