Dosage Decisions, Treatment Decisions, MRI, and That Creeping Up IGA

8.28.18

Hello loyal readers and followers-

Yesterday, Monday Aug 27 I had my monthly Dr appointment and Darzalex infusion. We discussed my IGA trending upward, but not a huge amount each month. I also mentioned my crazy, excruciating left side, lower back, butt and leg pain I get at night when trying to relax in a chair or the couch, but especially in bed. So WEIRD! It's the most intense, deep, radiating type pain ever. Since I didn't have a lot of  "intense" pain earlier on, all this deep pain I've encountered in the last year or so, is maddening, especially when trying to relax or sleep!! I alternate Advil and Tylenol, with Flexeril and gobs of Bengay. I stretch, pound my leg, bend, reposition, walk, "bicycle in place" and even lay perfectly still, deep breathing, trying to mentally will it away. Eventually I fall asleep and "magically" it's gone in the morning, and I don't have it again until the next night. So WEIRD. Thankfully on Steroid days, Dex's anti inflammatory properties attacks and suppresses that awfulness and all my other crazy bone, muscle, nerve, etc side effects, for about 24-36 hours. From what I'm reading, I think it's the higher dose of Pomalyst or maybe it's the residual Zometa in my system from July? I think I read that Zometa has a long "half life".

So I told my Dr I'd like to reduce the Pomalyst 3mg back to alternating 3mg with 2mg which I was doing since I began Darzalex, March 2017. I don't recall having this monstrous, indescribable pain prior to increasing Pom and enduring my CRAZY Zometa experience (see my July posts for those torrid details).So we'll see, as I begin Pom later this week, as thankfully I'm now on my 7 day Pomalyst break until Sunday. My Dr also ordered an MRI for me to follow up on my Pet CT Scan, to see what's going on with all my unbearable pain. Could this be the horrific bone pain most Myeloma patients mention? Or is this pinched nerves, muscle pain related to lytic lesion tumors, pinching or pressing on these areas? Or Sciatica? Ugh, who knows... but I do know, my tolerance and patience for side effects is waning after 9 years...
Yes, not a great idea to reduce dosage when my IGA continues to climb, but for me "quality of life" and less pain is more important to me than anything else.

I also asked my Dr about whether I should consider another SCT or Car-T, and she was surprised I asked, as in the past I was "No Way"... not suffering like that again... She did indicate that if was condsidering those options, now would be the time to do it, as my cancer levels aren't extreme, at this time... When I was originally Dx and prepped for my first SCT, my IGA was over 5700, M Protein was 4.3 and my first BMB showed 70% myeloma cancerous plasma cells. Hmmmm something to think about, but I want to see how my retro Darzalex plan works first. And I would probably want to experiment with all the myeloma treatments I haven't yet tried, or any of the new ones currently being approved... who knows... will cross that rickety bridge when I come to it...

So here's my life in statistics and pictures for you :))

I'm up about a 100 points from last month

Not happy about it, but not panicked about it either

Myeloma pal and neighbor Gary

He was Dx about 8 months after me

and we've been thru very similar treatments,

altho he's IGG and Kappa Light Chain MM

He's currently preparing for a Car-T trial with City of Hope 

Best Volunteer Ever, Karen

She takes great care of me and all the patients

and we have some great laughs about life

and when my Benadryl infusion meets my 40mg Dex steroids!

Still no visable M Protein

so perhaps Darzalex properties suppress it?

Here comes Darzalex

My awesome Nurse Josie

who always laughs at my Selfie taking

I picked up a Cancer magazine while waiting today

and was stunned to see Myeloma featured 

with all the "popular", more common cancers

Sadly tons of people are being Dx everyday with Myeloma

It's no longer a "rare" unknown cancer.... 

And that's my story for the last post of August, 2018. I'm already referring to my journey as "almost 9 years now", when I meet people and share my story. I think it's pretty dang amazing that I'm still here, and as "functional" as I am, 9 years later. It's probably longer than 9 years, as when looking back on all my early symptoms I denied in 2008, 2009, I've probably had Myeloma, or Smoldering Myeloma for a much longer time... 

I attended the IMF seminar this past weekend, which is very informative and well organized, has great Myeloma Specialist speakers, and I met some great fellow MM-ers. My almost 92 year old dad had a pacemaker installed this past week. I did circles around the barn last night past darkness, as I felt so bloated and stiff from sitting all day for my loooong Darzalex infusion, then sitting driving home, then sitting at dinner with myeloma buddy Gary and his wife. We took advantage of our energy blast and appetite rage from the lovely Dex steroids! I've gained a few pounds recently from eating ice cream on hot summer nights and other sweet goodies, so time to rein in my "F cancer" attitude and go back to obsessive calorie counting LOL. Wish I had the energy to walk more often, but my loooow WBC and ANC and extreme Fatigue most often prevents me from doing much physically. Ugh, to think what I used to do... Oh, I walked into several black widow webs, and killed a BIG one last night... I always feel bad snuffing out a life... but it's me or them, and I choose me, and not being bit!

