# 80 Fun and Games with Daratumumab

It’s been almost a month since my last post. It’s not that my life has been uneventful and I have nothing to write about. On the contrary, my life over the past month has been just plain weird. Living with chemo is by definition weird, but this month has proven to me just how weird it can get. Just living it has been weird enough. Writing about it near impossible until now.

I was probably optimistic in my last post about the effectiveness of Daratumumab as an addition to the usual chemo cocktail that is given to myeloma patients upon an initial diagnosis. I’m quite confident that Dara had a huge effect on my blood serum as evidenced by my lab results, which are anything but spectacular in the about face changes that have occurred over the past month in reducing the myeloma proteins in my blood. But at what cost?

One thing I have quickly learned is that life in chemotherapy is completely unpredictable. Get used to a particular effect of the drugs and it’s sure to change the following week. So over the past month I’ve had to go to emergency at the local hospital a couple of times for bizarre spikes in my temperature. Normal body temperature is an average 37˚ Celsius or 98.6˚ Fahrenheit. My temperature is normally around 36.5˚C. We all have some variation in our body temperature depending on what we’re doing and what the environmental conditions are that we experience. All the instruction literature we get as chemo patients tells us that if our temperature goes up to 38˚C that we should immediately get ourselves to the hospital. Well, that happened one day early in the month and we dutifully got to the hospital.

Well, we went unprepared. How would we know? I was not equipped to spend three hours in the hospital never mind three days. I had no change of clothes, no toiletries and nothing to drink or eat. These were all things that I would need. I was upset because my phone was running out of power and I had no way of recharging it. I asked a nurse if there was anyway of charging it. She took it away with the promise of charging it. I inquired about it a few hours later and she had trouble finding it to start with and it had not been recharged at all. I called home and Carolyn sent up some much needed supplied including a phone charger. Still no changes of clothes however and no toiletries.

Initially I was put on a gurney then transferred to a bed in an isolation room because the staff knew that I had myeloma and hence über sensitive to infection. I was immediately hooked up to a whole set of monitoring equipment and an IV was used to pump me full of antibiotics. The fear was that I would go septic and that’s a death sentence. I slept fitfully the first night and broke out in a cold sweat every once in a while. I had a very local cellulite infection in my lower right leg but that was discounted as the source of my fever. Apparently the cellulite was coincidental.

Later that day I was moved to another room in the emergency ward right at the back of the ward with nobody around. It was quiet and they had by then removed all the wires that connected me to the monitoring equipment although the IV was left in place. I got something to eat. Hospital food is a standing joke, but it was no joke for me. I wasn’t expecting gourmet restaurant dining, but I didn’t know they could do that with eggs. I was hungry enough to force it down but a steady diet of that food would be a great weight loss plan.

Thankfully I was transferred to another ward on the third floor later that afternoon. The food didn’t improve but the surroundings sure did. I had a large room with an adjoining bathroom. I asked for toiletries and was provided with a toothbrush and toothpaste as well as a towel. My GP came to see me both while I was in emergency as well as when I was in D3 the ward I to which I was transferred from emergency. I was in the ward just a day and a half. My temperature had returned to normal by then. My GP informed me that I had a non-specific infection. They couldn’t determine why my temperature had risen as it did. The docs don’t like it when they can’t pinpoint the source of an infection. I figured that it must be an artefact of the chemo meds or my myeloma. The literature on my meds states clearly that fever can be a side effect of the drugs. That’s what I’m going with. As an aside, Carolyn just took my temperature and it was 35.4˚C. It has been as high as 38.3˚; clearly, it’s all over the place.

My GP sent me home, thankfully, the third day I was there. They couldn’t determine any cause of my fever so there was no point in keeping me in the hospital where space is at a premium. I was very happy to be going home but there was obviously something haywire somewhere so I was a bit apprehensive about it. From this day on Carolyn would take my temperature and it would fluctuate wildly but generally settle around 36.5˚C. An effect of my hospital stay is that I missed my first week of chemotherapy. We had to reschedule my program so that my chemo would start the following week on Thursday. That first few hours of chemo was a bit difficult as my body became accustomed to being assaulted by these foreign substances, especially the Daratumumab. I spent seven hours the first day and seven the next at the Cancer Care Centre at the hospital while they infused me with Daratumumab. I had a rough go of it to start with dry heaving and whatnot but it smoothed out and I have had no undue effects since.

