Darza, Darza, Darza… I hope we’re going to be friends!
Infusion #2 today, Tuesday March 7, 2017
Yep, I survived last week’s Daralex’s Initial First (2 day) infusion and this first week of post infusion- “let’s see what happens”, and not too awful side effects :))
(See my previous 2 posts for these initial Darzalex details)
In prep for Darza Infusion #2 today, I took 20mg Dex roids Monday March 6 to begin the pre-med-ing and getting my body ready (or calm lol) for infusions. I then took the second 20mg Dex roids first thing in the morning, before leaving for my Dr appointment and infusion. I find having the Dex in my system in advance, really helps prevent infusion reactions. (I am still on the 40mg of Dex steroids per week, so splitting 20mg + 20mg seems to work really well.)
Darzalex is infused GRADUALLY and SLOWLY the very first time to prevent extreme side effect reactions. I’m still processing how impressed I am with my body’s minimal reaction, and I do attribute this to my, and the lab’s, pre-med-ing and careful monitoring. Infinite Thank you’s to my entire medical team!
DARZA INFUSION #2- SUCCESS UPDATE
BUT WAIT, THERE MORE! MORE TO THE MIX AGAIN!
So I arrived around 10:30am for my Dr appt with Dr P. We discussed my first Darza experience, my numbers, and noted that my CBC’s were up a bit. I attribute this to the 2 days (20mg + 20mg Dex roids lol), as my blood stats seem to increase when I premed with Dex and then take labs. We discussed how well I did with my first Darza infusion, with my “textbook reaction”, that was quickly controlled. Not to minimize it in any way, I just had thoroughly prepared and informed myself physically and mentally, so I knew what to expect, and act on immediately, before things got out of hand (see my previous posts for details).
Dr P then let me know she really wants to add Velcade or Pomalyst back in, as research and Darza protocol is all about doing “multiple agents” together… Ya, Ya, I know… but eekkk… I’ve barely gotten used to this “grueling” allll day infusion, not to mention possible crash side effects, and you all know I am not a fan of adding multiple treatments together until I know which is doing what, and what to expect from each. I know… I’m not the standard chemo patient… but ugh, after 7 years of this, QUALITY OF LIFE is important to me, and my Doctors know this. So back and forth we went, discussing all options. She is really concerned how Pomalyst brought my CBC’s to “Neutropenic” status, so we agreed to add Velcade back into the mix. But then she informed me that study and Rx protocol is Velcade adminstered on Darza infusion day and then 2 days later! Whhhaaattt…. noooooooo! Ugh! I don’t mind coming back, it’s just that I know I will be “crashing bad” on Thursday, and just don’t want to get on the freeway, not knowing how bad my symptoms will be, not to mention she and the chemo lab pharmacist let me know the Velcade Rx standard for this cocktail is higher than what I was receiving before. Ugh!! Back and forth we went, and I reluctantly agreed, as I know my IgA and M Protein and other MM stats are ridiculously high now… some back to 2009 diagnosis status! I know they have my best interests here, but I just need some semblance of “normalcy” at least for a few days per week. I’m not looking for a “magical cure” status, as I’ve always known myeloma is incurable. I just want the meds to give me lower numbers, and “stable disease” status.
So I “reluctantly” agreed to the new treatment plan, and off I went to premed with Benedryl and Tylenol, thinking let’s get that Darza juice into me and get to killing those waste of time cancer cells. As I waited for the premeds to settle in, I noticed 2 of my chemo lady pals across the room from me. One with myeloma, one with another cancer. Both such lovely ladies! Zoom, let’s go IV stand, time to chit-chat consult, as the myeloma lady was doing Darza also, and was a month ahead of me with her treatments. Long story short, she too was offered the Darza + Velcade (2x per week) + Dex, triplet cocktail. Oh boy, did we talk about that for a while. And talk, and laugh, and exchange stories about side effects, and life, and family, and myeloma’s ridiculous life changing limitations! This sweet lady let me know she had made the decision to NOT do the Velcade 2x per week, and only agreed to Velcade 1x per week with the Darza and Dex. The side effects were just too much for her. Oh boy… confirmation of my thoughts. I know, we’re all different, our myeloma is different… but dang it… I can only “suffer” so much in the process of treating this monster.
Can you guess what happened next?