Hoping all is good with all of you and yours, and you've had a nice summer. I love when you comment and let me know you're out there, and of course I love hearing your life story too. Thank you to all of you that loyally follow my posts regularly, and thank you to those that have just recently happened upon my story. 

To Share or Not Share... Your Myeloma Story

Hello 8.18.18
Lots of 8's today, this 8.18.18 in my 8th year with Myeloma.

Recently, I was chatting with other Myeloma pals about our reasons, risks, benefits and the "need" to, or not, share our Myeloma story.

Since I spent my adult life as a college Counselor- analyzing and delving deep into life-- sharing comes natural to me on all levels. But I am highly aware that I am in the minority, not the majority, when it comes to sharing and bearing deep thoughts, feelings, anxieties, stories, events, challenges, etc. Personally, I cannot imagine keeping one's cancer story inside. It's just so HUGE and life changing. As much as we don't want the title of "Cancer Patient", it is us. We can suppress, repress and deny, but once diagnosed, cancer is us, and a huge part of our life. It invades our being. Our body has betrayed us, and we cannot magically undo what has happened cellularly. Especially with an Incurable cancer such as Myeloma, which is a Forever cancer. I've had to accept Myeloma will affect my life Forever, and I have choosen to share my journey, and all the experiences and emotions that go along with it. It helps me, and I hope it helps those that I share with.

No doubt Cancer changes us deeply. The day, the minute of our diagnosis, we are changed... forever and ever. Deeply, profoundly, irrevocably. We are never the same again, no matter what we try to convince ourselves of. A cancer diagnosis changes our life, our view of life forever. It changes every facet of our lives and those in our lives are also forever affected. How we, the cancer "recipient" deals with the diagnosis, treatment and future journey, can determine how everyone in our circle processes it, handles it.

When I was diagnosed, mid morning, early afternoon December 30, 2009, I was in shock, like most everyone would be. I was incredulous, in disbelief, and in denial. I just knew my labs were mixed up with someone else's, or the lab results were in error. It just wasn't possible, that I could have cancer, and INCURABLE cancer at that! I processed it as if I was hearing a diagnosis on a vehicle or other mechanical thing that just needed to be repaired. Take more labs, go get these pills, plan for this, plan for that, come back for this and that. I went into procedure mode. I kept saying cancer cancer cancer cancer cancer over and over and over and over to myself. I tried to have it sink in. It didn't. As I walked the corridors of Kaiser, from Oncology Hematology to the lab, to the cafeteria, I remember suddenly feeling like an entirely different person. I was suddenly not "me" anymore. For one brief moment, I looked into a poster of a forest and cried, this new reality slamming me, that my life, as I knew it, would never ever be the same again, and I wouldn't be able to be or do, what I once did, no matter what I tried to pretend or convince myself of. I had 70% Myeloma cancer coursing through my body, and the fight was on. For my life.

I don't think the depth of the situation hit Jim at that time. He was overwhelmed with the medical information, but heard Cancer, and that was it. He was devastated for me. He went in to "doing mode", keeping busy all the time mode.

Driving home, I think I thought about how to tell our kids, family members, friends, colleagues. I was trying to process what I had been told. I was in shock, but acutely aware of my sudden "new normal". I think foremost on my mind was "how to share" this crazy, awful, unbelievable news. I was suddenly a changed person, not by choice, and needed to share this weirdness. I suddenly felt so different. I felt like a space alien in my own body. I needed to share what had happened to me. Not everyone does. I did, and I do.

To this day, I share. I share my story with everyone, everywhere, anytime. Myeloma is my story. Myeloma has taken over my life. Myeloma changed my life entirely. Changed my lifestyle, my career, my body, my routine, how I  think, eat, sleep, suffer, and occasionally play. Myeloma invaded and changed everything about me and my life, internally and externally. I live with Myeloma every second of the day and night. I cannot avoid Myeloma's symptoms and ravages on my body and life. I am reminded I have incurable cancer every day, most every moment. I am in continuous medical treatment, have continual, on going side effects, have bones that have holes in them from head to feet. I'm always having to avoid cootie contamination, and the possibility of breaking bones. I feel so fragile and vulnerable now. I am an entirely different person than I was prior to diagnosis. If it wasn't for being diagnosed with Myeloma, my life would be radically, incredibly different right now. I can't even imagine what my life would be now... One thing I do know, I would not be writing this blog. You would not know me, and I, you...

