Darzalex Day ONE!

Tuesday, March 28, 2017
Here we gooooo! It's Darza game time! Here's my quickie update:

Funny let's get to the chemo lab on time story-
As my personal "Uber" driver son Scott was taking me this morning to my Darza appointment, he switched safely, but illegally, into the carpool lane, cutting over the double line. (Insert mom lecture here.) Minutes later, a CHP with full lights blaring comes roaring up fast behind us, but back a bit, giving Scott time to quickly get out of the HOV lane, and time to dart (safely and evasively) into other lanes. (Insert another mom lecture here!) Omg, we're "dying" laughing here, and I'm reprimanding my 30yr old son! We're thinking Scott's going to get a ticket for an illegal lane change, not to mention, we're going to be late to my appointment. Here goes the beginning of my Darza drama day, and we've barely left the house.
We're both "dying" laughing and cussing, as he's darting in and out of lanes, trying to ditch the CHP! But thank goodness, it turns out Mr. CHP could care less about us, buzzing right past us, towards an accident on the overpass, not after Scott!! We're so relieved he wasn't after Scott, but now we're going to be late to my first appointment from this accident closure in front of us! Seriously! Can't believe this! Turns out, Mr CHP was headed to the EMS activity in the carpool lane, the lane Scott had quickly gotten out of, so we were safe, and not involved in the freeway closure! What a crazy, "I'm going to kill you son" start to the day!

But wait, there's more!
We finally arrive at the chemo lab, check in, meet with my Dr, discuss the plan and my blood tests, then boom! she tells me my WBCs are too low to start today's Darzalex infusion! Omg! Seriously! All this mental prep, and now to be sent home?!?!?! Nooooo!!! Down to the lab I go. New blood tests STAT!! ... Back to the chemo lab to wait and wonder if my levels are better and I can finally move forward. Soon, Stat labs in, and it's a GO, as my CBCs have risen (thank you Dex Roids for pumping me up!)

But wait, there's more!
First needle stick, into a dead vein from so many previous Kyprolis IVs, and I am a bit dehydrated, as I hardly had a chance to hydrate, leaving the house so early for this allllll day infusion! Omg life, seriously?! But 2nd needle stick, different hand, good to go! ... Finally hooked up, pre-meding with MORE Roids, Benadryl, and Tylenol. (I had previously taken 8mg Dex steroids on Monday, and 20mg Dex this morning at home.) Now it's hurry up and wait for the meds to take affect. Before we know it, it's Darzalex go time!! Premed'd up, and hello Darza into my veins. This life never ceases to entertain me. As one of my friend's posted, my life "Mr Toad's Wild Ride". Yep!
Per Darza infusion prescribing literature, the worst reactions, if they happen, occur about 2-4 hours in.
 
And sure enough, as predicted, like clockwork, the infamous Darza reaction creeps up on me:

Darza was infused at standard protocol. Scott and Ashley were my "reaction monitors" for the first half of the day. Initially, all seemed rather uneventful, so I told Scott he could run his business errands, and Ashley would stay and monitor me.

But not long after he left, about an hour and half, 2 hours of Darza, here comes the reaction just like clockwork. I'm just such a textbook patient. The predicted reaction of chills, cough, headache, scratchy throat, flushed face, body aches, sneezing, sore throat, wheezing, and I felt blah, no energy to talk and felt overall weird. The reaction crept in, one side effect at a time. I let it ride for a bit to see what direction it would go, but Ashley summoned my nurse, as I knew the predicted Darza reaction was happening! I've had some asthma and allergies all my life prior to my stem cell transplant, so I know the early signs. The nurse took my vitals, listened to my wheezy breathing and we stopped the drip for 30-40 min. They offered me a various meds to treat the side effects, but I didn't think I was that bad off, and wanted to see what would happen if the Darza drip was just turned off for a bit.

Sure enough, that did the trick and we started back after my reactions subsided. We did a graduated slow drip, medium drip and then full drip. I think the rates are 50, 100, 150, 200. And after the no-Darza break, I surprisingly did just fine! We did the final hour at the speedy 200 rate! My 90 year old, very healthy I must add Dad, stopped by too, then they all left for work. Second shift "reaction monitor" daughter Alissa came, and thank goodness the rest of the infusion to 4:30 was slightly uneventful, at full speed ahead. Yippee!! I didn't get through much of the bag, so we'll see what happens tomorrow...

