Hi everyone,

Rob had a PET scan yesterday, and we got results just a bit ago.  

It read, in part:

“Hypermetabolic expansile lytic lesion right third rib consistent with active myelomatous disease.”

This means myeloma has attacked Rob’s rib.  Rob’s first right rib was eaten away with myeloma the first time.

This also means that in addition to the blood showing myeloma being active (from the 3  lambda light chain spikes I mentioned earlier), it is now active in the bone.

The report also mentioned “lytic and lucent changes within the axial skeleton”–and we’ll get clarification what that means on Monday.

Positive side- there was just one spot noted, verses many the previous time, where he had it all over his body.

We will know more details on Monday, including the next plan of attack.

Thank you so much  for being here and for your support and love!!❤️

 

Hi everyone, 

Rob’s multiple myeloma has come back.  

This type of blood cancer is known to relapse, though knowing that doesn’t make it any easier to hear it when it happens.  

So, we are tackling it Keep Pounding Style, Round 2.  

Here is a breakdown of what we learned today.  

1. Rob’s multiple myeloma lambda chains spiked for the third time in a row, doubling each time.  
2. Rob’s symptoms are consistent with a relapse, though we will know soon through imaging if there is anything myeloma related causing his rib pain, or if it is unrelated. Symptoms which have been ongoing for a while include rib pain, similar to the type pain he had right at diagnoses, where the myeloma ate away the rib, and major, ongoing fatigue.  
3. She said 5 years was an incredible run to get out of transplant. We are grateful for it, without a doubt.  

Here is a breakdown of the trial we are looking at. I will explain it plain terms, and then link to the actual trial for those wanting a more detailed explanation.  

1. The trial is a randomized trial. There is no “placebo” in this trial.  

2. The trail has 3 arms. Think of arms as options (‘options’ is my term, not an official term). 😉 

3. Arm 1 of the trial consists of the drugs: Daratumumab, Pomalidomide, and Dexamethasone (DPd) 

Arm 2 of the trial consists of the drugs: Talquetamab and Daratumumab.  

Arm 3 of the trial consists of the drugs: Talquetamab, Daratumumab, and Pomalidomide 

4. The first arm is the standard treatment for multiple myeloma. If the trial was not taking place, this is a treatment he would do. If Rob does not qualify for this trial (there are other clinical requirements other than just abnormal lambda light chain numbers), option 1 is a good treatment plan, according his hematologist oncologist.   

5. The second and third arms are the actual trial. Right now, the trial is a Phase 3 Clinical Trial. Options 2 and 3 have been approved for a 4^th or 5^th line of treatment. The purpose of this trial is to get full approval to use it for a 2^nd line of treatment after relapse.  
6. For more detailed information on all aspects of the trial, you can visit: https://classic.clinicaltrials.gov/ct2/show/NCT05455320

Rob has an incredible fighting spirit as always. While we both are nervous, we know that in order to stay ahead and fight the cancer, we have to Keep Pounding!  I will give an update after the next labs, chest CT, and PET scan, within the next 2 weeks.  

Finally, I have no idea what is going on with the comment section, as there is a new software with WordPress called JetPack. Unfortunately, not all comments are getting through, and we are getting a ton of spam. To be safe, I am working on setting up a Caring Bridge site, until I figure out a better blog option (or learn how to fix it).  If we do go that route, even if it’s just temporary, I’ll post an update here.  

Thank you for helping us Keep Pounding!! 

Hi everyone

Here is my update from Rob’s appointment this morning.

The two spikes in lambda light chains are “very significant” according to his multiple myeloma specialist. Shw said the lambda chains spiking are the first indicators his multiple myeloma is trying hard to relapse.

Rob’s lambda light chains (the numbers which spiked twice in a row) are the first to show signs of relapse, before abnormalities appear on other multiple myeloma tests (such as the M-Spike lab).

Rob currently has no M-Spike, but 2 signicant lambda light chains spikes.

It was significant enough to discuss the next lines of treatment, while she also acknowledged that the numbers could stabilize where they are.

A clinical trial was discussed as one option, and treatment with another drug was a second option.

By her laying the groundwork for what to expect, we have a plan in place if needed after his next appointment in January.

If there is a 3rd spike, she said we would begin new treatment protocol immediately. They will wait for the next lab appointment in January to confirm or rule out a relapse.

If Rob begins having any bone pain or other symtoms, we are to call ASAP, and they will have him come in before the next appointment.

