Dara, latest concerns and general life updates.

I’m about to embark upon week three of the Dara treatments.  So far so good — I almost feel guilty saying that because I know some chemotherapies are truly toxic to patients, but this new cocktail hasn’t been terrible.

And yes I know Dara is not “technically” a chemotherapy.  I hate semantic games.  Besides taking Revlimid with it kind of makes it a chemo in my book.  As does getting it at a cancer clinic.  When I have cancer.  So if you are about to correct me in that really Dara is  immunotherapy and blah blah and then you get this sudden prescient feeling that I want to punch you in the nose, well, go with that warning.

So far only three side effects have really gotten on top of me, although this early in and with most of my previous treatments having cumulative effects who knows how long that will last.

One is just the fatigue — I blame Rev for that but for all I know it’s this Kraken of a disease letting its presence be known (hard to differentiate, but Rev and Pomalyst made me borderline narcoleptic).  Also the leg discomfort, although I think we figured that one out this week.  I had the monthly IViG infusion this past Monday and in talking to nurse Amy that day about it we decided to try just doing half the Benadryl dose to start (25 versus 50) to see if it worked and … it worked!  No more annoying leg tingling.  Going to ask Friday for the Dara IV if we can try the same thing.

The last side effect is my voice.  When I was doing weekly 40 mg of Dex I would lose my voice a day or so later for a few days.  Now with whatever the steroid is they are giving me with the Dara (not Dex) I lose it for a full week.  Kind of annoying but I’ll take that over being rewired into a psychopath.  My personal life continues to improve (knock on wood) since getting Dex out of my life so I’ll take that trade any day of the week.

BTW I’m still taking 2 4 mg Dex’s a week … one the day after treatment, then one two days after.  On infusion day however I get something else, the name of which of course escapes me.  I’ll try to remember to snag it and the doses tomorrow.

Last week I had severe back pain on Wednesday but it hasn’t repeated itself, so marking that one off the list of side effects for now.  GI’s doing really well, although I have really had little to no appetite since the January colon resection.  It occurs to me to question at this point whether I overate due to depression caused by the Dex/whatever else, if this is a function of my stomach bacteria being all messed up between the chemos and surgery, or something else.  Not complaining yet, however, as all of my clothes fit better.

On to deeper thoughts.  While we have no idea yet (too early, according to Dr. Matous) if the Dara is working, my brain finally put together the variables that led up to this decision and the conclusion is somewhat nerve-wracking.  The original plan was to wait to try to get into a clinical trial doing basically the exact same regimen we’re doing now.  Instead “we” just decided to move ahead several weeks ago.  Being an analyst by profession it’s odd that I didn’t run that decision through my usual gauntlet of why’s and wherefore’s , but something clicked on its own last week — I’m pretty sure the decision not to wait was made because my #’s jumped so high during that chemotherapy break.  I finally saw my M-Spike at my meeting last week with Dr. M. before the second Dara treatment and, um, “wow.”  Highest it’s ever been “wow.”  Like 6+.

The jump my pre-cancer mind would have immediately made that took me two weeks is the implications of that.  If this treatment doesn’t work, which we won’t even know about for another few weeks I think, I’m kind of fucked.  Well more fucked.  Fucked-er?

I like F-bombs by the way.  Sorry if that offends anyone or seems uncouth.  Fearing useful words seems silly to me but to each their own.  At least that’s the pseudo-intellectual response prepared for when my daughter inevitably releases a torrent of them at school someday and I have to explain how that’s pretty much my fault.

Digression reined back in … so that’s my interpretation, anyhow (“fucked-er”), but follow me here.  When my M-Spike was lowish (lowest I ever got was about 1.4, I believe), everyone seemed happy just treating this — well if not casually, then with the lack of ZOMG WE HAVE TO TREAT THIS NOW STAT BZZZ BZZZ HEWP HEWP that you always assume is the case with cancers (and sometimes is).  I was told again and again how it’s better to have a gradual trending down, although my understanding is that at least until recently about half the Myeloma experts wanted the lowest MRD (“minimum residual disease”) as possible and half were good with the gradual thing.  We had options, as well — if something didn’t work, like Ninlaro or the BiRD thing (mixing Rev/Dex with an antibiotic), no biggie.

