Author: Beth

I was diagnosed with MM in January of 2003. I underwent various treatments, including thalidomide/dex, revlimid/dex, dex alone, a clinical trial of CNTO 328, and Velcade, Doxil and dex until late August, 2007, when I had an autologous stem cell transplant after high dose melphalan. I experienced what's known as a very good partial response (VGPR). Since then, my myeloma has been stable.

First Round of Carfilzomib and Cyclophosphamide Results

Even after all this time, I’m still not sure how to take the free light chains results.  I’m not a science-y person.  Dr. Rodriguez says that there’s been an improvement. This is the result from last week’s blood draw.

Component Your Value Standard Range
Free Kappa 3.19 mg/L 3.30 – 19.40 mg/L
Free Lambda 163.95 mg/L 5.71 – 26.30 mg/L
Kappa/Lambda Ratio 0.02 0.26 – 1.65

When I became aware that I had myeloma, the FLC test wasn’t used. We just looked at my m-spike(s) and quantitative immunoglobulins. It was a pretty simple way to see what was going on.  The FLC test is much more sensitive, so it’s a better diagnostic tool.

Results from July, 2019 for comparison.

Component Your Value Standard Range
Free Kappa 7.06 mg/L 3.30 – 19.40 mg/L
Free Lambda 415.22 mg/L 5.71 – 26.30 mg/L
Kappa/Lambda Ratio 0.02 0.26 – 1.65


The first cycle has been ok.  There’s a long list of possible side effects, but I haven’t experienced anything harsh. I have chronic gastritis, so that definitely affects how my stomach feels.  Were it not for that, I might get by with just the dex side effects.

For me, dex produces very predictable side effects. On the day I have it, I feel really speedy and I sweat profusely! I have trouble sleeping that night, so it’s not unusual for me to be awake until 3 AM.  Usually, I will sleep a few hours and be ok with that. The next day, I can be extremely grouchy. My face will be red.  The day after that, I feel exhausted.

It’s amazing that in the early days of my treatment, I would have to do what they called pulsed dex.  I would take 40 mg of it each day for 4 days, then have 4 days off.  Then I’d do it again. And again.  It was torture.

This week I have no treatment.  That’s how it’s scheduled.  Three weeks on and one week off. I’m happy to have this break.  I’ll let you know how the next cycle goes.

Carfilzomib and Cytoxan

Well, the daratumumab and pomalyst train has left the station without me.  My doctor decided that it wasn’t helping me anymore, so I’ve moved on.

A few weeks ago I started carfilzomib (Kyprolis) and cyclophosphamide (Cytoxan).  I also have 20 mg of dexamethasone every week. I have carfilzomib on Thursdays and Fridays and Cytoxan only on Thursdays.  I’ll have three weeks on, then one week off.  So far, my CBCs are pretty good.  I have only slightly low hgb, rbc and platelets.  Those were all low most of the time before this, anyway, so that’s nothing new.

As soon as I have some test results to post, I’ll do that.

If you’ve been on this treatment, I’d like to hear from you.

 

Darzalex schedule change

I recently had a change in my dara schedule. I had been going once every 4 weeks, prior to this month. My doctor decided to have me go every 2 weeks, starting this month (April, 2019). He wanted to give that a try because of an increase in k/l ratio.

I still have a pretty low level of disease, so we’ll see what the change in treatment frequency does.

ComponentYour ValueStandard Range
Free Kappa5.21 mg/L3.30 – 19.40 mg/L
FREE LAMBDA315.72 mg/L5.71 – 26.30 mg/L
KAPPA/LAMBDA RATIO0.02  0.26 – 1.65

Revlimid, Darzalex and Dex

It’s been ages since I posted, but that’s because there’s been nothing new to report.

I recently began treatment with one of the new-ish monoclonal antibodies called Darzalex (daratumumab, aka dara).  In addition to Darzalex, I’m taking an older drug that I’ve used before, called Revlimid. Once a week, I take a 20mg dose of dexamethasone.

It had been a little more than 9 years since I had any treatment for myeloma. After a stem cell transplant in 2007, I had no need for treatment.  My disease stayed pretty stable for several years. Then, about 3 years ago, I began to relapse a little more noticeably. Finally, my doctor thought it was necessary to start treatment before I started to exhibit any symptoms. Only recently, my RBCs dipped below normal.

PomalystI’ve had two infusions of dara so far. the first one took several hours to complete because of an infusion reaction. My blood pressure shot up to 203/97 and I developed a wheeze. The treatment was stopped for a while, and then the infusion was resumed at a lower rate. I was at the clinic for almost 12 hours that day.  I’ll write more about that in a future post.

As for Revlimid, I had that in 2006. It did very little for me, but I’m on it because my insurance company won’t pay for Pomalyst. This is because the dara/pom combination is considered “off-label” use.  The price tag for Rev is about $11k per month, and Pom is about $13k per month. My clinic has billed about $45k for each infusion of dara.  It’s hard to imagine, really!

