Happy 1 Year Anniversary to Darzlex, Pomalyst, Dex!

Hello 2.28.18

Unbelievable coincidental anniversary for this "on the 8's"post today!
Exactly 1 year ago today, February 28, 2017, I began Darzalex IV infusions.
Rather than recap my first Darzalex infusion story on this post, here's my post from Feb 28.17 and Mar 1.17 . For those of you that are not familiar with Darzalex- Daratumumab, it is an IV infusion spread over 2 days for the first initial infusion. This is done to prevent and avoid severe infusion reactions.

"DARZALEX^® is a monoclonal antibody that works in several ways. One way this monoclonal antibody works is by attaching itself to multiple myeloma cells in your body and directly killing them, and/or allowing your immune system to destroy them.

DARZALEX^® targets and attaches to a protein called CD38, which is present on the surface of certain types of cells (eg, red blood cells) and is also present in high numbers on multiple myeloma cells. Since DARZALEX^® targets the CD38 protein, it may also affect other cells with this protein on their surface."

I'm thrilled to report that I did quite well with my initial infusions, and have been ok this past year, thank you Darza, Pom, Dex :))

Here's what myeloma was doing to me before Darzalex, Pomalyst, Dex:
(Mid to late 2016 was when I became refractory to Kyprolis Dex)

And here's where I am a year later:

I'm still surprised that Darza, Pom, Dex is continuing to hold myeloma's power over me to a minimum. Since I became Refractory to Kyprolis Dex mid 2016, after just 10 months or so, I was not holding my breath that this triplet would outsmart myeloma for an entire year. I've been even more surprised how well I'm doing, since the "required protocol" is a reduction in dose of Darzalex from 8 weeks weekly, to 8 weeks bi-monthly, to monthly now. Yes, my IgA has jumped a bit, but nothing like what it did in 2013, 2014, 2015, 2016. We'll see what my next labs in March bring. So it's Happy 1 Year triplet cocktail success Anniversary to me!

********************

For those of you that follow my blog regularly, you know we lost our beloved big cuddly blonde Labrador doggie Pawsy to liver cancer at the beginning of the month. He left such a hole in our hearts, our life, the doggies, and our ranch is just not the same without him here. He was such a gentle loving soul, and just so irreplaceable... Not that I try to "replace" our critters when they pass, but we have always had a buddy system here. I just believe that animals are happier when they have a buddy of their own kind. I am a committed believer in Rescue, and always look to save a life, when one of ours passes on. Although we have 2 little doggies for company for our big doggie, we just have always had 2 Bigs outside. As a result I have relentlessly looked for a new Big for Abbie... to no avail. Sadly so many dogs have serious "behavioral issues", and with my and my husband's health issues now, I just can't take on the responsibility of rehabbing a big dog with issues, as I have in the past.

So in the process of looking for a Big... look who I found...
or should I say... look who found us!

We've visited several Shelters over the last several weeks, looking at many Big doggies. So many need homes. So many sad cases and sad faces. So incredibly heart wrenching! But while looking for a a Big, look at this Little that found me. That Face! Those Eyes! I wasn't going to give in, as we don't "need" another Little, but how could I resist this face, saying "Pleeeeeese don't leave me here"....

Pleeeeese Take Me Home

Look how adorable I am! 

I'm just a young lost stray boy needing a home

So what do think I did... 

Yep, put my name on his "Commit to Adopt" list. If the owner doesn't show up after a week, he becomes available on his release date, after his neuter surgery. The next day we went to visit him for a "meet and greet", and he completely stole our hearts. Pawsy must have "connected" us all together, knowing this little guy needed us... He's just a mini version of Paws. So uncanny. Just such a cuddly, playful love!

The following day, the little guy was neutered and we were able to bring him home! 

 Freedom Ride for "Little Jack"

Such a love bug! So grateful.

Happy lil boy

We love him so much!

And he fits right in with the Pack!

