D is for... too much toDay

3.27.17

And just when we think we can predict...
Ha Ha laughs life...

Got up early, took some Dex steroids, as that's what I have done to begin pre-meding for Tuesday's Darza infusions. I haven't had any relief all week from the ouchy fever-feeling nerve pain. I just feel awful. My thinking: Dex to the rescue! No I haven't been actually "sick", thank goodness! My body just feels sick, like when one has a fever. Ouchy skin. And the fatigue. Ugh the fatigue. I just feel sick all the time now, but I am not sick. Not flu sick. Not stomach flu sick. Not sinus-cold sick. Just tired, fatigued, ouchy fever sick, WITHOUT the fever. Yippee Dex steroids to the rescue.

Got up, took 4 little pills with a Vanilla Ensure, and water, and was going to go back to sleep for an hour. I knew I didn't have much time this morning, as I was due downtown at 11:00 for my SCT Dr appointment.  I just wanted the roids to kick in, and make my achyness disappear. And then it happened. My stomach started rumbling like it hasn't rumbled in a long long time. Hmmm, what's this feeling I mused. Pomalyst, are you becoming my Revlimid? Are we going to have GI adventures again? Will I be prevented from going places due to crazy unpredictable diarrhea? Deja Vu 2013, 2014, 2015? No, all is well, false alarm. I still have a bit of time to "relax" before getting up and leaving.

Oh, yea... surprise, surprise: Hello GI issues again. Hello diarrhea that prevents me from leaving the house, getting on the freeway and getting to my Dr appointment. Ha Ha, laughs life: "You'll never be able to predict much of anything ever again", laughs life at me, while I'm in the bathroom, wondering what the heck. Later, I call my Dr's office and let them know my situation. I'm offered a phone consult appointment, which I was very happy to accept. I really do have the best care!

Dr S and I discussed my labs, new treatments, new meds, new ouchy side effects, etc. We discussed "quality of life" issues. We discussed my options. We discussed Velcade vs Pomalyst with Darzalex, Dex. Who knows which is causing what. Perhaps, with all the side effects, Dr S suggests: "try stretching out Dex AFTER the Darza infusions"... "Maybe not take it day before infusions, but utilize the 40mg dose over more days, since the Dex seems to really help alleviate these new"... awful, painful, debilitating side effects... we discuss back and forth. Done Deal! I'll talk to my chemo lab pharmacists tomorrow and my local Dr.

Dex took it's sweet time kicking in, and still really hasn't given me the "kick" I'm used to, but the awful pain has now subsided. I think Dex will be the Darza side effect minimizer. I was slow to do much of anything today, due to incredible fatigue. I had to "force" myself off the couch and outside to move a bit, and I finally ate a baked potato and then left late for the lab for my blood tests. Everything is an effort lately. Not the Julie I know... This has got to change... I'm not an inside couch lounger.
When I have these lab results I will post them (look for an update April 1). But thankfully, it does look like Darza is effective at wrapping it's self cellularly into and onto myeloma, slamming myeloma's power! I have committed to "suffering", if Darza is my new Elixir. I'll figure out a way to "med up", "drug up", meditate, "ignore it", etc, and make this work. Myeloma, you have ruined my life, but I am forever grateful for this life I have...

Not long after my Dr phone consult, I found out another one of my myeloma friends passed away today. So shocking. I had met Lisa and her husband late last year at the chemo lab. She was somewhat newly diagnosed. June or July 2016, I think. I told them my story and my successes. I gave them hope and tips. She had many complications, had been in and out of the hospital, had to do dialysis, but they were very optimistic and looking forward to getting to and beyond the SCT process. She had many success milestones. She made it to City of Hope for her SCT. Today was 11 days after her SCT infusion. I don't know what happened. But I do know my heart is broken for her family. For her husband and young adult children. So incredibly sad. I just don't understand. I will never understand "Why Bad Things Happen to Good People"... Why Myeloma, Why?


D is for Darzalex side effect surprises
D is for Dex steroids to the rescue
D is for Done Deal, I'll Do it
D is for Deja Vu Diarrhea
D is for Dang, really, here we go again
D is for Dr appointment missed
D is for Dizzy and Ditzy
D is for Dex steroids Bipolar life 
D is for Done with all this insanity
D is for the tragic Death of a myeloma friend toDay

Look for my new lab tests update on April 1. No April's fools joke coming :))

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

Thanks Darza- 4 days later... I still feel Yucky, and You're Sabotaging my Party

3.25.17

Dear Darzalex,

Thank you for improving my myeloma status, and pummeling those invasive no-good cells, but what's going on here?! Each day since Infusion-Day-Tuesday, I have felt yuckier and yuckier... I feel "flu-ish", achy, so extremely fatigued, tired, headachy, dizzy, blurry and so incredibly ouchy, without relief or a break. I thought Velcade was "the" culprit, and kicked that treatment outta my life last week.