Rob’s anxiety was noticeable as we were leaving, and how could he it not be? He has had 4 years and 9 months of regular myeloma labs, minus the last two labs.

It is surreal to be talking about possible next lines of treatment.

As surreal as it seems, it is important to stay in the moment, and not be in denial.

It’s important to acknowledge his fear and anxiety about the spikes and hear what his concerns are. If you could have seen his face yesterday, you would have seen the fear written all over his face immediately following the appointment.

Ya’ll know Rob fights this beast with courage, tenacity, and positivity, yet, we know when to acknowledge that things are moving in a different direction, as they are now. It certainly doesn’t mean the numbers won’t go back down, and we hope like heck that they do! 🙂 We just can’t ignore what it’s done thus far.

It is imperative from a mental health and physical health perspective that we not be in denial, but ready to Keep Pounding!

We’ll continue to share the good and the bad, as so many have shared with us on their journey. It helps us not feel so alone, as does your support and love!

Thank you for the calls, texts, and blog messages!

We appreciate the support and love more than words can express in a post.

Ya’ll help us share and process information as it comes in, and listen with kindness and grace. It helps Rob to Keep Pounding!

Thank you, thank you, thank you. ❤️❤️❤️❤️

Hi ‘Keep Pounding Rob’ friends and family!

We are incredibly thankful for the support ya’ll have given us since Rob’s multiple myeloma diagnoses in September 2018, and through his stem cell transplant in 2019. Thank you!!

Rob has continued maintenance chemo for 3 weeks on, 1 week off, since his stem cell transplant.

This treatment had been doing an amazing job at keeping the myeloma numbers in the normal range, and keeping the myeloma cells in his body quiet.

Unfortunately, Rob’s labs have showed the myeloma is progressing. Now, we do not know to what extent. We also do not know if they will wait for another month to test a third time, before talking about new treamtent options. We will know more next week.  

After the first spike in September, his hematologist oncologist said continued spikes in lambda light chains mean the multiple myeloma is progressing.

This week, the second set of labs from this past Monday showed a second darn spike in the lambda light chains.

In addition, his liver level results have spiked as well. They had been high, but are now in the abnormal range. We have no idea if this is related to his multiple myeloma, the medicine he is on for the multiple myeloma, or unrelated.

We will have much more information next week. It is possible they will give it another month to re-test, just in case it returns to normal levels. This is new territory for us, we don’t know what to expect, but we do know we will have a plan in place.

About a year after Rob was diagnosed, we attended a multiple myeloma conference put on by the International Myeloma Foundation (IMF). It was in Charlotte, and attended by the wonderful hematology specialists from Levine Cancer, as well as specialists from other parts of the country.

There is one (of many) helpful points from the conference that sticks out today. They said that in general, it is not a matter of IF multiple myeloma relapses, but WHEN. However, they said when it does relapse, they are prepared and equipped to fight it. And so are we! #KeepPoundingRob 👊👊

Rob thought it would be good to put an update here, since it had (thankfully) been a while since an update was needed. We also learn so much from others who share their journey with multiple myeloma, and he wanted to share his journey as well.

I will update the blog next week when we know more.

Thank you so much for your support and love the past five years!   

A side note for newcomers to multiple myeloma who have found this blog randomly:

First welcome! Please feel free to reach out if you have any questions or need support from the patient side or care partner side of things.

Second, several good sites for connecting with multiple myeloma resources and information include:

myeloma.org

themmrf.org

SmartPatients.com (multiple myeloma section)

For transplant and Car T information:

Bmtinfonet.org (Blood and Marrow Transplant Information Network).

Finally, Keep Pounding!!

Happy 2022 everyone! 🙂

We are coming up on the 3^rd year of Rob’s stem cell transplant anniversary. We could not have made it this far without your support. Thank you!!!

Rob continues treatment for multiple myeloma 3 weeks on, 1 week off. This treatment, called Revlimid, has done a remarkable job at keeping the multiple myeloma at bay.  We are so thankful for it, and for the continued guidance of his extremely knowledgeable hematologist and nurses at LCI.

A few weeks ago, Rob got a port to help with monthly infusions. It was done as an outpatient procedure, and he is so thankful for it. The reason for the port is because his veins were “shot” from everything over the past few years, according to the (most amazing and kind!!) infusion nurses. The port allows for much easier access for labs and monthly infusions at LCI.

Rob was diagnosed with a lung condition called bronchiectasis. This is where the lung’s bronchi are permanently damaged and widened. We are thankful for his wonderful pulmonologist who monitors this condition with lung function tests and CT scans.

