Riding the Wave - Multiple Myeloma

I have so been enjoying this sometimes silly and sometimes serious program (4 seasons) at Prime. I was sad at times thinking about Treat Williams untimely death last year.

The show is Everwood.

Everwood (TV Series 2002–2006) ⭐ 7.5 | Drama 1h | TV-PG

Update: This is working really well. We are almost two months without any new viruses to manage. A BIG change for us. Dave is on board and self administers if he’s going out, to blood draws, to infusion, to the doctor’s office. I tell him if Savannah has any sniffles and he swabs. I’m thinking we have a game changer for us in utilizing this non invasive product.

Viruses enter primarily thru the nasal passages. They sit there for a day or so replicating and then they move into the throat and lungs. This product kills and it protects for up to 24 hrs viruses that find their way into your nose. It’s easy to administer. They also have more expensive ambules that we can use for travel situations. This a product that is often used in surgical settings and ICUs.

Anyway, if you at experiencing catching a lot of whatever is circulating, consider this to help prevent you from getting sick. It’s way more efficacious than a mask.

And Dave’s local hospital has reinstated full Covid protocols last week!!! Believe it or not, that’s usually where he gets his viruses.

Nozin® Nasal Sanitizer® 12mL Bottle - Nozin® Nasal Sanitizer® Antiseptic Nozin® Nasal Sanitizer® antiseptic in a 12 mL bottle with 20 starter cotton swabs. Nozin® Nasal Sanitizer® is an over-the-counter (OTC) alcohol-based topical antiseptic product with demonstrated broad spectrum efficacy. Nozin® Nasal Sanitizer® Nozaseptin® formula combines ethanol with antioxi...

HealthTree for Multiple Myeloma Explore a promising new drug combo of Mezi, TAZ, and Dex for relapsed/refractory multiple myeloma, showing strong efficacy in early trials.

Blood cancers are tough. As we know. You can’t cut it out or radiate it. It’s in your blood and bone marrow. Only childhood leukemia has a 95% cure rate and thank god for that. We can extend our life these days which can be very meaningful to a family.

Did you know it's nearly ? Blood cancer accounts for almost 10% of cancer cases in the U.S. each year. Will you give to the IMF today to support us on our path to find a cure for myeloma? https://mmsm.link/3ynouh7

# BloodCancerAwareness

Your T cells are part of the body's extensive immune system, designed to find and attack a host of diseases, including viruses, bacterial infections, and cancer. But what happens when your T cells become too tired to fight? And why does that happen? Read more: https://healthtree.org/myeloma/community/articles/t-cell-multiple-myeloma?utm_source=social+media&utm_medium=facebook&utm_campaign=article&utm_content=general

Yesterday was Dave’s birthday. We went to Kobe’s, a Habachi Steakhouse. We had a lovely time and everyone was charmed by Savannah as she exclaimed with excitement when the fire happens on the cooking griddle.

Dave has lost a lot of weight rapidly, but seems to have stabilized though he looks frail to me. He still can’t taste much of his food but he is eating and drinking, so all is well. He mostly lost weight when he couldn’t eat because his throat was on fire during one of us illnesses. We seem to have those under control for the moment. I ordered more Nozin to use when he goes out and is exposed to the world. And this time he’s being very compliant. It’s so much easier to try and prevent him from getting sick than getting him well. He often remembers on his own and if not a very small nudge on my part and he gets to it. He’s also getting monthly IVIG to boost his immune system. We got approved by our insurance to do it even if his immune system isn’t bottomed out. They have very low numbers before you can get it and we were able to get them to not hold him to that low threshold, with the help of our doctor. So between those two changes we are hoping we can keep the viruses at bay.

The two of us are supposed to head up to Tahoe Labor Day for a couple of days. I’ve really missed our trips up there. It’s been quite awhile. I’m glad he feels well enough to go.

💕

Neutrophils in Myeloma Neutrophils are the most common form of white blood cells and key players against infections. What is the impact of having low or high levels of neutrophils?

We had the privilege of interviewing myeloma specialist Dr. Luciano Costa from the University of Alabama, Birmingham, about his presentation at ASCO 2024. He shared important updates from the CARTITUDE-4 trial , which is the study that supported the approval of ciltacabtagene autoleucel Learn more: https://healthtree.org/myeloma/community/articles/cartitude4-myeloma-updates-2024?utm_source=social+media&utm_medium=facebook&utm_campaign=article&utm_content=general

Wonderful accolade for UAMS Myeloma Center and UAMS - University of Arkansas for Medical Sciences. CONGRATULATIONS!