But Darza, perhaps Velcade is only partially responsible for my "misery", maybe exacerbating your side effects? Maybe the ouchy nerve pain is really you Darza, afterall? Maybe you are the cause of all these yucky side effects? Guess I underestimated your powers. I don't have the extreme debilitating, burning nerve pain from earlier in the month, but these current super ouchy-achy-flu-like symptoms are just doing me in. Is this you Darza? Or Velcade's delayed 2nd life? Or is this you Pomalyst, after just a few pills? I know the power of killing myeloma is in the multiple "agents" combined together, but this "torture" supports my previous rants about being on one chemo/immunotherapy at a time, so I can isolate which side effects are from what. I meet with my SCT Dr on Monday March 27, so we'll see what his take is on all of this is...
C'mon myeloma, can't you cut me a break... it's my son's birthday today.

Happy Happy Birthday to my amazing son Scott! 

Throwback to better times...

=====================

What are the possible side effects of DARZALEX^®?

DARZALEX^® may cause serious reactions, including:

• Infusion reactions. Infusion reactions are common with DARZALEX^® and can be severe. Your healthcare provider may temporarily stop your infusion or completely stop treatment with DARZALEX^® if you have infusion reactions. Tell your healthcare provider right away if you get any of the following symptoms:
  • shortness of breath or trouble breathing
  • dizziness or lightheadedness (hypotension)
  • cough
  • wheezing
  • throat tightness
  • runny or stuffy nose
  • headache
  • itching
  • nausea
  • vomiting
  • chills
  • fever
• Changes in blood tests. DARZALEX^® can affect the results of blood tests to match your blood type. These changes can last for up to 6 months after your final dose of DARZALEX^®. Your healthcare provider will do blood tests to match your blood type before you start treatment with DARZALEX^®. Tell all of your healthcare providers that you are being treated with DARZALEX^® before receiving blood transfusions.
• Decreases in blood cell counts. DARZALEX^® can decrease white blood cell counts which help fight infections and blood cells called platelets which help to clot blood. Tell your healthcare provider if you develop fever or have signs of bruising or bleeding.

The most common side effects of DARZALEX^® include:

• tiredness
• nausea
• diarrhea
• shortness of breath
• fever
• cough
• muscle spasms
• back pain
• cold-like symptoms (upper respiratory infection)
• nerve damage causing tingling, numbness or pain
• swollen hands, ankles or feet

Tell your healthcare provider if you have any side effect that bothers you or that does not go away.
These are not all the possible side effects of DARZALEX^®. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

General information about the safe and effective use of DARZALEX^®

======================

Or is it you POMALYST?

POMALYST can cause serious side effects, including:

• Low white blood cells (neutropenia), low platelets (thrombocytopenia), and low red blood cells (anemia) are common with POMALYST, but can also be serious. You may need a blood transfusion or certain medicines if your blood counts drop too low. Your blood counts should be checked by your healthcare provider (HCP) weekly for the first 8 weeks of treatment and monthly after that.
• Severe liver problems, including liver failure and death. Your HCP should do blood tests to check your liver function during your treatment with POMALYST. Tell your HCP right away if you develop any of the following symptoms:
  • Yellowing of your skin or the white parts of your eyes (jaundice)
  • Dark or brown (tea-colored) urine
  • Pain on the upper right side of your stomach area (abdomen)
  • Bleeding or bruising more easily than normal
  • Feeling very tired
• Severe allergic and skin reactions. Call your HCP if you have any symptoms of an allergic reaction, including: swelling of your lips, mouth, tongue, or throat; trouble breathing; or skin reaction.
• Dizziness and confusion. Avoid taking other medicines that may cause dizziness and confusion during treatment with POMALYST. Avoid situations that require you to be alert until you know how POMALYST affects you.
• Nerve damage. Stop taking POMALYST and call your HCP if you develop numbness, tingling, pain, or a burning sensation in your hands, legs, or feet.
• New cancers (malignancies). New cancers, including certain blood cancers (acute myelogeneous leukemia or AML) have been seen in people who received POMALYST. Talk with your HCP about your risk.
• Tumor Lysis Syndrome (TLS). TLS is caused by the fast breakdown of cancer cells. TLS can cause kidney failure and the need for dialysis treatment, abnormal heart rhythm, seizure, and sometimes death. Your healthcare provider may do blood tests to check you for TLS.
• The most common side effects of POMALYST include tiredness, weakness, constipation, nausea, diarrhea, shortness of breath, upper respiratory tract infection, back pain, and fever.
• These are not all the possible side effects of POMALYST. Your HCP may tell you to stop taking POMALYST if you develop certain serious side effects during treatment. Call your HCP for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

What other important information should I know?

• Blood clots in your arteries, veins, and lungs, heart attack, and stroke can happen if you take POMALYST. Most people who take POMALYST will also take a blood thinner medicine to help prevent blood clots.

