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!!👊👊❤️❤️❤️

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! ❤️

Pre-screening Process Started

Hi everyone,

Thank ya’ll for being here!❤️

The pre-screening scheduling for the clinical trial has started, with many tests being ordered.
The patient portal shows 34 upcoming tests, many of which are labs.

In addition to the 34 tests scheduled, he will have pre-screening tests in cardiology, pulmonary, skeletal imaging, and a PET scan. Since he had the PET scan recently, we don’t know if that will be scheduled before or after the first round of the trial.

24 hour urinalysis test will be done next week, along with a bone marrow biopsy, labs, and an appointment with his hematologist oncologist.

The fatigue has been increasingly worse. We are wondering if his platelets are low, or if it is from the multiple myeloma coming back (one of the symptoms), or both. We look forward to labs next week to see if they can pinpoint anything that would be a cause.

This is the hurry up and wait part, as he goes through the clinical trial pre-screening process. I will keep updating along the way, and hopefully, I can begin writing about the next line of treatment soon.

We appreciate your love and support through this so much! Thank you!!

For anyone else facing challenges, whatever those challenges are, we are here for you too-please don’t forget that! 🙏❤️ Keep Pounding!!❤️👊