Next up is Rob’s annual PET scan and bone marrow biopsy. His multiple myeloma labs are looking great, and hopefully we’ll have great news to report after these upcoming tests as well!

Thank you for reading, and for your continued support and love over the years! Finally, a Rob laugh-I asked him if I should put “Catch up Update” for the title of this post, to which he quickly replied with his joyfully mischievous grin, “Why would you put “Ketchup? Everyone knows what Ketchup is”…

I had an amazing appointment with Dr. Bhutani at Levine Cancer on April 5, 2021. I improved to stringent complete response (sCR) at the 2 year anniversary of my Autologous Stem Cell Transplant.  

Maintenance treatment of Revilmid continues to deepen my response. I will continue taking this 3 weeks on, and one week off, along with monthly IVIG infusions to help restore IGG deficiencies.

Last year during MRD (minimal residual disease) testing, myeloma / malignant cancerous cells appeared at 1 out 100,000 level (10^5).  Now I am MRD negative at that level. 

I continue to have some malignant cells present at 1 out of 1,000,000 (10^6).  I am grateful that I continue to respond to treatment. 

In September of 2017, plasma cells accounted for 54% of the cells in my bone marrow biopsy.  Now I am at 0.3%.  In 2017, multiple myeloma caused a fracture in my left humerus, a rib to be destroyed, and the formation of 6 other lytic lesions.

Through the amazing care of Levine Cancer Institute, I have full use of my left arm. I achieved sCR (stringent complete response) in multiple myeloma at the two year anniversary of my Autologous Stem Cell Transplant. This was the goal when my doctors recommended a transplant.

Each step of the journey, progress was being made.  After my Revilmid, Velcade, and Dexamethsone induction, I had achieved a partial response (PR).  90 days after my stem cell transplant, my response improved to very good partial response (VGPR).

At the one year anniversary of the transplant the response improved to complete response (CR).  Now I am grateful to have reached sCR. This reflects that for me multiple myeloma is a journey with twists and turns. I remember being disappointed that I didn’t achieve a higher response after chemotherapy and the stem cell transplant. This demonstrates that patience and perseverance matter.

Thank you to the wonderful team at Levine Cancer Institue, Dr. Patt and his amazing staff of orthopedic oncologists Dr. Bhuntani, Dr. Usmani, Dr. Atrash, Dr. Voorhes and Dr. Shahid and their amazing clinical nurses, infusion nurses, transplant nurses, and hematology staff.,

Every day amazing progress occurs in the treatment of multiple myeloma. I encourage my fellow multiple myeloma survivors to Keep Pounding! Please know that “No One Fights Alone!” The amazing medical advances in multiple myeloma are delivering Hope!

Thank you, Keep Pounding Rob Team!! We are so thankful for your support during the past two years! From prayers, cards, meals, texts and e-mails, your ongoing encouragement has meant so much!! Thank you!!

Thanks to @WBTVNews, @PaigePauroso, and @CarolineHicksTV for spreading awareness about COVID-19 vaccines, especially to those who are at risk due to illness or disease. Rob was interviewed today after getting his first COVID-19 vaccine. You can see the clip here: https://www.wbtv.com/2021/03/15/it-means-so-much-people-with-high-risk-conditions-discuss-significance-covid-vaccinations/

Masks and vaccines have helped protect Rob since being diagnosed with multiple myeloma. Masks are required on the stem cell transplant floor, and with good reason. Rob lost all of his vaccines he had has a baby after his stem cell transplant. Every single vaccine. As such, masks became a normal way of life for a long time after his stem cell transplant.

We have trusted science and Levine Cancer Institute from day one, and he has been getting re-vaccinated for his childhood vaccines lost from transplant for the past 1 1/2 years.

Today, we trusted science again, and happily got the first does of the COVID-19 vaccine, masks included. 🙂

One of the pictures featured in tonight’s newscast was of Rob just a few days after getting home from transplant. He was home bound for a long time, due to having no immune system. If you know of anyone who has a physical or mental disability, and is not able to travel to a vaccine clinic in Mecklenburg County, you might qualify for a home bound vaccination through the county. You can call 980-314-9400, option 3 for English, and Option 8 for Spanish. Or, visit https://www.mecknc.gov/covid-19/pages/vaccine.aspx

Thank you for being a part of the Keep Pounding Team!!

@LevineCancer @WBTVNews @PaigePauroso, @CarolineHicksTV