Yep, as my Nurse continued to monitor me, increasing my IV flow from 50m/L to 100m/L… she brought over my Velcade shot, hung it on the IV stand for later and asked me about scheduling my 2nd shot for Thursday. Ok, ok, scheduled, I accept, scheduled in the system for Thursday. I’ll try to come back… ugh side effects… ugh higher dose… ugh my looming crash… ugh into the unknown again… ugh ugh ugh… Noooooooo! Nope! Not! I thought it, and said it… “I’m not going to do this!” Nope Nope Nope! Sorry studies and protocols, not going to do this yet. Dang it. Let’s wait to see how I respond to Darza, ONE Velcade shot and Dex. I just don’t like bombarding my system if it may not be necessary. I know, this is not what standard medical practice is. Hit it hard, slam those cells, wrangle in the cancer hard and fast. That’s the norm. Nope, Nope, Nope, I like to wait and see. See if lower dose, minimal meds can do the trick. So I shocked my sweet nurse with, “Sorry, please cancel Thursday’s 2nd infusion, I’m only going to do the one Velcade shot with the Darza on Tuesdays.” Take that myeloma! She was surprised, asked me several times if I was sure, and then cancelled Thursday for me. Yep, even though my Doctors and Pharmacists may “know what’s best for me medically”, they, fortunately have not experienced those yucky awful crash days us cancer patients do.
I accept the triplet concept. I really do. 3 different agents fighting myeloma’s unrelenting mutations. I get it, I really do. So let’s get this Velcade shot in. Let’s see how my system handles this new cocktail slam. Get er done. IV me up, shoot me up, let’s do this. Being a 7 year “myeloma veteran”, I have little vanity anymore in the chemo lab. I let my nurse “use me” to demonstrate to another another patient, “how to inject shots in to “belly fat”. We all laugh. I talk about what Dex steroids did to my body. I talk about how I am carefully counting calories now. I talk about how I am no longer saying, “F cancer, I’m going to eat whatever I want, whenever I want”.. I don’t want to be a chubby steroid cancer patient. Ok, some days I do still say “F cancer”, and eat a few extra ginger cookies or whatever my after chemo “metal mouth” craves lol. Velcade shot in, humor shared. This is my life.
As my chemo lab pharmacist was leaving for the day, I called out to him
and told him my decision about NOT doing Velcade 2x per week and cancelling my Thursday appointment, and he said, “Noooo way Julie, I’m just soooo shocked, so surprised”… “Not”!! … wink wink!! He knows me too well lol!! Omg so funny!! “Sorry to be so complicated Dr Henry”. “I’ll sign a “waiver” if need be, that I “changed” the standard protocol for this regimen”… lol, he laughs, “not necessary Julie”… “see you next week”.
The rest of my day went ok, chatting with other patients, sharing cancer diagnosis stories, life stories, and the forever feeling of being incredulous that we are in the circumstances we are. Patients came and went, and there I was, hour after hour after hour. Hourly increases of Darza flow from 50m/L to 100m/L to 150m/L to finally 200m/L. So far so good. Body is tolerating Darza fine today! Just tired, but wired. Dex and Benadryl battling it out, inside of me. Tried to dooze as some patients do, but can’t. Too many thoughts in my head, too much to think about, too much to process. The lab is clearing out. Only one or two patients left. I still have about an 2 inches left of Darza. The lab closes at 5pm. I feel bad for my nurse. I want her to go home on time. I tell her it’s ok to increase the flow. Let’s go Darza. It’s 5pm. She’s squeezing the bag. Just a little left. I’m doing fine. This is surreal. I’m the only one left in the lab. The other nurses leave, my nurse patiently stays and we chit chat. Darza’s almost done. It’s after 5:10, 5:15. Darza’s finally done! Switch bags. Get hydration in those veins. Lights out, everyone is gone. I’m exhausted, but so shocked I did so well. Finally, safe to go. My nurse confirms I am ok. Yes I am ok! Thank you sweet lady for caring as you do, and taking such amazing care of me! We walk out together. I apologize continually for how late things went. For sure next Tuesday’s infusion appointment will be earlier, as I don’t have a preceding Dr appointment.
I get to my car. I’m a little dizzy, ditzy, woozy. I should have let someone drive me there and back. But just my nature to not impose on anyone. I should. I’m a terminal cancer patient. I’ll be doing this drill forever. I keep thinking I won’t. I can’t accept this. What happened to me. This can’t be for real. This status will always be so unreal, surreal to me. I shake my head, trying to process. I drive carefully home. Fortunate for traffic today. Keeps the speed down. Focus Julie, focus. I’m thirsty, but don’t want to worry about “not making it home”. I’m a little nauseated… or am I hungry. That’s right, I only had a vanilla Ensure with my Dex steroids at 7:30am, then some graham crackers with my premeds at the lab, then water, and water with cranberry juice, and one fig bar. Am I hungry or nauseated? Ok, almost home. So much to process, so much to think about. Have I made the right decisions? Am I foolish for not following protocol? Should I be a typical, accepting cancer patient? When am I going to accept the “seriousness” and “aggressiveness” of my diagnosis? Nope, I need to be comfortable. I need to treat my body as I feel comfortable. I know my body. I respect the medical advice. Am I wrong for not treating per protocol? I arrive home. Relieved to be home. it’s after 6pm. I used to come from work around this time. How my life has changed. What happened to my life 7+ years ago. When will I wake up from this ridiculous nightmare.
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!