However, now things are a bit more dangerous.  The bad #’s are super high, and presumably are going to go higher or stay at this heightened level if the Dara does nothing.  While there are certainly more options to switch to, that does tend to trim the choice and immediacy of treatment options a bit, logically.  Been pondering that a lot lately.  Our wiggle-room, as it were, has been significantly trimmed in that a failure at this point may take us to a place that we can’t come back from so easily (organ damage, etc.).  Up until now that has been more of a nebulous concern than a real one, but reality has a way of sharpening the picture on you at times.

Thankfully I’m in a good head space — I really do believe that Dex was the primary cause of most of my mental/emotional ills for the past several years, or at least the catalyst for quite a few.  So I take things in stride, I’m extra nice to folks and double-check everything I’m saying/doing before opening my trap.  I need to get back on the Androgel ASAP as well — kind of took myself off that, which was not a great idea but it is what it is.  I get into this self-sabotaging place sometimes where I know things are a bad decision and do them anyways, seemingly in spite of myself.  Never figured that one out.  I also need to get back on the calcium / vitamin D regimen as well — that one I do know why I stopped though, I was eating horse pills and got sick of it.  Have to remember to research that this week and find a better solution than giant chalky white pills I’m mentally balking at swallowing.

Back to the TRT (“testosterone replacement therapy,” sorry for the jargon), I was listening to a podcast this morning with a retired MMA fighter talking about how folks that were forced to stop using it when TRT was suddenly banned in the UFC (thanks Vitor Belfort!) after being allowed caused a lot of depression in those fighters who just stopped using it.  In case I forgot to mention it somewhere along the line my testosterone dropped way below where it was supposed to be so I started doing the Androgel thing but was terrible about keeping up with it.  Chemo may have done that or I had low testosterone before, no way of knowing now.  Either way I need to be more disciplined about this stuff.  I’m always on it with the chemo drugs, but the ancillary stuff not so much.

Still waiting for someone to do something about the sleep test I did … this is somewhat unprofessional at this point.  Need to remember to ask about that tomorrow at my infusion as well.

I know this is long but it’s been a week and I’ve done a lot of thinking lately, so excuse me a few more minor rambles if you will.

I hope I am not broaching a confidence here, but I received a message about a friend with cancer last week and it’s been on my mind a lot lately.  I’m going to repost it here, albeit with names removed, because it scared me more than a little.  It’s easy, at least after four years of this Myeloma existence, to forget that other types of cancers are not as treatable as mine can be:

Hi everyone. I wish I had good news to give you all, but unfortunately that’s not the case. The cancer is spreading all over and pretty fast. Each week I have new pain. I’ve tried everything that traditional western medicine has to offer, and there aren’t any options left.

I did receive a dose of Avastin, but one of its side effects is preventing me from getting it again. It weakens the intestinal walls and I have a tumor that is growing through my intestine.

So, I am planning to go to Germany for an immunotherapy treatment that isn’t available in the US. It’s costing me a huge portion of my life savings to do this, but I figure there isn’t really a better way to spend my money. I remember my mother once saying, “you can’t spend it when you’re dead!” [REDACTED] is coming with me and we leave in a week. We will be there for one week to start the 1st third of the treatment and then I will finish the last two thirds at home.

I’m very nervous about the precarious situation with my intestine, and I have so much cancer in me that this vaccine has to pretty much perform a miracle. I think it’s time to pray for a miracle everyone! I will update you all when I get back.

Sigh.  I know I’m being opaque here but I really don’t want to overstep a friendship by outing a friend, so please keep them in your thoughts.  And if you do read this I love you, kiddo, and I’ll have you in my thoughts.

On the bright side I was just this week corresponding with an old friend with prostate cancer who at least sounds like they are doing well (checkups every six months, if I remember right, so they’re either not too concerned or their insurance sucks).  Was more relieved than I thought I’d be at that news — I don’t see a lot of positive cancer news around me, so that was a pleasant surprise.  I hope people know that even if I’m not in touch as often as I used to be that they are always in my thoughts.  It’s a weird thing, this cancer life — so easy to disconnect accidentally.