So what's my final status today: Tired, achy, headachy, woozy, soon snoozey, a tiny bit of nausea, but relatively ok. I was too medicated to drive home myself as predicted, but honestly, I was in such good shape compared to what I had anticipated. So proud of my body today! If that's all Darza sends my way..... I'm in love with you Darza! (And look at this, I'm in bed "F" aahahhaa!)

So it's back to the chemo lab tomorrow to finish the rest of the bag, as I only got through less then  half.  So.Same.Show.Tomorrow.  I'll premed again with 8mg Dex roids, and then med up more there, before the Darza infusion begins. I totally trust my chemo lab staff and so appreciate all their attentive care! Nurses and Pharmacists right there for everything and anything. Doesn't get better than that!

Thank you so very much for all your support, concern, cool comments, and healing prayers!

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

 

Hello Darzalex, Please Be My Friend

2.27.17

Wellllllllllll... here we go...
The long awaited treatment change to Darzalex is looming tomorrow, Tuesday, February 28, 2017, first thing in the morning!

My hope is for NO side effect DRAMA on this first infusion.

For those familiar with Darza, you KNOW what I am referring to.
For those unfamiliar with Darza, truth is, many (most) myeloma patients experience some sort of "first infusion" reaction, above and beyond the "normal" reaction one has to (other) new chemos. When switching treatments (which has happened more times than I can count now!), I read read read and consult 24/7 about the new medication, treatment details, possible consequences, etc., so I know what I am getting into. I may not fully understand all Darza's bio-chemistry, but at least I won't be surprised if I do have an initial infusion reaction. 

Am I scared? No. Am I nervous? No. Am I anxious? Yes... Anxious to just get this first infusion over and done with. Anxious to know if this treatment will lasso my escalating IgA and M Protein. Anxious to find out if I can be back on the winning side for change. Anxious to be ok for a little bit, if possible. Anxious for a bit of potential "normalcy" in my life, if Darza and I become friends

See Revlimid Dex was challenging regarding GI side effects, but totally worth it prior to SCT (2010), after SCT (2010-2012), then after coming out of remission (2013), until mid 2015. Then Kyprolis Dex gave me at least 9 months, from late 2015 to mid 2016. Then recently Dex, Pomalyst and Velcade, unfortunately barely made a dent. Then actually made a tiny dent, but my Dr and I decided to toss Pom and Velcade aside and go for the new big dog, Darzalex.

So hello to allll day, 8+ hour "slo-mo" infusions Tuesday Feb 28 and Wednesday March 1. The 8+ hour, all day, slow infusion rate is the norm, to help prevent side effects. And if there are side effects, the infusion is stopped, reaction-targeted meds administered, and hopefully, onward I can go. We'll see what happens!

And what are those intense, serious, potential first infusion side effects? 

DARZALEX^® (daratumumab) Important Safety Information – Professional

WARNINGS AND PRECAUTIONS
Infusion Reactions - DARZALEX can cause severe infusion reactions. Approximately half of all patients experienced a reaction, most during the first infusion. Infusion reactions can also occur with subsequent infusions. Nearly all reactions occurred during infusion or within 4 hours of completing an infusion. Prior to the introduction of post-infusion medication in clinical trials, infusion reactions occurred up to 48 hours after infusion. Severe reactions have occurred, including bronchospasm, hypoxia, dyspnea, and hypertension. Signs and symptoms may include respiratory symptoms, such as cough, wheezing, larynx and throat tightness and irritation, laryngeal edema, pulmonary edema, nasal congestion, and allergic rhinitis. Less common symptoms were hypotension, headache, rash, urticaria, pruritus, nausea, vomiting, and chills.
Pre-medicate patients with antihistamines, antipyretics and corticosteroids. Frequently monitor patients during the entire infusion. Interrupt infusion for reactions of any severity and institute medical management as needed. Permanently discontinue therapy for life-threatening (Grade 4) reactions. For patients with Grade 1, 2, or 3 reactions, reduce the infusion rate when re-starting the infusion.
To reduce the risk of delayed infusion reactions, administer oral corticosteroids to all patients the first and second day after all infusions. Patients with a history of obstructive pulmonary disorders may require additional post-infusion medications to manage respiratory complications. Consider prescribing short- and long-acting bronchodilators and inhaled corticosteroids for patients with obstructive pulmonary disorders.