Here they're "sniffing for kibble", 

A game I play with the doggies, 

where I sprinkle their kibble on the lawn

and they get to "hunt" for it 

So that's my February 28th story for you. 

Darzalex, Pomalyst Dex has been an amazing success for me for an entire year, even though I become Neutropenic and very immune compromised almost each month. But living in a bubble and being super cautious about cootie contamination, is an inconvenience I tolerate to stay alive.

Although we lost a precious life this month, we saved a life that needed us.
I hope your February was good to you, and March brings happiness, health and smiles to your life. 

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

Myeloma on the Move

Hello 2.18.18

Did you see my surprise, not on the 8's previous post :)) Due to "popular demand" lol, I posted my update on the 14th for you. I had my Dr appointment and Darazlex on Monday Feb 12, and learned "myeloma's on the move" again. Not huge, but a warning my warrior cells better get it together. As you can see (or saw), IgA is up about 200 points.

My IgA type of myeloma has always "roller-coastered", and often quickly escalates super high, but also responds to treatment quickly too. Pretty shocking that my IgA was over 4100 a year ago, so my current 715 is just a "head's up" that perhaps monthly Darzalex is "too weak" a treatment for me, and hopefully I can go back to 2x per month. I also committed to taking my weekly 20mg steroids consistently, as sometimes I "cheat", and take less. I've done this previously, as I had hoped that less Dexamethasone would suffice in taming myeloma, since there are so many side effects from continuous use of steroids. I've been on Dex steroids continually since mid 2013 now. 4.5 years!

But so far my body organ and blood chemistry labs are good, and I'm careful to watch my carbs and sugars, as I certainly don't want to become Diabetic from all the steroids :(( The other good news from my recent Labs, is that my M Protein is not measurable.

IgA up from 519

Looks ok. I'd rather be low, than high

Thrilled to be holding steady on the "No" M Protein!

And finally, doing several days of Zarxio (Neupogen), took care of my Neutropenia quickly, and I went from a low of .8, to in the normal range of 2.97 . I am still VERY cautious, and live as if I'm Neutropenic all the time. Just too many cooties out there for this immune compromised cancer patient! 

Our hearts are still so sad about losing our adorable white Lab doggie Paws (see previous posts), and I've been looking continually online for a rescue Labrador that needs a home, but sadly we haven't found a match yet. There's also a part of me, with my and my hubby Jim's continuing health issues, I'm thinking that "less is more" at this time of our lives, and maybe we'll just stick with the 3 girls. But then again, I want to rescue another life, that needs a home, as we have always done...

3 happy girl doggies

Abbie misses Pawsy, but she's enjoying being inside

2013, after a doggie event, 

and just before, or as myeloma was roaring back

Live happy, live well, and make a difference somewhere, somehow, 

with someone or something as often as you can 

Blood Test Results and Chemo Lab Aventures

Hello 2.13.18

I'm sneaking in an additional post, with my updated Labs. Thanks for caring and asking to hear my results before my next predictable, "on the 8's post :))

Well as you saw from my previous 2.8.18 post, my WBCs were quite low at 1.9 (normal = 4 - 11), and my ANC at .8 (normal = 1.8 - 7.7), which means, thanks to Pomalyst's power, I'm Neutropenic again. I'm quite used to this now, as Pom seems to do this to me almost monthly now. Early last year, we lowered the dosage to alternating 3mg and 2mg for the 21 day cycle. 4mg is the highest Pom dose. As I write this, I smile at how much a cancer patient gets used to, and adapts to. In the "normal, healthy" world all this is would be so shocking and debilitating. But I've learned to take it all in stride, and know "I can't control the things I can't control"... so I move forward and deal with it the best I can. I don't think I'm shocked by much anymore, regarding my situation. I read so much about myeloma, and understand what myeloma treatments can do to us. I hear so many stories about what other patients are dealing with, and what their complications are, that I am "grateful" for my type of challenges. Sounds crazy, but I'll take the many complications from my extreme compromised immune system over the horrendous bone issues so many myeloma patients suffer from. It's all in what we individually get used to, and learn to tolerate.