UAMS Designated a 2024-2025 Best Hospital; Rated High-Performing in Nine Areas - UAMS News U.S. News & World Report has named the University of Arkansas for Medical Sciences (UAMS) as a 2024-2025 Best Hospital. In the magazine’s annual Best Hospitals edition, released today, UAMS was named Best Hospital in the Little Rock metropolitan area, in a tie with Baptist Health Medical Center. U...

Dave and I with Kim Burkett, director extraordinaire of Goodness Village Little Rock. She’s amazing and so dedicated to providing families with safe and fully functional spaces during your care in Little Rock.

Wow! Got some good news today. If you may recall, I learned from our team in Arkansas (UAMS) that the American Cancer Society had changed its guidelines regarding IVIG (an immune boosting blood product). That they recommended it be used routinely every month and not just if your numbers bottom out. The position is that keeping you from getting sick is less costly than you getting sick because your immune system is low when supportive measures can be helpful. I can attest to that. It’s very arduous trying to get Dave well vs keep him from contracting every virus around. Having said that, our doc also informed us that just because ACS recommends it doesn’t mean the insurance companies will implement it.

After Dave got parainfluenza #3 after months and months of other viruses and chronic coughing, I contacted our Nurse at our insurance company. I asked her if we could get monthly IVIG for Dave regardless of his ANC (Absolute Neutrophils) number? We went over what had been occurring and how difficult things had been. She recommended our doc in Arkansas make the request and then it would get reviewed and approved or denied. We took this back to our team in Arkansas and made our request of him to write a letter on our behalf as the directing physician.

He did. And today we got an official approval letter for at least the rest of this year for Dave to receive it monthly without the low ANC requirement. I don’t know what happens after January, but it would be fair that they would want to review everything again and see if it gave the desired results. 🤞

Anyway, Dave sweetly brought me the letter, “remember you sent a message and had a phone call with our nurse at our insurance company? Well, look at this. You got it done!” 💕

Sometimes things go your way with attention and effort. With many people involved and a chance conversation with our doctor. I would have never known the guidelines had changed had he not mentioned it. And his further sharing the obstacles that still remained. Taking the time and effort to ask for guidance from our insurance insider, and going from there. Who knows, if it makes a significant difference for Dave perhaps they will approve it broadly for MM patients as ACS has recommended. Or even at some point in an MM patients treatment journey when warranted.

So if you or your patient is getting sick a lot and they are holding you receiving IVIG to a low ANC marker, ask your treating physician to make the request based on your circumstances. We are lucky going to a researching facility that our doctor has a large staff of APN’s who take it on for him and for us. 👊🏻

(This was from our whale watching excursion in January in Maui with our daughter and her husband.)

Our primary referred Dave to an ENT for potential sinus surgery. I was not happy about the prospect. But his chronic nasal drip and coughing with little relief has been hard on him. Anyway it was a pleasant encounter and I liked very much how this doc cut thru all the noise and processed thru it all without the bias from the view of others, while carefully listening and absorbing it all. His assessment is it is not necessary to do surgery. His head x-ray showed nothing troubling. It’s likely not allergies or chemo side effects. But “chronic rhinitis at its source by using low-power energy to disrupt the overactive nasal nerves in overdrive,” He said it can happen just as part of the aging process. He prescribed Dave a nasal spray to try for a month and asked him to keep him informed thru mychart on if it’s working or not. He was very thorough, attentive, and efficient, while not making us feel rushed at all.

I don’t know about you, but we can often get sucked into thinking it’s from cancer or treatment and not just some other random thing. Do I think his overall health may be contributing? Yes I do. To learn it is something that can happen to a healthy aging person is somewhat of a relief and I’m glad Dave was diligent in his efforts to find comfort, if not resolution.

Fingers crossed he gets some substantial relief.

Such sad news. Jack Aiello is an iconic figure in the world of Myeloma Advocacy. I have had the pleasure of meeting him and working with him over these many years. He defied the odds in so many ways and brought his intelligence into the conversation and helping others. Thank you Jack and your family for your tireless work on our behalf. 💕 God’s speed.