Interference with Serological Testing - Daratumumab binds to CD38 on red blood cells (RBCs) and results in a positive Indirect Antiglobulin Test (Coombs test). Daratumumab-mediated positive indirect antiglobulin test may persist for up to 6 months after the last daratumumab infusion. Daratumumab bound to RBCs masks detection of antibodies to minor antigens in the patient’s serum. The determination of a patient’s ABO and Rh blood type are not impacted. Notify blood transfusion centers of this interference with serological testing and inform blood banks that a patient has received DARZALEX. Type and screen patients prior to starting DARZALEX.

Interference with Determination of Complete Response - Daratumumab is a human IgG kappa monoclonal antibody that can be detected on both, the serum protein electrophoresis (SPE) and immunofixation (IFE) assays used for the clinical monitoring of endogenous M-protein. This interference can impact the determination of complete response and of disease progression in some patients with IgG kappa myeloma protein.

Adverse Reactions - The most frequently reported adverse reactions (incidence ≥20%) were: fatigue, nausea, back pain, pyrexia, cough, and upper respiratory tract infection.
Serious adverse reactions were reported in 51 (33%) of patients. The most frequent serious adverse reactions were pneumonia (6%), general physical health deterioration (3%), and pyrexia (3%).

MMRF: Darzalez

IMF: Darzalex

So wish me luck and I do hope for the best, with minimal infusion reactions. Me, being me, and proactive as I am, I plan to Dex up Monday, the day before, with 8mg steroids (2 pills). Then Dex up early Tuesday with 20mg (5 pills), before even arriving for the infusion. I may even take some Benadryl in advance too, maybe some Claritin too. YES, all of this PRE-APPROVED by my Dr and chemo lab Pharmacists! I inquired about this at my last appointment, when we agreed to switch from Pom, Velcade to Darzalex. I know I am a "non-conformist" and a bit "rogue", but not stupid :)) I only do what is medical protocol. I will post an update as soon as I feel ok, to let you know how I did. Thank you in advance for caring as you do, all these years!

 How many doggies do you see?
Count the noses :))

Yep!! 

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

Stop This, Start That, Moving On

Hello 2.17.17

Ok Pomalyst, you're history for now, as you're affecting my CBCs in a terrible way and you're not really pummeling myeloma anyway. So GoodBye Pom. I'm Neutropenic, as my immune system apparently can't handle your "power". Dr P thinks Pom at 4mg is just too much for my fragile system right now. But I do wonder, being on this triplet cocktail, is it only the Pom doing this? Is Velcade a culprit too? And Dex? Of course they all are! See, this is why I have always preferred singular agents with Dex, so we can see which chemo does what to me, independently and individually. With combo cocktails, who knows which is doing what, right? Myeloma buddies, how do you sort all this out?

My appointment was full of information and lots to talk about and decide.

While looking at my recent labs, surprisingly my IgA and M Protein ACTUALLY CAME DOWN A BIT! But Dr P believes they are still way too high to continue another month status quo with Pomalyst, Velcade and Dex. I agree. Let's slam those myeloma cells, get the numbers down (hopefully), then talk about the next chapter. Ugh, I just don't like medication changes, and always hope beyond hope that I can get longevity mileage out a treatment regimen before tossing it out. But as they say, numbers don't lie, right...

 I think this drop is meaningful

 M Protein down a bit too

Dr P wants to begin Darzalex in a week or so (Feb 28), and she also suggested adding Ninlaro to the mix, with of course Dex. Can you guess my perspective on this... Yep, I said... well No! I prefer to begin a new chemo singularly, as I mentioned above, as I like to know which medication is causing what. And I think it's important to know if each agent is working independently. No I am not a Dr or chemist or medical researcher, just one who knows my body, and I am a "less is more" person, as I have mentioned a zillion times before on this blog :))

I agreed to begin Darzalex with Dex, and hold off on a third med. Let's see how I do on Darza, and if it is the "new wonder drug" many have indicated it is. We'll find out if it indeed does "wonders" for me as it has for others. Then we can add back Velcade, or Pom or Rev or try Ninlaro. Choices, choices, choices. OyVey!

But then, after processing and mulling alllllll this over, I began to think: "if my current cocktail is now making a dent... why CHANGE??" Oh, that's right, my numbers are really high lol, and also one of those beasts is dragging my immune system back to SCT hospitalization status. Ok, Darza here we come Feb 28.