Before taking POMALYST, tell your healthcare provider:

• If you have had a blood clot in the past
• If you have high blood pressure, smoke, or if you have been told you have a high level of fat in your blood (hyperlipidemia)
• About all the medicines you take. Certain other medicines can also increase your risk for blood clots

Call your healthcare provider or get medical help right away if you get any of the following during treatment with POMALYST:

• Signs or symptoms of a blood clot in the lung, arm, or leg may include: shortness of breath, chest pain, or arm or leg swelling
• Signs or symptoms of a heart attack may include: chest pain that may spread to the arms, neck, jaw, back, or stomach area (abdomen), feeling sweaty, shortness of breath, feeling sick or vomiting
• Signs or symptoms of stroke may include: sudden numbness or weakness, especially on one side of the body, severe headache or confusion, or problems with vision, speech, or balance

===================

I just can't tell if I am getting better or worse. These side effects are really throwing me a curve. And to think I "complained" for years about the "volcanic, surprise" diarrhea from Revlimid. What's that ole saying... "be careful what you wish for"!

Happy Birthday to my amazing son!

We were just so cute back then! 

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

Good News! Darza Dominates!

3.22.17

Looks like Darzalex (with Dex, Velcade) is doing it's job and pummeling myeloma!
(Mayo Clinic Recommendations for Myeloma Therapy at Relapse)

Just saw my IgA and M Protein levels! 

UNBELIEVABLE!!!

M Protein was 3.60

Now: 1.35

Normal range = Zero

====================

IgA was 3750

Now: 1770

Normal range = 70-400

So here's the quick story: 

Tuesday March 21 was Darzalex infusion #4.

I let my Dr and Chemo Pharmacist know I just couldn't do the Velcade shots anymore, if Velcade was the culprit causing me the horrific "nerve pain" I was attacked by this month. It's a full body super ouchy painful feverish feeling, like knives stabbing me, nails scraping my skin, pain like a very high fever, but without a fever. Went on for days and days and days. So we agreed to nix Velcade and try Pomalyst again, but at the 3mg dose, hoping it won't bring my CBC's to Neutropenic levels again. 

BUT- that ^ conversation ^ was PRIOR to seeing my recently resulted M-Protein and IgA levels! They just came in today. So now that we can see the AMAZING RESULTS... I (think) I would be willing to suffer through Velcade, if Pomalyst doesn't show the same great downward results. But we won't know that for another month, as I'll begin Pom tomorrow. But at least we do know Dex, Darza and Velcade does work for me.
I am just so relieved that these meds and my body are currently stronger than the myeloma cells attacking! Yippeee ... my spirits are renewed and I am back to feeling my positive optimistic, hopeful self again... at least for now...

HAPPY dance song!!!

Click here for an informative Darzalex video with Dr Durie!

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

 

Forward March Darza, Velcade, Dex

Hello 3.17.17
Here's my story in pictures.

 

Some days yes, most days no...
I used to be so "strong",
but I find continual "pain" debilitating...

So many more diagnosed every day!
Just met another local to me...
Where are you coming from Myeloma?

Forward March Tuesdays-
Hello 40mg Dex steroids, bag of Darzalex, bag of Benadryl, Velcade shot

These are great when I get tired of swallowing pills-

Helps calm chemo reactions, and so amazing-
I have ZERO environmental/food allergies
since my July 2010 SCT!

5 hour Darzalex infusions-

So far so good, thank you premeds

and a fantastic chemo lab staff for smooth sailing

Jr strength used to work out ok... 

But these days-

I need to be an "Adult" and up the dose 

with Adult strength pills, 

as there's a new side effect in town...

Several weeks ago, Velcade sent me AWFUL, OVERWHELMING NERVE PAIN! 

Different than the typical numbness and tingling from traditional Neuropathy..

Hit me 2nd Velcade Darza infusion- 

Just unbearable pain like I've never experienced

Feels like a PAINFUL skin fever, sunburn or raw skin.

It's a high fever feeling, but without the actual fever. 

It's the flu feeling without the flu.

Burning sensitive ouchy skin, inside and out.

Clothes feel like needles

My bed is like sleeping on nails

So awful, so debilitating :'(( 

Stealing my precious time away, 

Draining my optimism and strength,

Stealing my days away,

Stealing my life away,

Making me question everything... 

Then fortunately,

Whew! Mondays and Tuesdays Dex to the rescue!

I take 40mg per week,
20mg Mon, 20mg Tues

as premeds for Tuesday infusions 

and finally, some overall relief.
It's amazing to feel a bit like my ol self again.
What a crazy, amazing medication...

------
And on a happier note:
last Tuesday after infusion-
before my crash- 

Alissa brought us this,
Thank you Dex for a day or two of semi normalcy.

Not often though, as I'm back to counting calories-

I'm not going to let 

Dex steroids make me chubby! 

Me on the one good day

I'll take labs soon (when the nerve pain calms down and I can breathe and function). Truly, dealing with this new side effect is overwhelming me. I'm not used to 24 7 pain. I'm not used to feeling so awful, so "sick", for most days a week, every week, every month... Seriously, imagine feeling sick weekly and knowing in advance you will feel sick weekly... so awful. But I endure, as it will be interesting to see how this new cocktail of Darzalex, Velcade and Dexamethasone is attacking myeloma. Trying to tolerate the nerve pain torture, in hopes the meds are pummeling the cancer cells... if not... what's next?? ...
I don't think I can do this...

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

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!  

Darzalex Day 2!

3.2.2017

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!