Darzalex Day 2 update:
I returned to the chemo lab bright and early on Wednesday March 1, pre-med'd with 8mg Dex steroids, which I took at home prior to leaving. I have found that pre-meding in advance of my chemo infusion appointments really helps get a head start on preventing treatment reactions. I did this with Kyprolis last year, and my recent Velcade shots this past month, and it was very successful in preventing any crazy infusion side effects.
Since I am taking 40mg of Dex per week, I usually split this dose between 2 days, but with this new adventure with Darzalex, I was advised to pre-med on Monday with 8mg Dex (the day before my first Darza infusion), then take 20mg before coming to the lab on Tuesday, Day 1 infusion day, then take 8mg Dex again on Day 2 infusion day, then end with another 8mg today, for a total of 44mg Dex this week. My body is exhausted, yet still buzzed, so I hope to eventually sleep well the next few days and just reeeeelaaaaaxxx and enjoy my infusion success!
I am thrilled to report that Day 2 of Darzalex was absolutely uneventful! After all the wondering and worrying I went through accepting this medication change, this experience went incredibly smooth. As you know, I read and inform myself continually about myeloma, treatments, medications, research, trials, etc, so I am very aware of what potential and possible side effects I may experience.
I would classify my Day 1 Darza infusion reaction as a "mini textbook reaction", that was handled expertly and immediately. As a result of proper pre-meding, my Nurses' quick responses, and the Pharma staff right there, next to the lab, I was able to get the predicted side effects under control quickly and move forward without much drama. Yes a bit scary at first, but I knew what was happening, and we dealt with it fast and expertly.
To recap, I first experienced face flushing, then a sudden somewhat intense headache, raspy voice, slight cough, slight difficulty breathing, and slight wheezing. I felt a bit weak, no energy to talk, as catching my breath was a bit difficult.
Since I previously had environmental and food allergies (which ironically completely disappeared after my 2010 stem cell transplant!), I was very familiar with the listed Darzalex potential respiratory side effects and knew what was happening as it was creeping up on me. I'm actually forgetting now, but I believe they gave me another bag of Benadryl, offered me Ativan and a Hydrocortisone shot (which I declined both, as I didn't feel my reaction was that dramatic), and most importantly, I suggested we just stop the infusion for a while and see what happens. Magic! Symptoms disappeared in about 30-40 minutes, and we resumed the drip at the slower rate of 50 mL/hour, then gradually increasing according to prescribing protocol of 50mL/hour of: 50, 100, 150, 200.
We stopped the speedy (200mL) rate infusion around 4:00pm, so I could be monitored before the lab closed at 5:00pm. I felt ok, of course exhausted from all the Benadryl, yet buzzed from the all the Dex steroids. Went home, felt ok, did not have any other reactions, other than tired, thirsty, a bit nauseated then hungry, a headache, but truly a very surprisingly uneventful evening.
Day 2 began with my 8mg Dex steroids I took at home before leaving for the lab, then the Benadryl drip, lower dose Tylenol (as I didn't feel like swallowing 2 pills so early in the morning and asked if I could use my low dose "meltaways" I brought, lol) and then the 30-45 minute wait to get those meds into my system. Then hello Big Bag of Darza, let's go! I was surprised how much was left in the bag from yesterday, as I had thought I received more. But with my early blood test repeat, the slight wait for those results, the standard premed wait, and the reaction wait, I guess I didn't "drink" as much Darza as I had thought I did on Tuesday, Day 1.
I don't want to "jinx" myself, but things went great Day 2 and I went thru the remainder of the Darza bag at full speed ahead, with NO DRAMA, no reactions, no side effects! I moved through the various infusion rates of 50, 100, 150, 200 quickly, with NO reaction. I was truly shocked how well I was doing, and how quickly my bag emptied at the turbo rate of 200mL/hour!
I always wind up meeting a fellow chemo patient and chatting the time away, so I can't report as many exact details of my infusion experience, as we were busy talking about our respective cancer types, treatments and life changes. Sadly, this nice lady I was next to, wound up with a lousy reaction to her chemo, and I was not paying as much attention my situation as I was with hers. She was having a lot of difficulty, and I quickly summoned the nurses for her. She wound up needing oxygen, various shots, different IV bags, and went from feeling ok earlier to really crashing. I felt so bad for her, especially since I was doing so well, and had expected I would be the "drama queen".
So that's my undramatic, dramatic Darzalex story! Can you believe it?! What have I learned from this? Well the same lesson I muse about here often, regarding each medication change I've made lol. I thoroughly inform myself of the details and possible "worst case scenarios" so I am fully aware of "what could possibly happen", but I tend not panic that the worst will actually happen to me, and it often doesn't :))
I was thinking about it earlier, how many different myeloma meds I've done:
~ Revlimid, at 5mg, 10mg, 15mg, for initial treatment prior to SCT
~ Dexamethasone, from the low of 10mg weekly, to as much as 40mg per day, 4 days on, 4 days off
~ Cytoxan- IV, one intense all day dose in prep for stem cell harvest (and this one I did get terribly sick from, which scared me for all the others. It was like having the 24 hour intestinal bug)
~ Neupogen, to build up the stemmies prior to harvest
~ Melphalan, 2 days, high dose, prior to stem cell infusion at City of Hope July 2010
~ Revlimid, low dose 5mg for remission maintenance, 18 months
~ Revlimid, 5mg, 10mg, 15mg after coming out of remission mid 2013, until late 2015
~ Kyprolis, standard dose, late 2015 thru late 2016
~ Pomalyst 3mg, 4mg, just recently, Nov 2016 - Feb 2017
~ Velcade, standard dose, just recently, mid Jan 2017 - Feb 2017
~ And now Darzalex!
Whew that's a lot of meds... not mention all the other supportive ones such as Mepron, Iron, Acyclovir, Aspirin, Benadryl, pain meds, stomach upset meds, GI issue meds, lol, etc... And to think prior to my myeloma diagnosis, I hardly took any meds... wow...
So that's my story and I am still shocked and surprised, not to mention so grateful, with my Darzalex infusion success.
I almost forgot to mention, that at the end of Day 2 infusion I asked if my recent myeloma marker labs had come in, and sure enough, they just had! I was shocked to find out that in the 2 weeks off Pomalyst and Velcade, prior to starting Darza, my IgA shot up from 3270 to 3750 and my M Protein went from 2.71 to 3.60! Wowza!! Ok, I am convinced my myeloma is "aggressive", as my Doctors have been telling me all along... Get in there Darza and do your magic!
So glad you weathered this week well, especially being able to focus on someone else's struggle over your own. That can be healing. I love the helmet mouse clip!ReplyDelete
Another acronym explanation for F.E.A.R. is:
Stay positive, cherish what you do have and seek what God wants you to do with the rest of your life. No one is guaranteed tomorrow.
Hi Janette! Thank you for checking in and letting me know you read my posts :)) I really like your FEAR list too! Yes, no guarantees for anything for any of us. Hope you are doing well, and thank you for commenting :))Delete
You are brave!!! I'd be scared sh#@* less. I'm so glad the reaction was monitored and small relative to what it can be. i hope your numbers come down quickly. Best to you....
Hi Christina, yes I sure was scared s#!+less at first! I tend to overread and overreact, then do just fine lol. It's been quite a journey, and I've learned so much about various meds, and combining meds, and the reax to "triplet cocktails", etc. But so thankful that all this is coming together and pummeling MM.Delete
I am so happy to read and follow your amazing journey too! What a successful ride you have had, and I hope you continue to be medication free for a long time girlfriend! xoxo