Throughout the month my temperature fluctuated between 36.5˚C and 38˚C. It never stayed at 38˚C for any length of time so now the issue for us was when to go to the hospital and when to wait for my temperature to go down to something more normal. Well, the decision was made for me this week when on Monday I started feeling odd. My temperature was high but I was in no mood to go back to the emergency department at the hospital so we decided to wait and see. On Tuesday morning I was not feeling well at all and stayed in bed all day, something I had not previously done at all. My temperature fluctuated some during the day but was higher than normal most of the time. I noticed that my legs were sore but that was nothing new. I ‘slept’ that night but I think that unconscious would be a better description of what I experienced. On Wednesday morning early Carolyn called 911 and an ambulance came and took me to the hospital. I was effectively paralyzed from the waist down and had a high temperature.

This experience in the ER was light years different from the previous one. This time I felt respected and was treated with kindness and care. The ER doctor called for some blood and urine tests. Everything came back normal. I could stand now and take a step or two but I was very unsteady on my feet. We all decided that I should go home.

The issue that dogs us now is determining the causes of my fevers. I spoke with my local oncology GP and we decided that I would forego my Daratumumab infusion this week to see if that might make a difference to my temperature fluctuations. The jury is still out on that one. More on this in my next post which will be sooner than later.

#79. My Numbers!

This is the post I’ve been looking forward to writing for some time now. It documents a radical improvement in my myeloma situation. Now, if only I could find a way to rapidly decrease the problems and pain I get from arthritis and degenerative disk syndrome, I would almost be back to a normal life. Of course, I keep forgetting that I’m 74 years old and that I’ll never be able to do the things now that I used to do just ten years ago. But enough grousing about my limitations, it’s time to focus on some recent victories that have everything to do with my numbers.

For me, the one thing that came along with the diagnosis of multiple myeloma or bone marrow cancer was (and is) an obsession and fascination with my numbers. I wrote about this earlier in a blog post on December 17th, 2019 (https://rogerjgalbert.com/2019/12/17/access-to-medical-records/). Now is a good time to revisit my obsession with my numbers because I’ve recently had some pretty spectacular changes in some of my critical numbers. I concur with Paul Kleutghen when he writes:”We (patients and caregivers) have all become so attuned to focusing on numbers that any excursion out of the “normal” causes worries and sleepless nights.”* I generally don’t lose sleep over anything, but, like Kleutghen, I am focussed on my numbers, and I get pretty upset if my numbers are going in the wrong direction or stand outside of the reference numbers.** Of course it’s an entirely different story when my numbers go in the right direction. Numbers are important to me and you’ll see why in this post.

My numbers refers to the lab results I get from frequent visits to the Vancouver Island Heath Authority (VIHA) lab in Courtenay, or to the hospital lab. As a regular thing I get checks of my blood, my white blood cells, red blood cells, monocytes, hemoglobin, neutrophils, eosinophils, basophils, etcetera. I also get regular tests of my kidney function by analysis of creatinine in my blood serum. (I have access to all my lab results through an online VIHA service called MyHealth.). By the way, a really good source of information about reading our lab results can be found here: http://media.myelomacentral.com/wp-content/uploads/UnderstandingYourLabResults.pdf.

Once a month or so I get tested for more myeloma specific indicators in my blood serum. These are paraproteins and free light chains, both kappa and lambda. Our blood has both Free Light Chains and Heavy Chains. These are simply descriptions of the organization of proteins in our blood serum. Without getting into too much technical detail it’s important to note that some myeloma patients are kappa free light chain myeloma patients and some are lambda free light chain myeloma patients. I’m a lambda kind of guy.

So, I went on a new chemo regimen in January. It’s composed of dexamethasone, a glucocorticoid, lenalidomide, a chemo drug (they’re not sure how it works) and Daratumumab, a monoclonal antibody. If your eyes haven’t glassed over yet from all the technical jargon I invite you to have a look at the table below I got from MyHealth. It refers to my Lambda Free Light Chains from June, 2020 to February 26th, 2021. It’s a very informative table. The red numbers highlight times when the lab results indicated that I had lambda free light chains higher than the reference range, which is conveniently given on the right in the table. You can see that from September 30th, 2020 until January 27th, 2021 that the myeloma was getting more active again in my blood, a conclusion supported by the redness of the numbers therein. Not only that, but you can see that the amount of free light chains in my blood was increasing rapidly during that time from 44.2 milligrams per litre of blood on September 30th 2020 to 201 milligrams per litre of blood on January 27, 2021, but in fact had been increasing from June 30, 2020. That was a very worrying trend because the more free light chains in my blood the sicker I get.