I used to fear self administering Neupogen Zarxio injections. I just didn't think I could do it. I wrote a whiny post about it last spring. But I've toughened up, and now it's no big deal, and I actually look forward to these amazing immune system, white blood cell (WBC) boosting shoots for a few days! They're like magic, and I feel better, stronger. The debilitating fatigue cloud is lifted. If just for a while though, as I would have to do these regularly to maintain WBC "euphoria" lol.

Feb 6

NEUTROPHILS, ABSOLUTE COUNT      

0.80 x1000/mcL         

Normal Range = 1.80 - 7.70 x1000/mcL

Feb 9

NEUTROPHILS, ABSOLUTE COUNT

2.97 x1000/mcL

Normal Range = 1.80 - 7.70 x1000/mc

After 3 days of Zarxio injections, just look at this boost! 


WBC's went from a low of 1.9 to a high (for me) of  5.2 !!

With the Winter Olympics going on, I can't even imagine how high and normal the athletes CBC's and other body functions are, to compete at the extreme skill level they do! It's truly amazing what a fit, healthy body can accomplish. I used to ski with my high school ski team, and I later shared my love for winter sports with my kids. They grew up skiing, and then snowboarding, as we would take regular family trips to the snow. Oh, how I miss this. Can't remember the last time I skied, and watching the Olympics now, sure makes me miss being able to do that. Ok, put that on the Bucket List!

There's dysfunction with the mobile version of Kaiser's lab results right now, so I wasn't able to capture a cool screen shot, as I previously have. So here's the copy/paste of my current IgA status, which shows Myeloma's on the move in the wrong direction again, trying to dominate this wonderful triplet cocktail of Darzalex, Pomalyst, Dex steroids I've been tolerating for almost an entire year now! Wow, it will be a exactly year on my next "8" post, 2.28.18, that I began Darzalex.

IMMUNOGLOBULINS G, A, M – Feb 6 2018

  

NAME STANDARD RANGE	IGA 70 - 400 MG/DL	IGG 700 - 1,600 MG/DL
10/2/17	502	251
11/2/17	580	220
11/16/17	608	247
12/3/17	575	199
12/27/17	519	196
2/6/18	715	226

So as you can see, my IgA is almost 2 times the high end of normal. (I cut the IgM stats out, as they corrupted the chart layout.) I'm "sad" myeloma's on the upward climb again, but I'm certainly not "panicked", as I've been down, rather "up", this road so many times, and have seen my IgA as high as 5760 at diagnosis, Dec 30, 2009, and then in the 4000's almost every year since coming out of remission in 2013. I've just gotten used to so much in the 8 years living with, battling myeloma. Here's where I was just before beginning Darzalex and Pomalyst. Just happened to see this recently, in my old photos:

I confessed to my Dr yesterday that I did reduce my weekly Dex steroids from the recommended 20mg per week to 12mg per week twice this past cycle. I'm concerned that I've been on a steady diet of Dexamethasone since mid 2013 now! I worry about all the side effects, and was hoping my IgA would hold steady on a lower Dex dose, but I'm guessing not :((  So this month I will be consistent and do the 20mg weekly, no matter what "quality of life" events I want to partake in...  Crazy to live life this way, always planning around when I'll feel lousy, always having to allow for the medication crash.

Speaking of SIDE EFFECTS, yesterday was a particularly hilarious day in the chemo lab for me. Hilarious and chemo lab are an ironic paradox in the same sentence, but here's what happened to me. I took my 20mg Dex steroids around 8am for my scheduled 10:30am Darzalex infusion. For some reason, they hit particularly :silly and fun", "warm and happy", just as I arrived to the chemo lab. I know I have written about this previously, but I just can't get over how unpredictable my body's reactions are to these meds I must take to stay alive. Sometimes Dex hits as a less dramatic overall boost, sometimes with a manic bang!

