Riding the Wave - Multiple Myeloma

03/02/2026

We know these stories. Either from our own experience or listening to others. It’s rare that a doctor diagnoses a patient very early with MM. Especially if they are outside the typical patient demographics. My own husband complained for over a year of symptoms and the doctor didn’t think much of his symptoms or dig further. He had a bone event that sent him into a small town ER.

https://people.com/mom-diagnosed-with-incurable-cancer-after-doc-dismissed-symptoms-11882303?fbclid=IwRlRTSAPvBXVleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEeLRlqXLlr_RHJ8Gpe2DVGXCErlaZVMJBkbE0-ilecH3pBlonFDERwS28dCos_aem_P827tuhrEYRn7CgvQsUscg

Shortly after giving birth to her second daughter, Corinne Torney started experiencing symptoms that her doctor dismissed as postpartum issues. After a second opinion, the Florida teacher was diagnosed with an incurable blood cancer.

02/01/2026

In this flu season here is another thing I’ve been using for about 5 years. I got in it when it was still being developed. It is now available on Amazon.

Kitchen sponges! A new sponge after its first use starts building up bacteria. This easy gadget with its very affordable solution that you refresh weekly (I do it on Sundays when we put out the trash) will keep your sponges looking and feeling like new for up to 6 months!!! I usually have to get a new one because the scrubber is worn out but the sponge itself still looks, feels, and smells new.

While I use the sanitize cycle on my dishwasher, there are still things that require handwashing. I use to worry about this for Dave and was thrilled when this product came out. I’ve even packed it for our long stays in Little Rock where I’m in a Goodness Village Apartment.

When I first posted about it years ago, peeps were having trouble getting it. They are readily available now.

The world's first sponge holder that stores and cleans your sponge between uses. Using patented technology and a plant-based formula.

02/01/2026

As the fear mongering, yet informative news stories are reporting “Super Flu” cases on the rise, the worry and panic can set in for us in the cancer realm.

The flu shots are very dicey for immunocompromised as they can’t make antibodies to be “effective.” That they may lessen symptoms is a theory and a hope but has no science to validate the claim. So whether you choose to get it or not, these are the precautions we take.

The best protective measures we have taken over these many years is to take our vitamin D (10,000 iu)and other basic vitamins. Wash hands whenever we come back from being out in the world. Monthly IVIG if your insurance will cover it. Our doc made a special plea for us and they have approved for 2 years now. And finally the big game changer is a product that’s affordable called Nozin. Respiratory viruses enter thru the nasal passages where they replicate before moving into the body further. Nozin is used by medical personnel daily in infectious disease wards. It protects and kills viruses at the door so to speak. It’s an easy application. It has made a tremendous difference for Dave and we all use it to protect ourselves and him.

They have handy individual ampules to keep on had when you are out and about or in travel (more expensive). But the little bottle with a q-tip is what we rely on. I order directly from the company and they are quick and free shipping. We typically order 3 or 4 at a time so we have them for the whole family.

TIP: Dave uses it everytime he heads into the hospital for treatment as most of his viruses come from there. (He works from home so is rarely overexposed.)

Nozin® Nasal Sanitizer® antiseptic helps reduce the risk of infection, is clinically proven to reduce nasal bacteria, and is used by hospitals for infection control.

20/12/2025

The therapy combo Dave was recently denied.

Treatment options for relapsed and refractory multiple myeloma (RRMM) are evolving rapidly. In this presentation, Rahul Banerjee, MD, FACP, provides...

20/12/2025

Thank you Health Tree for providing updates from ASH.

T-cell exhaustion remains a major challenge in bispecific antibody (BsAb) therapy for multiple myeloma, limiting durability of response and long-term disease...

13/12/2025

Well, after 17+ years we have finally encountered our first major insurance coverage issue. So I’m not complaining about them at all. However, the denial of Dave’s new protocol and dealing with two hospitals and our insurance, all in different time zones, has proved extremely challenging. But mostly it’s the inability to have two-way communication in a timely manner. Add to that, the lack of understanding from our local hospital on how best to proceed. I won’t get into all the details in this post, but suffice to say, it’s been very frustrating for me. The barriers to communication set in stone at our local and our insurance company feels very oppressive. I’ve been stuck home and tied to my phone waiting for them to return my call.

My daughter’s suggestion was to change my voicemail to “If this is A or B, call me back bitches!” 😝

Hopefully it will sort out soon one way or the other and we can get on with it.

