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Thursday, March 2, 2017

Darzalex Day 2!


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.

Note I was in bed "F" lol :))

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!

Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!  



  1. 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!

    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.


    1. 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 :))

  2. Hi Julie,
    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....

    1. 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.
      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


My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!

What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)


Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.