I also consulted with the chemo specialty pharmacists right after my appointment and let them know what's happening (they know me well) and I quickly asked a zillion questions about the scary first infusion. "Should I premed with my regular dose Dex before I come?" "Should I bring my own inhaler for asthmatic reactions?" "Should I premed with anything else?" Well, yes, yes and yes they replied and suggested yes, premed with Dex, premed a few days before with Claritin, Zertex, Allegra, Benadryl, etc. I thought these were awesome suggestions, based upon what I have read the first infusion challenges are! Drug up Julie!

cancer-treatment/chemotherapy/oncolink-rx/daratumumab-darzalex-r

https://www.darzalexhcp.com

https://www.darzalex.com/

But I still wonder... should I stay on the current cocktail I'm on?? It is slightly working. Ugh, I hate you myeloma! Leave me alone and stop consuming my entire being and life!
So that's the plan man, and I get 10 days off Pom and Vel to hopefully boost my system back up. I took 20mg Dex prior to my appointment, as I didn't know I wouldn't be getting my weekly Velcade shot. I took my remaining 20mg Dex today. Yiippee, Dex me up you crazy 40mgs, buzz me up for 48 hours! But the type, length and intensity of my looming crash and side efffects is always a nasty surprise. It's worth it, as I felt pretty good yesterday and today, so who knows. Felt good, that is, for being sooooooo immune compromised. Good enough to get out in this huge rainstorm So Cal is experiencing:

 I'm such a rebellious cancer patient-

Here I am immune compromised and Neutropenic, 

but you can't keep me away from 

Nature and all her beauty and beast!

 Normally, this area is dust bowl dry, 

but at it's peak, this must have been over 7' 

of raging river!

 Logs, telephone poles, coverts, lumber, mini boulders

all went sailing by, like they were feathers!

Beneath this raging water

is normally a 5'+ drop off! 

Then add 2'+ more of water

Very intense!

Those pictures may not look dramatic, but our normally drought dry creek bed was a roaring flash flood river today! WOW! We were all over the news too. I took a lot of pictures and videos, got quite wet and so did my phone, so I had some delay in downloading and retrieving pictures. I will add more tomorrow, so check back.

 Oh yes, the fierce winds remodeled our corral roof! 

More like a sunshade or rain slide now!

So much seems to always happen, when I think so little will LOL. Such is life, and I am so very grateful to have this life, myeloma drama and all, as long as I can breathe deeply this life of surprises, love, beauty, laughter, unexpected excitement and beautiful people and places surrounding me!

And this happened to poor Jim a few days ago!

He slipped and fell on our tile entrance

where I had a towel from all the rain.

And that was before this BIG GIANT of a storm!

He's much better now! 

 

And then the next day this happened!

Our son Scott planned a fun and fancy date for all of us!

See Myeloma, you can't stop me from

living life in the "small" way I do :))

Thank you everyone for checking in and caring about my life, status and story as you do!

Here's an interesting SCT article. I always wondered how they "cleaned" our stemmies prior to the stem cell transplant! clinical-trial-cleaning-up-stem-cells-before-they-are-given-back-during-stem-cell-transplant/ 

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

No I Don't Love you Myeloma

2.14.17
Happy Valentine's Day-

C'mon Myeloma, show me a little love... I don't want to be your "sweetheart" host anymore! Can you please Stop loving me and my cells so much, and Start loving the chemo presents I'm sending your way. This is getting so ridiculous. Here's a quick snapshot of my life, as my Nurse and Dr have been calling and emailing me re my most recent labs. Hello Neutropenia.

My Dr suspects Pom is bringing my CBCs down too low, so time to stop Pomalyst. Only had 2 more doses left in the cycle anyway, so it's good bye Pom. More labs tomorrow, Wednesday, then consult appointment on Thursday. As I've mentioned, I haven't ever done a triplet cocktail before, so looks like Velcade, Pom and Dex are just too much for my fragile immune system. 3 is not a charm for me. Ugh, this is getting tiresome and worrisome.

And take a look at this one that just showed up. IgA and M Protein tests still "curing" in the lab.

Beta 2 Microglobulin results

And then...

After the recent storms here, this random and beautiful little surprise came my way just in time for Valentine's Day! The rushing creek sent a huge log past our property, and as the water subsided, it became stuck in the creekbed right behind us. And right along side the log, was this perfectly carved heart shaped rock. When wet, it's a beautiful dark color. As it's dried out, it's more of a dark grey pink granite. What a story it must have to tell. Think of all the years of tumbling and erosion that carved this heart shaped rock "just for me" :)) The big log too, had a heart shaped cut, where the tree had been previously cut. Wow, hearts surround me!

