Go Steroids, Velcade, Cytoxan! Some Good News for a Change

Hello 2.19.19

I refer to my crazy Mondays now as “Medication Madness Monday”, so this post comes a day after my weekly cocktail of 40mg of Dex steroids, Velcade shot, and 8 Cytoxan-Cyclophosphamide pills, and my February monthly status Dr appointment. I began this post around midnight last night, still hyped up and jolly on steroids, and planned to continue a lively, positive, good news update later today, but sadly today went from what should have been a quick Dr appt to an all day traffic nightmare…

Yes, the day, and this post update, is a wash, as it became a caregiving day for my hubby with Dr appts, etc, for him. We got caught up in a horrible freeway backup, accident, fatality situation, that caused a nightmare traffic jam on our local freeways and local streets. After inching along for hours, I finally decided to make a U turn (like so many others), as our route was going nowhere at 2 miles an hour… I was parched, hungry and felt lousier and lousier by the moment, as Tuesday begins my Dex and overall medication crash. Luckily, earlier, I went with my myeloma intuition, and didn’t eat or drink anything before leaving the house- (not healthy, but necessary). As I’ve mentioned so many times here, and told so many stories of “near misses”, I do not eat, or drink before I go anywhere, so there’s little chance of a “biological emergency” on the freeway. And wow, was today a perfect example of why I do that! As we sat in sloth style crawling traffic, I couldn’t help but think of all the potential emergencies people could be having in their cars, stuck on the freeway and side streets. Just awful. Been there, done that with way too many “volcanic biological emergencies”, over the 9 years of myeloma treatment. I never want to experience an angry, desperate GI system while stuck in a car ever again!

So after crawling along getting no where, breathing car exhaust fumes, and fearing I might run out of gas, I realized we could be caught in this nightmare for hours. Thankfully, that U turn brought me by a gas station. While there, I also considered using the restroom, but really didn’t want to, as I avoid public germy places as much as I can. Ironically, (and I was glad), it was “out of service”. Clear message, right, to Stay out! But also not good to hold my pee, as my Dr told me Cytoxan-Cyclophosphamide is hard on the bladder and kidneys…. so here I am not hydrating and not peeing. Just great for my poor body on day 2 of treatment medications, when they’re revving up the most!

Meanwhile the traffic was only getting worse, as the late afternoon, evening commute had begun, so I just gave up trying to get home, and decided we’d go out to eat while the traffic chaos died down. The irony was we were right across the street from where we had our wedding reception, a zillion years ago, so that became our dinner destination. Ah, this life and all it’s crazy twists and turns! So here I am trying to update this post at 9:30pm, going on 10pm going on 11pm, going on 12am… exhausted mentally and physically, so this will have to suffice for my 2.19.19 update, which was going to be newsy and funny. But I’m just too beat up to upload screenshots of my recent labs, and write in detail about my news. Crazy what a difference a day makes with Dex! Yesterday I was so peppy and energized and funny… today… drained, frustrated, and not so funny and fun anymore, as the sad circumstances of my husband’s situation, and the impact on him, me, and us as a couple weighs heavy on me today…

Here are the headlines of what I had planned to show and tell you:

IGA = 2000 in Nov, now 1230 (normal 70-400)
M Protein = 2.19 in Nov, now 1.01 (normal = 0)
Beta2Microgloblin = 2.9 in Sept, now 2.1 (normal below 1.8)
Light Chains = subnormal
CBCs not bad, Not Neutropenic!
Body organ stats good considering 9 years of chemo battering!- this amazes me!

Also wanted to mention a Weird change of my Velcade shot today. Normally I receive 1 injection for 1.59mg/ml, but today my dose came as 2 shots. At first I was alarmed and thought I was getting a double dose, but the nurse checked and rechecked, and we confirmed that it was the same dose, but the pharmacy sent it as 2 injections, or 2 needle sticks. Hmmmm, never had this offered like this before. We had another nurse come over for consultation too, and everyone said it can be done either way. Turns out the concern is injecting too much SubQ into one area. So it is often divided up into 2 spots. For those of you familiar with Velcade, what is your experience with injections?

Up to now, I have the injections in my lower stomach, or my “jelly-belly” as I affectionately call that area :)) We alternate L and R sides each week, but it has only been one injection stick, not 2. The nurses often assume in the arm, but I have never done it there. So far, I do not have any new side effects from 2 sticks, perhaps a little less irritation, as was suggested by the nurses. Just checked. Yep, 2 red spots, not 1. But I don’t have any itching or pain… yet… When I began Velcade, some injection sites actually turned to bruises. Some super itchy. Some painful. So far, most importantly, very little Neuropathy! Thank goodness for that gift!

Life continues to be a crazy roller coaster with my hubby’s Alzheimer’s decline… decisions, decisions… ugh… so tragic on all levels…

Rain, Rain, Rain = Muck, Muck, Muck here… cold, cold, cold… done with Winter, thank you!

And I can’t help thinking… What’s next after this triplet, when I become refractory to it… when myeloma outsmarts the chemicals trying to outsmart myeloma… next up clinical trials??? Clinical Trials Scare Me… as you know, I like some semblance of control over dosage, and you can’t chose your dose in Trials! Well, one day at a time, one challenge at a time, one crazy life adventure at a time. Cheers to surviving all I have, on so many levels, and you to, for all you have dealt with in your lives. So many challenges, on so many levels for everyone! But again, I’m always always so very very grateful for my amazing Insurance, my family, friends, and all the good that has been in my life!

Here’s a walk, rather a read, down memory lane of my posts this time (February), of previous years:









Such an evolution of self, and this blog! Yet, how much the same things are!