Being so close to Valentine's Day, I brought bags of Dove chocolate for all the Oncology staff (my Dr, Nurses, chemo Pharmacists). I do thank you treats often for this wonderful team, as I want them to constantly know HOW MUCH I APPRECIATE THEIR DEDICATED CARE and PROFESSIONALISM!
I'm naturally an animated, effervescent, communicative person, but Dex just revves that up to an exaggerated level. I do (try) to keep myself in check. As you can imagine, the chemo lab isn't the "happiest place" for most people, and there's no knowing the psychological place most patients are in, when I come bouncing in, silly and animated. I really do make the effort to de-energize myself, and be courteous and "appropriate". I have had many patients ask what meds I'm on, that make me feel so ok, as they want this "happy blast of energy" too.

Mondays, sweet Karen the Volunteer is there, and we've had a lovely friendship for years now. Tragically she lost her husband to stupid cancer a few years ago, and is so gracious to give her heart and time to the patients and staff in the chemo lab. We always have stories to share, and other "regular patients" often join our conversations. 

After I settled in, Karen brought over a lovely patient (named Karen also), to visit with us, that I had met several times before, so our little area quickly became a chatty party. In the bed next to me, was a younger patient, who soon joined in on the conversations. I mention all this, as here we are, all hooked up to IV's, serious chemo meds coursing through our veins, but it felt like gals just having fun conversations in an "ordinary" circumstance. The irony is ridiculous. Chem lab, fun? What an oxymoron for sure! Soon my nurse comes to begin the "premed" process for me, and rather than a drip bag of Benadryl, I'm prescribed the "syringe push" of  50mg of Benadryl. Since Darzalex is a long, slow infusion process, the point is get the premeds going, so we can get thru Darzalex before closing time.

Soon, actually rather quickly, the Benadryl begins to affect me. Putting me into mental sloooooooow mooooo! I feel the Benadryl taking over my being...  down I goooo... my functionality slows, but my thoughts still race. My brain and mouth no longer connect effectively lol! I have a difficult time expressing my thoughts. It's really quite hilarious. I mention it to the ladies, laughing about my disconnectedness. I'm slurring words, trying to finish whatever story I was attempting to tell, but it's all muddled, and confused. The conversation became absurd, as I tied unconnected stories together. What a mess. We all laugh. I try to carry on, but finally, I laugh and tell them, I'm too fuzzy and muddled. Everyone says just give in and sleep, but I've never been one to sleep in a public "fish bowl" like that. But I do eventually shut up, and laugh at my silliness.

I'm sure these sensations could be very disconcerting to many, but I am curious and fascinated with everything I go through. Never before myeloma, did I have medical issues, or take strong meds, so I continue to find the personal "entertainment value" of these wacky experiences so very interesting. But trust me, if I was nauseated or couldn't breathe, or in unbearable pain, or was having serious reactions, I would not be finding any of this humorous! I'm familiar enough with this particular chemo process now to know what's coming my way, so I can be humored how the HIGH of steroids collides with the DOWN of Benadryl. I can only imagine what is going on inside me, bio-chemically. Boom, poof, crash, bang... I picture chemical boxing gloves inside of me lol. One side fighting to be hyper and manic, the other side fighting to chill and relax. It's really quite an interesting experience to go from one extreme to the next, all knowing it's part of the protocol to pummel cancer cells.

And that was my day. Pain free. Hyper-manic. Dulled and calm. Kooky and silly. Sleepy, but awake. Social, but exhausted. Accepting, yet incredulous. Observing my life and others. Always wondering why, how come. How did all this happen to me and the others. It's about 4:30 by now. My Darzalez infusion is finally done. I like to complete the entire hydration bag after the Darzalex, to cleanse my veins, then time to remove my hand IV. Yay, I'm free again. I thank my kind nurse for caring for me all day. I'm readying to leave when I see, our male nurse, giving a young woman a "tour" of the chemo lab. I'm thinking she's probably getting a tour with an "older" family member. Then she looks over at me, and questioningly calls my name. I look up surprised. She looks familiar, but I can't place her immediately. It's out of context. Perhaps one of my past students, here with a parent? I say hello, and "sorry, who are you?", feeling bad I had to ask. I blame it on all the meds, fogging my brain.