My kids always ask me "what I want"... "what would make me happy"... "what do I need"... "what can they do for me"... well, as they know, I'm a pretty satisfied, fulfilled, content person... so other than chemo working and myeloma back in control, I tell them I would love acres of green pastures to rescue horses and all types of animals, and I'd like one of  these too :)) 

Have a wonderful Valentine's Day with those you love,
and I will post my new plan on 2.17.17

Thank you for following, reading, and caring as you do! 

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

Thank You Dex Steroids for my weekly Fake Normalcy

2.11.17
Quick Update

It's a Dex Steroid life! But thank goodness for the fake weekly "pick me up"!

Thursday I began to feel better. Whew! Slight fever almost gone, all other symptoms not as intense, "headcold" symptoms subsiding, figured most everything was Velcade, Pomalyst, Dexamethsone related. By Friday, chemo appointment day, feeling almost ok! And of course, felt soooo much better after taking my 20mg Dex prior to my Velcade infusion.

Yes, it's been a month now of Velcade, Pom and Dex.
1st SubQ bruised at injection site, 2nd just a red rash, 3rd, slight red rash, and 4th, red larger rash. So far, me and SubQ get along. Not "enjoyable", but ok. Maybe this means Velcade doesn't have any impact on me :((

Full labs tomorrow, Dr consult appointment on Thurs Feb 16. Will find out if Pom, Velcade, Dex even made a dent this cycle. Hoping for better results than last cycle (see previous post for my numbers). Can't believe this Bi Polar life I lead now... lovely crash on it's way tomorrow and the next day and next day and for Valentine's Day lol!

  Friday Feb 10 :))

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

Give Me a Break!

2.7.17
Hello February, I'm not a fan...

Today is probably not a good day to write a blog, as I feel lousy physically and mentally, to be completely honest. I am just so worn down by battling myeloma. So worn down by fighting for my health, and then being "shocked" that "nothing" I do, matters. I am just so frustrated with feeling sick except on steroid days. Then 48 hours later after the fake boost from steroids, I get to crash and feel yucky for several days, then begin the cycle all over again. And today, thanks to my very compromised immune system, I wake up with a sore throat, headache... here we go... so sick of being sick all the time...

I see and understand my blood test results, confer with my Doctors, but I just can't get used to me being a "terminal" "incurable" cancer patient. I can't stand how this myeloma cloud has parked itself over my life for 7 years now. My IgA and M Protein continue to climb, despite hitting myeloma with this new cocktail of Velcade, Pomalyst and Dex steroids. I have another week of Pom 4mg, Velcade shot this Friday, blood tests next Monday, then status appointment on Feb 16. My IgA has increased, but I did notice that my M Protein, went down a speck. Weird.

 IgA up

 M Protein down

Honestly, I'm surprised I don't have better results. Actually "shocked" that my numbers haven't plummeted. See, I'm rather "spoiled" from my treatment success in the past. I responded well and fast after initial diagnosis. Revlimid gave me some rough side effects, but Rev and Dex saved my life in 2010 before my SCT, and then for 18 months of follow up maintenance after my SCT, keeping me in remission. When I came out of remission in 2013, Revlimid and Dex steroids were my best friend again. Lousy side effects, but they kept myeloma "stable" for quite some time. When Rev and Dex lost their power mid 2015, and I invited Kyprolis in to pummel myeloma, and it worked for almost all of 2016, very successfully in the early months. I even came close to my IgA being near the high end of normal after several months of infusions. And for a month, my M Protein did not even show up in the Protein Electrophoresis test. But after several months, sure enough, myeloma mutated again mid 2016, and overwhelmed Kyprolis' power. By late 2016, we moved to Pomalyst, then recently added Velcade.

So after meeting with my Dr on Friday Feb 3, our plan is to stay this course for the standard 21 days of Pomalyst, along with the Velcade shots and 40mg Dex weekly. Then take the standard one week break from Pom which will bring me to the 3rd week of February. Most likely I will then start the Darzalex/Daratumumab.. unless Pom and Velcade have miraculously pummeled myeloma.

I hear good things about Darza, and by next blog post, I'll know whether I'll continue with Vel, Pom, Dex or move on to Darza, Dex?? Thanks for reading and caring as you do, and I hope all is good for you and yours. Happy Valentine's Day next week.

Here's a sweet picture of me and my daughter years ago...
throwback to better times...

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