On a slightly related divergent stream it’s strange as humans to contemplate the end of our existence.  I’ve been buried in Mass Effect: Andromeda since Sunday (thank God for gaming laptops when you have all-day infusion appointments) and one part of the story is the main protagonists mother dying from cancer and a memory of the parents discussing it.  Having lived 46+ years as the usual poster-child for ironic outcomes it concerns me that now that things are going well emotionally and mentally it’d be typical that I die from this now-ish.  Not that I’m looking for that outcome, mind you, I’ve just learned to read the tea leaves of my life a bit over the years.  Hopefully that’s just a thought and not a thing and we’ll leave it at that.

What else … oh.  Trader Joe’s is the greatest source of infusion-day snacks ever.  EVER.  Seriously, I got these amazing apple breakfast bars there and the cutest mini-bries ever.  Like a bite-sized full brie.  They’re adorbs, as a friend might say (and congratulations to you, NURSE Kate!).  LOOK YE AT THIS MINI BRIE AND DESPAIR.  OR JUST BE REALLY HUNGRY:

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Cutest.  Brie.  Ever.

I’ve probably mentioned it before but I have a hard time justifying the horrible snacks they have at infusion centers (full of chemical crap) with the fact that eating that stuff has probably given at least a few of these people the cancer they are there being treated for.  At this rate however I’m going to be the weirdo there in my infusion sofa chair working with a charcuterie and cheese plate.  I’ve started bringing Izze’s for the fridge too.  The nurses put an extra sticker from my blood tests or something on them so they look like prescription Izze.

Small things make me laugh.

Alright, brain dump complete.  More news as news becomes news.  BTW I’ve been linking some interesting, and more importantly understandable to mere mortals, articles on twitter.  Take a look sometime — I follow about 50 or so Myeloma experts and news sources and cut out the people that just retweet everyone else’s stuff, then pick the things I find interesting, so hope you do too.  Toodles!

 

Ouch, quiddit.

Woke up this morning exhausted after eight hours of sleep and with lower back pain so bad I can barely think straight.  Why I did not bring some sort of pain pill to work today is truly beyond me.  Back pain can be associated with Dara, no clue if they are connected yet though.  Hoping the exhaustion is more a factor of taking some Xanax last night to make sure I slept and the usual Xanax hangover.

Definitely grabbing an Oxycodone or something at lunch, fuck this.

Walked into our office manager’s office and her PC was misbehaving for the third day in a row.  Seemed to be related to the USB port that the Logitech wireless dongle thingy was in (couldn’t see a mouse cursor at a window I should have).  She believes the PC is just scared of me, and I have to admit anything more difficult to fix and I would have put my foot through her PC case.  I think it knows me well enough now to stop messing with me when I’m pre-latte and in pain.

Must.  Make it.  To.  Lunch.

Saw this yesterday and want to talk about it but I just can’t think straight today, posting it here to reference later.

 

 

First Dara treatment.

Sorry I didn’t post this in the last few days … Friday was a long day for me and this weekend was spent trying to sleep and spend time with the wife and daughter.

So last Thursday I went in for labs and height/weight tests to help the oncology team come up with the right dosage.  Then Friday I had to be at CBCI at 6:30 am (had to get up at 5:30 to make that with time for coffee) and ended up leaving at about 6:45 pm.  Normally it shouldn’t take nearly that long but as I’ll explain they have to do a bunch of pre-dosing of antihistamines, corticosteroids and antipyretics (aspirin, etc.), and I *think* they give you more on Day 1 as well.

Before the fun began Friday I met quickly with Dr. Matous, still in biking regalia, who went through the treatment with me and then noted that in August they may be doing some CAR-T stuff at CBCI.  That would be timed pretty well for me, although as a portfolio manager I’ve put my clients in enough biotech and CAR-T companies that I know how dangerous early-stage trials of that can be (reference Juno Therapeutics CAR-T troubles).  He also mentioned that, especially given how high my Myeloma numbers have gone during this chemotherapy holiday, that our new goal is more getting rid of the disease than keeping it at that manageable state (where we were happier with slower decreases in the primary metrics and much lower MM #’s).