Omg! I suddenly connect who she is. One of my daughter's good friends since kindergarten! We both quietly "scream" in excitement to see each other. She comes over to my bed to chat. I ask her who she's here with for the tour. She tells me it's for her... I'm incredulous. I'm shocked. We exchange WTF exclamations over and over. She can't believe her diagnosis either. Happened so fast, just in the last two weeks. We're in our own world, as the chemo lab is closing. I suggest we go out to the waiting area to talk. I want to hear her whole story. My heart is breaking for her. She's too young, too beautiful, too happy. Just recently married, I think 2 years ago. Life is happy for her. Purring along. Now this. I'm shocked. We allow ourselves to cuss, WTF, how come, why, makes no sense. We want to cry, but we're also laughing, as we're so happy to see each other. So much to share, so much to catch up on. It's now after 5pm. Most of the nursing staff has left, but as a few walk out, they see us, and I briefly share her story, and our 25 year history. Incredible. Crazy. So not fair! How does cancer happen? My heart aches for her, and how her life has changed in an instant. A biopsy. A phone call. Life will never be what is was before. We discuss this. But, she'll be ok. She's young and strong. Positive and optimistic. She has the great care I do with Kaiser. And has a great support network. Me included. But still... WTF? Just another bipolar day in the chemo lab.

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

Can We Just Get a Break...

Hello 2.8.18

Just when I had thought life would hum along for me, we're tossed a curve with our beautiful, beloved Labrador doggie Paws, being diagnosed with Liver Cancer. Yes Cancer. Cancer. Cancer. Cancer in my life. Again.

2017

This past year, this beautiful boy was a little less active, but still his happy, loving, playful, goofy self. Nothing raised a red flag at all. Until January. Early last month, I noticed he looked a little swollen in his abdomen, girth area. I thought my hubby Jim was feeding him more, as this has been a "war" between us all our lives. Jim loves to show "love" to all our critters with treats and extra kibble. But when we would pet Pawsy, we noticed his collar was loose, and in certain areas he was a bit boney, so this didn't make sense with his swollen belly. I scheduled our wonderful horse (and all animal) Veterinarian for a "ranch call" and he quickly knew "something" was up. Next day we went to his clinic for xray scans. Sure enough, Dr John saw lots of fluid in Paws' abdomen, but couldn't exactly identify if the fluid was coming from his heart, lungs, or other organs. But he knew there was something serious going on. He scheduled a Veterinarian Ultrasound Specialist to come and do additional detailed scans, to pinpoint where the fluid was emanating. (Sounds like our myeloma lives, right).

2013, just months before myeloma came roaring back for me

Paws was put on a diuretic and prednisone, to hopefully help drain the fluid and lessen the swelling. Yes, pills, scans, side effects, wondering what's going on internally... all medical trigger points for me. Thinking how this could be, will be, my future. Thinking about how myeloma eventually affects all our organs, and perhaps what I am witnessing in my beloved dog, will one day be my journey too... Every medical event I have with my animals pushes lots of buttons for me, as I can't help but project the similarities coming my way, one day.

Days later the ultrasound specialist does detailed scans of Paws, and determines that his liver is terribly diseased and looks like cauliflower, not smooth, as a healthy liver should be. Both doctors consult and agree, "cirrhosis", or cancer of the liver. Noooooo... We're all so devastated and shocked. Pawsy is only 8 and half. How can this be! He's had the best life here. Healthy environment, good food, fresh water, unlimited exercise, and overflowing love. But I had learned that his bio-brother Ranger (below) passed last year from another type of abdominal disease, spleen related, I think cancer too. My friend Terri and I discussed that there must be a genetic link to their much too early passing. We're both so devastated as these doggies were so special. So loving. So kind. So happy. So irreplaceable...