Another first for me is that I’ve had a port implanted to handle the frequent infusions. It was an outpatient procedure. I was in at 7:15 Friday morning and out by 10:30 am. There’s some discomfort, but it’s not terrible. The surgeon prescribed some norco tablets. He even gave me a prescription for a lidocaine gel to apply before port accesses to numb the area before the needle is inserted.

That’s it for me now.  I’ll provide some more details in future posts.

 

https://www.darzalex.com/
http://www.revlimid.com/

One of those weeks

I’m having one of those weeks in which I feel exhausted at the cellular level.  It wears me out to speak, even.

I have new labs to post, but it’ll have to wait until I have a bit more energy.

I think this has been building for a while now.  I decided that I’m going to go back to the University of North Carolina at Chapel Hill Cancer Center(UNC), to an MM specialist, for management of my case.  I want to be sure things are handled properly from now on.  I had switched to a local heme/onc practice for convenience, but was alarmed at the apparent lack of experience expressed in casual comments the doctor made. As you know, myeloma is not something you want to mess around with.  I believe every effort should be made by the patient to get the best care possible for the best possible outcome.

I’ll post the results soon!

In the meantime, here’s a picture of a kitten.

Would you like to adopt a kitten?
Would you like to adopt a kitten?

Just about 8 years

It’s been nearly 8 years now since I checked into the Bone Marrow and Stem Cell Transplant Clinic at Duke for my autologous SCT.

I hate that my transplant buddy, Joyce, couldn’t make it this far with me.  When she told me her time was running out, I didn’t realize how fast it would go.  I thought there’d be more time. Three months, even.  I think it was about 3 weeks instead.

As for me, I am still living an uneventful life.  My MM test result are slowly climbing.  I have no symptoms.  My doctor said we’d wait for a “triggering” event before considering treatment.  He means that we’d wait until I have some symptoms, such as anemia, before undertaking any treatment.

In July, I broke my left shoulder, but it had nothing to do with myeloma. I wound up with something called a Bankart fracture (“bony Bankart”) and Hill-Sachs deformity. A piece of the bone called the glenoid broke off.  The orthopedist explained that there’d probably be no benefit to attempting surgery to repair it.  I will just be at risk for future dislocations, but he didn’t think that would be very likely.  I was happy to avoid surgery.

Here are some some pictures that show the injury.

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Farewell, friend.

I just found out that my friend, Joyce Wells, has died.  Myeloma took her life.

Joyce and I met in 2003, because she saw something I posted to the ACOR myeloma list, and wrote to me.  I always signed my posts, “Beth in NC.”  Joyce asked where I lived in North Carolina, and it turned out that we were less than a 30 minute drive from each other.  We met for lunch, and were friends ever since.  We scheduled our clinic visits and treatments at the same time whenever we could.  We’d meet for lunch before (or after) and sit along side each other when we were having infusions of something or other.  We tried to schedule our stem cell transplants for exactly the same time frame, but it didn’t quite match up.  Mine started a week before Joyce’s.  Still, our apartments were next door to each other, and we saw each other in the clinic every day.

Joyce WellsJoyce made me laugh.  I’ll never forget how she spoke of stem cell transplant programs as being either “inhouse” or “outhouse.”  Of course, she meant to say inpatient or outpatient.  It stuck though, and that’s what we called it from then on.  She explained what the term, “Massholes” meant.  It has never come up in conversation, but, if it ever does, I’m not going to have to ask what it means.

Dr. Peterson, who we both saw for a while, used to call us the “Myeloma Twins.”  I have to say that, if you can manage it, having a treatment buddy is the best way to get through chemo.

I don’t have anything more to say right now, except that I’ll miss her terribly.  I’ll never forget Joyce.  I’ll try to post more memories of her as time goes by.

Here are blog posts I’ve been re-reading to remember Joyce. I wish I had written more about her over the last dozen years.  Farewell, Joyce Wells

Here’s some news

I got a dog!

It’s been some years since my faithful dog Buddy died rather suddenly. I’ve missed him terribly. A few months after his death, I adopted a sick old collie, who I took care of until kidney failure took her life.

This summer, I was working on a client’s network (the client is Five Points Pet Resort), when I realized there was a cute little white dog following me around, wagging his tail and just looking all happy and goofy.  I asked one of the staff, “What’s the story on that little dog?”  She told me that he had been found wandering a country road a few months ago.  Someone dropped him off there, at the resort, hoping they could find his owner.  They tried for two months to either find his owner or a new home for him.

He’s a crazy little guy.  I always had older dogs, which are usually pretty calm.  He’s the first small dog for me, and the first dog I’ve ever had that was under 5 or 6 years old.  The vets he’s been to think he’s probably between one and two years old.  He’s a wild little shredding machine!

Philo

His name is Philo.  He loves to run and play, and loves to chew up stuff.

Stay tuned for blood test results later this month.