All of which (those primary metrics) I left sitting on my desk this morning, and HealthOne’s patient portal is terribad.  I’ll post them up this week, but I think my IgG is higher now than when I first got diagnosed — the M-Spike wasn’t back from the lab folks yet on Friday so not sure where that is yet.

So anyways, I got pre-dosed with some basic stuff as mentioned before, and they had more ready — specifically Oxygen, since apparently Dara can mess with your respiratory system and with all the pneumonia and 46 years of abuse, wear and tear mine isn’t exactly 100%.  My nurse for the day was the awesomesauce  Melissa — going to try to highlight a few of those folks here since they’re putting in the work.

Things went fine in the first hour, although I was exhausted — had trouble sleeping the night before and on top of that they loaded me up with Benadryl which knocks me out on my ass.  When they began increasing the flow rate of the IV, however, I started getting the chills and severe neuropathy (pins and needles) in my hands, as well as that irritating calf pseudo-neuropathy I got with my last IViG treatment.  At that point they stopped the Dara, gave me more anti-side-effect treatments after getting approval, and then started it up again. I think it took about an hour for the side effects to subside, but my memory is a bit hazy from Friday.

I know at some point I had mental track of everything they had given me but unfortunately I forgot it all.  Thankfully HealthOne has a handy patient portal that has all of this stuff an asstastic excuse for a patient portal that had no information from Friday.  Sorry!

That’s basically it — I tried to sleep for a bit with some luck until just after lunch, albeit with being woken up every 30 minutes so Melissa could take my vitals.  I spent the rest of the day playing on the laptop and cranking metal (headphones, obviously) while just sitting in this little infusion room, munching on a couple of Trader Joe’s apple breakfast bars that I brought (delish) and chatting with Melissa.  Zero luck bribing any of the nursing staff to get me a Starbucks down the block, mostly I think because they had purchased a super-sub to commemorate a nurse’s last day that day and nobody went out to lunch.  No biggie.

Spent the weekend not feeling too bad although all the IV steroids messed with my sleep schedule quite a bit and I had some minor nausea.  Thankfully our weekend schedule allows for things like sleeping in since Amy and Ari go to Lifetime Fitness each morning for a few hours.  Took a nap or two but just tried to focus on not being a steroid-Nazi (success!) and just relaxing.

I think my next treatment is this Friday … Dara is given, at least in my case, once a week for eight weeks IV and then every other week for eight weeks IV.  Mix in the IViG every month and I’ll be seeing a lot of the CBCI folks, but that’s all good.  Need to remember to bring Melissa something, although a box of cupcakes for someone who had a hummus sandwich for lunch seems like a poor idea.  I’ll come up with something.

Dexamizzle, mah nizzle.

Starting the new chemotherapy tomorrow.  Dara-um-something.

Daramububab?  Daramububabistan?

It’s bad enough that I have zero idea what these drugs even do, I can’t even say the name of the damn things.

“What are you doing for chemo?”  

“Daramummmmmhhhmmppphhh.”

“What have you tried previously?”

“Bortezommmppphh.”

“Lenalidommmmmppphhgrrrgg.”

“Pomalidocidemmppgggrggll.”

“Ixazomibibble.”

I sound like Snoop Dogg trying to explain this stuff.  “Dexamizzle, mah nizzle.”

You know what they should do?  Make the name based off of the worst and most common side effects to pressure the pharma companies to fix them.  If your drug was required to be named “Explosivediarrheamumab” you’d fix the goddamn thing, I bet.

Annnnnnywho, here’s a description of the new drug from the Wiki page.  If you understand any of this you win.  Also feel free to tell me about how you know what this says so you can feel special about yourself at my expense:

Daratumumab is an IgG1k monoclonal antibody directed against CD38. CD38 is overexpressed in multiple myeloma cells. Daratumumab binds to CD38, causing cells to apoptose via antibody-dependent cellular cytotoxicity or complement-dependent cytotoxicity.