I’ve posted about this topic before, but Dave still struggles with respiratory assaults and I haven’t been able to get this into his routine. So I’m working on it again. I get it. There is sometimes an overwhelming feeling of so much daily support, adding one more thing!!!! It’s just so much harder to get him well vs keeping him from getting sick with some prevention support. And with our 3 yr old granddaughter around and her many sniffles I’m trying to make it less risky. They love playing and reading together and I want them to be able to keep doing that with some protections in place.

Anyway, I never posted this website, and I thought I would for you to look at. Amazon doesn’t have the nasal spray at the moment so I found myself at their website and ordered directly. It was easy and free shipping. I had gotten Dave the more expensive individual swabs specific for certain situations and convenience, otherwise the nasal spray is fine.

I learned of this during Covid. As we were all scrambling around trying to figure out how to protect ourselves. Apparently various products like this have been around for awhile and they all but disappeared during Covid. So I even found a doc who showed you how to make your own. But many are back in full force and at varying price points.

I hope you find the information useful. The claim of several doctors, none ours or in the cancer world, is that respiratory viruses replicate first in the nose and usually over a day or two before they move into the body further. Using something like this when you are exposed to crowds or in places like a hospital can help prevent it from replicating. My goal is to have Dave use it when he ventures out and comes home, or has intimate play time with his granddaughter. Wish me luck!

Nozin® Nasal Sanitizer® 12mL Bottle - Nozin® Nasal Sanitizer® Antiseptic Nozin® Nasal Sanitizer® antiseptic in a 12 mL bottle with 20 starter cotton swabs. Nozin® Nasal Sanitizer® is an over-the-counter (OTC) alcohol-based topical antiseptic product with demonstrated broad spectrum efficacy. Nozin® Nasal Sanitizer® Nozaseptin® formula combines ethanol with antioxi...

Jenny is a mover and shaker in the world of Myeloma. She went from a one man band with the support of her family to a full on non profit gathering patient’s data voluntarily and matching them up with researchers looking for that data.

Kudos Jenny!!!

https://m.facebook.com/story.php?story_fbid=903925611771686&id=100064627664296&mibextid=cr9u03

Exciting news! 🎉 Our founder Jenny Ahlstrom and Tony Newberne, HealthTree Coach, were featured on ABC News. Hear their powerful stories and learn how HeathTree connects people with cancer to researchers to complete life-changing research faster than ever. 📺 Link: https://buff.ly/3XYZeYG

Today is our 43rd Wedding Anniversary and we are in Little Rock for Dave’s followup on the Talvey. Everything looks stable and we all decided to keep doing what we are doing without any dosing changes. Dave is tolerating it well.

I spoke with our insurance nurse on the phone yesterday about the new American Cancer Society guidelines for an immune support called IVIG. The new guidelines qualify Dave to get it monthly regardless of where his IGG marker is. She directed us to request Dr van Rhee write a letter of medical necessity for approval. It takes awhile when new guidelines come down for insurance companies to follow suit. So this will help push things along. It should help him be sick less with viruses and recover quicker if he gets one. So fingers crossed 🤞 on that.

Carry on! 💕

We are back in LR for our checkup to see how the new therapy is doing for Dave. Everyone planned this checkup around the last SR-71 Reunion in Sparks NV so I could attend as an honored “Habu Brat.” It’s a play on military brat. Linda and I created this group many years ago and were so excited when a call for a group photo happened and many, not all, came over for the photo op. We had such a fabulous time. I drove home Sunday exhausted and got on a plane for Arkansas Monday morning. It was so worth it! There were almost 500 in attendance to celebrate this marvel in aviation and their part in it.

Well we sure have had a time of it since getting home. The Parainfluenza #3 has wrecked havoc on Dave and he’s still not over it yet. Our local has postponed his Talvey and we have next week to hopefully be well enough to get it and not do the step up over again. For some reason his throat has just been on fire. Unable to eat much or drink much. He did get some fluids yesterday while we were in to get the Talvey, which got postponed. He felt a lot better of course. It was good our doc stopped in the infusion to get his eyes on Dave to see what was going on. We had gone into urgent care at his direction the previous week and he got a strep test which was negative. What a challenge it has been. He will get more fluids and IVIG this week. That should be helpful.

On a lighter note, I’m going to the last Blackbird reunion in Reno at the end of June. My dad was an SR-71 Pilot with the first operational squadron that formed in 1965 at Beale AFB. I’m very excited to meet up with some of the kids I grew up with there and some of my Dad’s colleagues that are still around. I am really blessed to have been a kid connected to aviation history of the fastest and sexist aircraft ever! ❤️🇺🇸

For those interested, my fellow brat and I started a FB page called Habubrats SR-71. It’s very active. Originally to reconnect with our fellow brats it has become the definitive site for all things HABU. We dispel the myths and tell the true stories of the SR.