Paws and his doggie family July 2016

Sadly Paws went down hill rather quickly. We are still in shock. For most of January he was ok, but slowing down. He would take his pills in treats eagerly up until last week. Dr John came on Friday to drain fluid from his abdomen, and we scheduled another visit for Monday, to do the same. But over the weekend, he lost interest in food. He moved much slower. I knew his body was failing him, and the disease had taken over. Nothing us humans could do at this point, except give him love and comfort. Again, all this triggers so many thoughts and emotions in me. What will my final months, weeks, days be like. What choices will I have or not? I'm not afraid of death, but I do have fears about "how I will die"... We did all we could to make him happy and comfortable. Last Sunday was a beautiful day. We spent the day just "being" with him. Sunday night he had difficulty coming up to the house from the yard. I put a soft mat out for him on the grass, just in case he couldn't make it up to the house for the night.

Jim with Nala, Hanna, Paws- on his last day

Monday we awoke to him with labored breathing, and we knew his time was near. Again, we were shocked how quickly his body failed him. I called Dr John's office, and he was able to change his schedule to come quickly. Our son's girlfriend Ashley was with Paws when I went to open the gate for Dr John. Paws took his last breaths then, with Ashley, and when Dr John and I got over to where they were, Paws took his very last breath. He was such an amazing dog. So loving, loyal, happy, silly, playful, joyful, and had never had a bad day in his life, until this. Our hearts are broken, but as we always do, when one passes on, it makes a space for another rescue. Plus we can't let Abbie be without a big dog partner... there's a lucky dog out there now, that will be coming to animal paradise soon... Paws will send him soon...

Abbie and Paws, 2015

Bye Pawsy, we love you so much!

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

So Tuesday was blood tests. My last labs were the end of December 2017, due to being sick with the flu or awful headcold in early January. It's been longer than usual not knowing my status, and I am very curious what my IgA, M Protein, SEP, etc will show. My CBCs do show online, and here's my status from that perspective. And..... yes.... I'm Neutropenic again, as my ANC is .8, so I began several days of Zarxio-Neupogen injections the other day. I don't feel particularly lousy from my 1.9 WBC, and .8 ANC, but so much is always going on in our lives, that I barely have a chance to feel lousy, unless I'm really really sick, like end of last year, and early January. This Neutropenic crash is from my 21 days of Pomalyst, which I completed on Sunday. So this does make sense, and has happened to me quite a few times since I began the triplet cocktail of Darzalex, Pomalyst, Dex almost exactly a year ago. Nice to be able to connect the dots with side effects.

Just look where I was 1 year ago! 

Pretty scary! 

2.1 for my Beta2 Microglobulin is above the normal range, but it's holding steady from last month. Steady and Stable is ok with me. When I was diagnosed end of Dec 2009, this level was 4.6, so I'll take the 2.1 and wait to see what my IgA and M Protein is. I'm thinking of calling my oncology office tomorrow and see if my results are in, and they can release them. My next Dr appointment and Darzalex appointment is this coming Monday, Feb 12, so I will for sure know my status then. Did you want to wait for my next post on Feb 18 for the results, or should I post again before then? :)) 

Hard to believe  this February 28 is my 1 year anniversary of beginning Darzalex. I'm thrilled and surprised that this triplet of Darza, Pom, Dex is still as effective one year later. I sure hope it will continue to be effective for a long long time, as the side effects are "tolerable", and I can more or less predict them now, and plan accordingly. When myeloma gets stronger, I hope we can go back to additional Darza infusions per month, rather than changing to another treatment. Ugh, I just "hate" getting used to a new treatment, and wondering what new side effects will attack me. The longer I battle myeloma, the less brave I am, and less bold I am with treatment changes. But I accept my situation, I accept the incurable nature of myeloma, and I will do what I have to do to stay alive. 

Hope all well with all of you, and you and your loved ones are avoiding this awful flu season. May love and happiness fill your lives. 

2013, returning from a doggie hike... not long before myeloma surged back

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