For reference, here is what cheesecake is, also from the Wiki page:

Cheesecake is a sweet dessert consisting of one or more layers. The main, and thickest layer, consists of a mixture of soft, fresh cheese (typically cream cheese or ricotta), eggs, and sugar; if there is a bottom layer it often consists of a crust or base made from crushed cookies (or digestive biscuits), graham crackers, pastry, or sponge cake.[1] It may be baked or unbaked (usually refrigerated). Cheesecake is usually sweetened with sugar and may be flavored or topped with fruit, whipped cream, nuts, cookies, fruit sauce, and/or chocolate syrup. Cheesecake can be prepared in many flavors, such as strawberry, pumpkin, key lime, chocolate, Oreo, chestnut, or toffee.

Sigh.  Seriously, who the hell makes cheesecake with digestive biscuits?  That sounds gross.

I’m going to apologize for the following statement up front since I have heard from a few MM docs who read my blog now.  But sometimes I wonder if doctors are that much smarter than me that they just understand that first explanation like, well, the second one, or if it’s a language more designed just to keep us medical Luddites from questioning them.  I’ll admit that working in finance I’ve often felt the desire to jargon a client into shutting the fuck up, so I could understand that.  Regardless I’ll just be calling it “Dara.”  If anyone asks for an explanation of how it works I’ll just make up something like I do with my daughter, who may or may not still believe babies come from Costco (*innocent whistle*).  Like Daratumumabagofuckyourself or whatever the hell it’s called makes the cancerous cells watch a director’s extended cut version of that horrific reality show about the Kardashians until the myeloma gremlins commit premature apoptosis, which is what the process is called with the white smoke and stuff when they choose a new pope*.

* I could be wrong on the pope thing, I fell asleep the day they went over etymology in class.

So tomorrow morning I have to be at CBCI at 6:30 AM to get started … they have me there all day, which honestly is fine.  Living in Parker on the south side o’ Denver I can’t get any fun places downtown to deliver food, so if I get hungry (dubious) I can order something good to the CBCI office. Even if you’re not hungry the look on the delivery person’s face at a cancer clinic is usually priceless, sort of this combination of fear, desire to leave immediately and regret at having spit in your food.  Like most of my married life.  Whatever, CBCI has bitchin’ WiFi and I’ve already loaded up the Alienware LAPTOP OF DOOM with Ghost Recon: Wildlands and I can access my home theater server from anywhere.

As a total digression, one thing that’s actually fun about cancer (yes, I just said that, I try to be the glass half full guy when not Dex’ed out of my gourd) is that you rarely lose the argument with yourself over whether something’s too expensive or over-the-top.  That’s why I have a DS1515+ running at home on a 250 MB line with over 20 terabytes of storage.  I.e., there’s nothing too ridiculous.  I have my own Netflix, effectively.  “Hey me, think we really need this?”  “GODDAMN RIGHT, ‘MURICA!!!”  “Well that was easy.”

Anyways back to chemotherapy talk.  It’s funny how after a few years I don’t even stress about a new treatment as much as whether I’ll be able to game and/or watch a movie comfortably while they pump this shit into me.  In fact, my only real concern is watching myself like a hawk to make sure the Dex they have to apparently give me doesn’t change me back to “Dex Rich.”  Dara has become a standard of care already so I’m relatively sure they know what to expect and how to deal with it.  My job is to just sit back and entertain myself, and hopefully my nurse, all day.

Thank God, BTW, I wasn’t on Dex yesterday or the results would have gone viral.  First I get stuck on the highway for a good 30 minutes because apparently driving is too goddamn difficult for some people (major accident at 25 and Evans-ish), and then I get to University and some municipal worker has blocked and coned off one of the two lanes going north past Cherry Creek for no discernible purpose except to make me even more late.  How I did not open my window and, erm, “engage in some witty repartee” is solely due to the lack of steroids in my system.  Also I’m relatively sure not only would beer belly smoking worker guy not give a shit about causing a 3 mile traffic jam, he probably took the job just to cause that stuff.

I would.

This entry is as scatterbrained as I am today, sorry … too many things on my to-do list and random thoughts won’t stop popping up in my head while I’m writing.

Tomorrow’s the day and then I’m sure I’ll write something up either then or this weekend.  Toodles.