Well we made it home.

After I posted how smooth things were going, Dave tested positive for parainfluenza 3! Sigh. Poor guy. He’s really tired of coughing and feeling crappy. It’s a respiratory virus that is generally mild, but you know, MM patients can have something mild that becomes anything but!

He was hesitant to go home because he felt so bad. But I convinced him to rest and treat all day Friday. I packed all his clothes for him so he wouldn’t have to deal with that. And sure enough, he felt better and we made it home. I just wanted him in his own space to recuperate.

Our flight was delayed over an hour because of ice and hail in Denver where the plane was coming from. So the airline rebooked us on a different connecting in Vegas. We were in line with quite a few others on the Little Rock flight in the same situation and we all laughed about having “A” boarding on our original flight and now were all at the tail end of of “C” boarding! So none of us got to sit with our significant others. It was, take the first middle seat you find. It’s a short flight, so no big deal.

Chatting with a random couple from Roseville on why we were in LR told me they had a friend who had cancer. Was told to go into hospice. Thirty years later he’s still playing golf. So there you go. Sometimes you get inspirational experiences in the most unlikely scenarios. ❤️

My cool tee that APN, Tess gifted me with. I love it.

So now, can our local step up and step in, and get Dave’s his next infusion in a timely manner? Dave did an end run around the linebackers and left a message for the infusion scheduler. She’ll slip thru the line and contact the doc, “what the heck is this?” Haha 🤞

Me an Ellen.

Tess, an APN in infusion B gave me this cool tee.

Two of my fav women in Little Rock. Ellen, an APN going back to Dr Barlogie days at UAMS who is killing it at Bristol Meyers and the Car T program. And Kim Burkett, Director of Goodness Village! I’ve longed to get them in the same room together and it happened. Wine, martinis, and appetizers.

Interesting!!!!

According to current research, viruses like hepatitis B and C could be a potential cause of multiple myeloma, and eliminating infection with antivirals could be a way to both treat the viruses and improve myeloma outcomes. Learn more here: https://healthtree.org/myeloma/community/articles/hepatitis-treatment-cures-myeloma?utm_source=social+media&utm_medium=facebook&utm_campaign=article&utm_content=general

Dave update: It’s been a very smooth trip. Dave is tolerating the new therapy very well and we’ve had no issues. He gets his first full dose (after the three step up doses) tomorrow morning. The doc thought it would go easy because 1) it’s similar to what he’s already on and 2) he has very little disease burden (so not much of a cytokine storm was expected).

We have the echo to do and then see the doc for discharge. Still planning to fly home on Saturday.

This pic of sweet Dave after one of the dosing days. They are long, and they hit you with Benadryl which knocks you out and then Dex which revs you up. So he was still sleepy when we got home and then you know, up most of the night. Eating all the snacks. 🤩

He’s getting a little leg swelling but mild compared to what he’s had in the past. And his cough has all but disappeared.

We’re grateful as always to slide right in here. It’s familiar to us and we enjoy seeing the many we’ve interacted with all these years.

❤️

Dave’s bone marrow biopsy shows no myeloma or MRD. The PET shows he does have a lesion on his sacrum (this is why they run tests from many different directions at the big research facilities!). He’s not experiencing any discomfort from it which is great.

His light chains are slightly elevated, which is what brought us here earlier than our scheduled checkup. (Good job local doc!)

We didn’t get the MRI done, it’s the one clinic that UAMS really needs to upgrade and hasn’t. They are just always slammed.

I did ask for them to run some heart tests. We haven’t had any in many years and with that chronic cough Dave had and the severe edema he experienced (gone now) I just wanted a precautionary test to see how his heart is holding up. The EKG looks great. They’ll do an echo in a couple days. I just love how I can ask and say why and “Sure! We’ll put that in and get it taken care of.”

We started on Talvey today. Very similar to the Tecvayli protocols. Some different side effects to watch for. Some are quite universal and some aren’t. Those are the things that always worry Dave and depress me. But we will get thru it and adjust like we always do.

We had a 5 hour day in the infusion center getting everything done. That doesn’t count our 8:45 AM appointment with our doc. So we are tired.