Arkansas has been stellar as they always are. It’s our local group and our insurance that makes talking to someone timely very hard. It’s designed that way on purpose. But our local is the worst by far and has done the most damage to this whole appeal process. I know that Arkansas has Plan B, but they wisely want this to play out before we introduce anything else into the mix.

It reminds me of our early days when negotiating medical and insurance was unknown territory for us and we were frustrated and anxious at every turn.

The silver lining in this latest fiasco, is Dave and I are very seasoned now, and know that staying calm, while remaining diligent in our efforts is the best course for us. There is what we have control over and what we simply don’t. In times like this you just have to find those who care about you and your situation and encourage them to do more. Keep your cool and your humor, while letting them know you appreciate them and their efforts.

28/11/2025

Happy Thanksgiving from our fam to yours! We had a thankful Thanksgiving. Lori, Dave, Angelica, and Savannah!

07/11/2025

Just to follow up, Dave’s biopsy came back inconclusive. Sigh. So we will start the new protocol and hope for the best. We head back to LR in January to see how things are going. I hope Dave can manage the side effects from a Car T (currently on), the Dara (immunitherapy), and the Pomalyst (oral chemo). It’s a lot and honestly, and it’s amazing after all these years he has managed to not have to be on a “triplet” therapy.

(Little Savannah rearranged Dave’s dice on his make shift craps table. She was quite pleased with her “Dice Wall!”)

20/10/2025

I belong to a Military Brat group. And they were all chiming in about BRAT, and where it originated and what it means. Many think it’s the regular definition and derogatory, but the theory is it’s actually an acronym, which has a bit of a derogatory humor. Anyway, I searched my old posts and found it and shared.

It gave me some solace in our new health challenge with Dave.

A Caregiver's Inspirational Journey Through Cancer

19/10/2025

We are finally home after being away over two weeks. First Vegas where Dave attended his second craps event. He had a ball! He set new personal winnings records. And little oh me had a winning trip as well. I even sidled up to the craps table next to him and placed my beginner bets of 6&8 on the table and won over $200.

Then we were off to Little Rock for his ckup. We suspected it wouldn’t be an “all looks good” visit. And it wasn’t. Sigh. We’ve been here so many times before. Over the 17+ years Dave has migrated from low risk, to non secretory, to high risk relapsed/refractory. He’s been on every line of therapy that has been available. I mistakenly thought we had some new ones but they are still in trial. Anyway, he was struggling with how he has such low myeloma in his bone marrow, none in his protein counts, is MRD negative, but has active disease and new lesions. Well, that’s why we go to UAMS. They are the best myeloma hunters there are. It all showed up in his scans. So we extended our stay to do a biopsy that will be sent off for genetic sequencing to see exactly how is myeloma is presenting. In the meantime we are adding Dara and Pomalyst to his regimen. He’s been on both before. Over many years they have discovered that they can be helpful again in combinations. All of this however, is if his MM is indeed presenting in a particular way. If not, it won’t be helpful. So in about 3 weeks we will telemedicine with our doc to discuss the results of the testing and go from there.

Admittedly these are the times where managing my worries are vital for me, Dave, and our family.

While we were enroute to Little Rock we learned that Dave’s beautiful cousin Valerie passed away unexpectedly from a brain aneurysm. She was 66. We of course we were stuck in Arkansas, but our amazing daughter was on a work trip in NYC, so she rearranged her trip home to train up to New Rochelle and represent us all at the memorial. We are all incredibly sad by her passing. She was a gem. Beautiful and charismatic. She will be so missed. (The photo is one of my favorites from our wedding. Dave’s father, Sal, his sister, Dave’s Aunt Millie, her daughters, Diana and Valerie. Millie is 92 and the only one still living. She is understandably crushed to lose Valerie so unexpectedly. We all are.)

14/10/2025

He was such a stable voice in our world with answering our questions each week for years. God’s Speed!

It is with great sadness that the International Myeloma Foundation (IMF) shares the news of the death of Dr. Brian G.M. Durie, co-founder of the organization. Read the press release: https://mmsm.link/4q95XLn

13/10/2025

A soothing outdoor garden was perfect today while I waited for Dave. It was a long day of testing. Blood work, bone density, bone marrow, PET scan. (MRI tomorrow.) But we are done for the day and headed for some grub for Dave. He hasn’t eaten since last night as both the bone marrow and PET require no food.