Then I started the new course of chemotherapy and the lambda free light chains in my blood went from 201 to 11.7 mg/l a number well within the reference range. That”s why I got so excited when I saw the ‘normal’ 11.7 mg/L on February 26th, just a few days ago. In my discussion with my oncologist in Victoria, he said that we shouldn’t expect to see any positive results for two to three months and here I went from a high of 201 to 11.7 in a month! Now, that is cause for celebration. It means that the Daratumumab is my buddy and is working better than expected. Hallelujah!

____________________________________________________________________________________________________
*https://www.myelomacrowd.org/living-with-abnormal-free-light-chain-ratios/

**reference numbers are a range of numbers within which numbers should fit in a ‘normal’ person. Reference numbers are where the majority of people would fit in terms of their standing on any particular measure. It’s a range because there is understandable variation from patient to patient. For example for Kappa Free Light Chains the reference range is 3.30 – 19.40 mg/L.

#77 I Carry On.

#77 Mid-February. Snow blankets the property but thankfully it didn’t fall when I was scheduled for chemotherapy at the hospital. It looks like it is respecting my hospital schedule of appointments. My next appointment for chemo is on the 18th, Thursday. I was successful with my first dose of chemo drugs last week, but there was a glitch in my chemo dates. I developed a fever on February 2nd in the afternoon. My temperature reached 39˚C on the 3rd. One thing we are told over and over again as myeloma patients is to go to the hospital if you develop a fever at all. So, off to the hospital I went. I ended up in the Emergency department for a day or so before they wheeled me up to D3, a ward on the third floor of the hospital. Thankfully I wasn’t there long. My docs tried to figure out what caused the fever, but they weren’t successful. They pumped me full of antibiotics in case of sepsis, a very reasonable thing to do. I developed some cellulitis in my right ankle, but that did not prove to be the source of infection. It may be that the fever was a product of a random myeloma issue. One thing is certain. I do not want to repeat that hospital experience. 

What the Emergency Department interlude produced was a delay in the start of my second round of chemo. Turns out I started with the first full day of infusion on February 11th followed by a slightly shorter day on the 12th. I was supposed to start this course of therapy on February 3rd

I’m not sure what to think at the moment. My first dose of daratumumab infused was successful. I had only a slight reaction to it. That’s really good. I hope the rest of the daratumumab infusions go as well. If they do, after having weekly sessions for a couple of months, then bi-weekly ones, I end up with infusions once a month for as long as this cocktail of daratumumab, lenalinomide and dexamethasone works. I’m hoping for a long respite from active myeloma. Of course, as I’ve often repeated, myeloma is incurable, but it is treatable. Given all the challenges I face, I’m determined to make my 80th birthday, that’s six years from now. 

For the time being, my hospital visits for daratumumab infusions regulate my life. It’s really not so bad. The nurses in the Cancer Care facility at the hospital are great and make me as comfortable as possible for my infusions. One thing that may throw a wrench in the works is the very likely possibility that I will need radiation therapy on my jaw. I will have to travel to Victoria for that. I consult on the phone with a radiation oncologist tomorrow morning. I’m not sure what we can accomplish on the phone, but it’s a start. The pain in my jaw is pretty insistent. 

My family is my salvation. Carolyn is amazing and makes sure I get my meds when I need them. I take quite a cabinet full of meds twice a day. I’m hoping to modify the number of drugs I’m taking. I may be taking too much in the way of pain management. The effect of my pain meds is dizziness. In the mornings I can predict exactly when the dizziness will come on. It doesn’t bother me in the afternoon because meds have worn off by then. 

Throughout all of my myeloma life I try to keep a real connection with the action around me on the property. We’re getting a number of birds at the feeders. The jays are right into the suet and now we’ve got some woodpeckers, varied thrushes, and towhees coming to the feeder. Some flickers join the other birds competing for the suet. The smaller birds like the finches, pine siskins, goldfinches, and nut hatches focus on the black sunflower seeds and nyger seed in the feeders themselves. It’s sunny today and the snow is melting. Tilly, our Bernese/Shepherd cross loves this weather and makes nests in the snow on the deck. 

She spends way more time outside now than inside. She is a sweetie although I wish she wouldn’t bark quite as much as she does.