Our Goodness Village Little Rock apt will be ready tomorrow, which is just awesome. If everything goes as planned we will actually be able to fly home next weekend, which is fabulous.

This is an every other week protocol after the first full dose is administered. Discussion of going monthly at some point were mentioned. A lot will depend on how it’s working and Dave’s side effects.

Talvey was actually approved and been in use for about a year now, so the teams here are delightfully knowledgeable and were able to tell us what they’ve seen in other patients so far. There are a couple more things coming soon, so that was heartening. We’re hoping that we get a good long run out of this and he manages the side effects easily. The main ones are dry mouth, dry skin, brittle nails, change in tastebuds, weight loss. They can be mild or severe.

OF NOTE for all of you, there are new American Cancer Society “guidelines” for IVIG monthly infusions that are now “recommended” regardless of whether your numbers are bottomed out or not. Insurance companies may or may not follow them, but it is a new guideline that is beneficial for cancer patients in general to help with their suppressed immune systems. The hope is it prevents complications that could be avoided. I appreciate this approach as Dave has enjoyed remission but had suppressed immune system complications that have been ongoing and hard to get sorted.

We return in 2 mos to check that the Talvey is working and how Dave is managing with it. All in all, it’s been a very smooth relapse and moving on to the new therapy. No drama!!!! 🙄 I’ll take it. ❤️

We made it to Little Rock with ease. Stopped to get some creature comforts and food for our room to watch tomorrow’s Masters. We have nothing on the schedule so we’ll just chill.

Dave’s small suitcase did get battered and broken (it’s old), so I told him we need to replace it and I will work on that while we’re here.

That’s our sweet Savannah who had been getting swim lessons this winter. She absolutely loves it and is a rockstar! After her first lesson they told Angelica she was too advanced for the class and the day and time changed to a more challenging class. Our little water bug absolutely LOVES swim day! ❤️

So folks, things are ramping up again as Dave is relapsing on the Tecvayli. He got 14 months of durable remission which was an average time, but it has since extended to about 18 months. A new cousin to it got approved just weeks ago and so Arkansas asked us to move up our visit instead of waiting until mid-May. We are heading out on Saturday. Due to the quickness, I won’t be driving our car, though I suggested Dave head out and start his tests and I could drive, but he didn’t want to go alone and decided to just pay for the rental car. I usually drive if we are going to be there for an extended period vs just a 5 day ck-up.

Goodness Village Little Rock will have an apartment for us late next week, which is awesome. So we’ll stay at a Marriott until then using our points and be in an apt in time for his therapy to begin, which is a much better space for that for many reasons.

He is still struggling with a lingering cough that all believe is allergies. But nothing seems to be working to resolve it, just lessen it. He’s on an antibiotic for sinusitis. And perhaps they can look at those weird nodes on this fingers.

I signed up for Farmbox California. I had read about them. Local farmers, delivered. A robust website to add, change, skip, etc. I added butter and we got our first box this morning. Was very pleased. I have family here now so they will enjoy it and I’ll suspend while we’re gone. I’ve been always looking for better food sources to just try to do better. I have a great local butcher now for meats. I do have a couple good groceries. So it was nice to try this group out. I love there aren’t styrofoam coolers and what not.

Anyway, say some prayers for us in this marathon saga as we head into 16 years of being a resident of Myelomaville. And I remain very grateful for those years.

Dave showed me little nodules on his fingers tonight. “do they hurt?” No. I was like “that’s weird!” Poor Dave. He has so much weird stuff going on. They are on the high part of his fingers. I hate stuff like this. He looks to me for answers and I have none. Sometimes I really hate myeloma. And I mean besides hating that he has it all! I know you get it.

This is great news. Let’s hope we see some stellar duration of remissions with Car-T administered earlier in the treatment line up.

FDA approves Abecma® (idecabtagene vicleucel; ide-cel) for triple-class exposed relapsed or refractory multiple myeloma after two prior lines of therapy. Read more: https://www.myeloma.org/node/10777

Dr. Durie’s Myeloma Minute is always informative.

The is out! This week we feature upcoming events, Dr. Durie discusses the details of a recent FDA Oncologic Drugs Advisory Committee (ODAC) meeting, the Iceland Cycling Expedition, and Dr. Durie answers a patient’s question.
https://www.myeloma.org/resource-library/myeloma-minute-fda-odac-recommends-early-use-cilta-cel-ide-cel-treatments