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Tuesday, March 7, 2017

Ok Darza Infusion #2...I'm Coming for You

3.7.17  
(UPDATED 3.8.17)

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

2 comments:

  1. Julie,
    Your words are so powerful and real. So glad your body accepted the dara this week. This article was in our local paper. Now, I don't think you or I are any where close to dying, but parts of it really hit home.

    http://www.desmoinesregister.com/story/news/local/columnists/daniel-finney/2017/03/04/iowas-first-hospice-nurse-dying-she-wrote-book-her-final-days/98650526/

    I remember driving my self to and from treatments when I was so tired..because I didn't want to bother anyone, especially my family that was already carrying such an extra load with me being sick and not able to my work on the farm. Doesn't it tick us off that cancer takes our energy and our time. Still trying to squeeze as much living as I can before I need the same treatment. Took the horses and trail rode for 5 days, rode 17 hours of beautiful trails through forest and streams in southern Missouri. I will dream of those rides when I have to sit in that damn chemo chair again.

    I am so praying dara can bring back some energy for you like it has others with better blood counts.

    Take care friend,
    JC

    ReplyDelete
    Replies
    1. Thanks for this Jan! So much to process in our circumstances. It's amazing what so many of us can handle. I will look into this woman's book, as the article about her journey is so poignant. Side effects are diff each day, week.. I just keep thinking I'll be ok, and when I'm not, I'm surprised. So silly after 7 yrs. I am sooooo happy you are able to ride so much! I love hearing of your adventures and ride vicariously with you. Take more pictures so I can see where you ride :)) Thanks for being such a supportive pal Jan! xoxo

      Delete

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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.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?”)

Infections

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.