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:

img_0719

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!

 

Author: uwfacepalm

Father, husband, portfolio manager, cancer victim (multiple myeloma since 2013). Trying to navigate this goddamn disease as best I can while enjoying what time I have left via those relationships, friends, the UFC, gaming, MMJ, diving and helping teach it before this all went down as a PADI Assistant Instructor and a Dive Guide at the Denver Aquarium (well, before my white blood cell count went to shit thanks to the chemo/disease).

4 thoughts on “Dara, latest concerns and general life updates.”

  1. That’s sounds, overall, pretty positive stuff Rich. Great to hear you’re not so pissed off and angry with everything, that had to be the horrible steroids turning you into somebody else. Sounds like your treatment is bloody complex whereas mine is currently very simple. We’ve decided the gains we were getting through the chemo, lenalidomide based, were outweighed by how much it was bashing me up. So we’ve simply stopped!! We accept that it’s going to compromise my disease progression at some point but, whilst I’m off the chemo, I’m strong enough to focus on getting some strength back generally and specifically hoping to make my heart a little bit stronger. The Amyloidosis has damaged it hugely so that it operates at about twenty percent of its capacity and is super fragile. So been doing a few gentle bike rides and walking to dog for a little further each day. Also pushing myself a bit more in Tai Chi classes, which isn’t easy given the sedate nature of the practice……but I do it!
    Finally, you need to get out here to London so you can visit one of my fave coffee shops…….Fuckoffee. Seriously, it’s amazing and perfect for you….
    Good luck mate.

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    1. Lol at “Fuckoffee,” that made me snarf something.

      Yeah the last month has been strange. More for my wife, I think. Lucky her, she got a husband upgrade for free. I’m still in the “hey people aren’t treating me like I’m a dickhead” place, although it does feel like a cloud has lifted off of our house. It’s certainly been an exercise in seeing how the positive energy you put out there can come back.

      That’s not to say I won’t still have angry / depressed posts — i actually like those for the cathartic value of not only core-dumping that stuff but being able to look back at it and learn a bit.

      That’s awesome that you can get off the chemo for a bit — I already miss the few months I got to take off, but given how severely my #’s jumped I don’t see that happening again for a while. Nerve-wracking about your heart, sorry to hear that. I’m afraid I’m not as up on AML as I probably should be but probably should have known that since I keep seeing articles on Twitter about cardio-oncology from hematologists. Cheers my friend!

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  2. So happy your mental state is feeling some blessed relief. I’m not a Trader Joe’s fan because I can’t ever figure out what they might have that I want that I can’t get at Whole Foods. But, well, now I’m paying attention. Can I/should I buy TJ’s stock? 🙂 CB

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    1. Thanks Cathie and sorry for the late reply. TJ’s isn’t publicly traded, and even were it I would probably avoid it. Specialty grocers are just a nasty bunch of stocks and your timing has to be excellent.

      The difference between TJ’s and Whole Foods is that WF is really a full grocery store — I don’t see TJ’s as trying to enter that space so much as just being a niche player (with like 460 stores or something). Usually organic, usually GMO-free and cheap. I just go there for snacks but I know a bunch of folks who shop there regularly. Then again they’re hipsters and should probably just be rounded up and forced to do something productive besides wear tight pants.

      Amy swears by their burrata, btw, which costs about 10% of what it does at Whole Paycheck.

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