From the beginning, I felt I "had" to share my story. I had to tell my family, my friends, my colleagues. How could I not. Nothing about my life was the same since 12/30/2009. How could I "hide" the fact that I was now taking powerful medications 24/7 that caused, causes me crazy physiological and psychological havoc! How could I not tell those around me. I was no longer silly, carefree, "healthy", productive, active Julie. I was now a sickie. Very sick. Everything was different. I had to give an explanation for all the things I "couldn't do" any more. It would be weird if I didn't, with all the things that changed. Forward march I went with explanations, descriptions, and being incredulous that I was talking about me, describing my "new life, my new normal". "What the heck is Myeloma?", everyone asked. "Why is it not curable?", they couldn't understand. "Why do you have to always be in treatment, won't you be in remission or cured, after all the medications?" "How come they can't cure it? like all the other cancers." "Why can't you take this or that and be done with it. How can you look so good and be so sick?" "Wow, you still have hair"... LOL 8 years later... here I am, same status, same questions, different meds, still battling myeloma, same story, different day.

But this is my life, and what works for my life. My choices are not for everyone. I can't pretend I'm not battling a serious enemy every second, of every day.

I feel as if I "need" to tell my story. Partly because I have so many things I cannot do any more, or because I have to be super cautious about so much now. All my compromised immune system precautions could appear quite "odd" to the outsider who knows nothing about me, so I briefly explain my status. I dislike being "high maintenance", but I have to protect myself. My life is different, I am so different, my "needs" are so different. I feel I must explain. And then there's the "external judgement". Because I am not the type to "let myself go", externally, I don't look sick.. But when I am "sick", wow I do look SICK, especially when I have a fever, like all of last July! I am forever explaining how I can "look good" on the outside, but be so sick cellulary, on the inside. Same story for most myeloma patients. There are times I just want to shave my head, so the visual of "CANCER PATIENT" screams out at people when they see me. I am exhausted explaining this aspect of myeloma, almost justifying my status... Some don't understand "why I am still alive", while others don't get "why I am still in treatment"...

I've shared my story with anyone that wants to know. I share for me, for them, for you. I share personally and I've shared my story in professional situations. I've been interviewed about my story quite a few times. I share my story to inform, educate, and to lend empathy, understanding to others. I share my story in the Chemo Lab, when asked. So many patients are incredulous that Myeloma is truly incurable, and that I have been treating for over 8 years. When I tell my story to fellow cancer patients, non-myeloma cancer patients, it hits me what I have been through and for how long. It is incredible to have an incurable cancer, and have been through what I have been through, and continue to go through. Sometimes I'm just so used to being a cancer patient, that I "forget" how crazy and challenging my life is to outsiders. Other times I am acutely aware how so many others are so much "worse off" than I am, and their myeloma is much more visible. But I share me, my life, my story, my struggles and successes, and I want to know yours too.

2016

Sharing my story at Amgen

My eyes look like slits, as it was early in the morning

This quote should have read: 

"I feel more alive than ever"...

WHEN ON STEROIDS!"

lol lol :))

Amgen 2017

Kaiser Cancer Day 2016

And on and on and on...
How lucky am I that others want to hear my crazy story!

Sharing our stories helps others understand what we are going through, and as a result, we enrich their lives, while clarifying ours. For me, being diagnosed with myeloma cancer, so completely changed my life, that I can't separate me and my diagnosis. Some people can, and are adamant that they are "not their diagnosis". I think that's awesome for them, and perhaps they can live their life, and engage in their daily activities without cancer or treatments continually reminding them of their diagnosis and status. For me,... myeloma affects everything I do, and everything I am, because myeloma stole my life as I once knew it... and nothing will ever be the "same" for me again...

The Chemo Lab is my 2nd home

for life, forever,

because myeloma stole my life.

That Is My Reality

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

with someone or something as often as you can! 

Let's Go, Double Darzalex, Starting Now

8.8.18

Hello August that is so far, so much better than July!

Happily I don't have any new news for you since my last posts and I am thrilled to have July's craziness behind me! I'm looking forward to seeing how my body responds again to Darzalex every other week, 2x per month. My first "retro" infusion will be next Monday, Aug 13th. 

I've been very very fortunate that the triplet of Darzalex, Pomalyst, Dex steroids has been as successful as it has been since March 2017. My IGA began rising early this year by a few 100 points per month, and is now around 1430 (normal = 70-400), hence my "insistence" that we try going back to 2x per month infusions, back to when my IGA was in the hundreds, not thousands. Drs worry about doing what is not a standard protocol, but what the heck, if it worked once, it hopefully will work again. And it seems like most every treatment we do with Myeloma is a "science experiment anyway, so I'm certainly willing to try something that worked before, that hasn't been "officially studied or researched". It's the new treatments and clinical trials, with new unknown side effects, that scares me... the UNbrave cancer patient I have become :))

Perhaps I live in a "myeloma dream world", wanting, hoping, expecting to remain on the same treatment for a while, but darn it, I want whatever "quality of life" I can have, while I can. Quality of life for me, is manageable, somewhat predictable side effects. Yes, I have lousy side effects weekly, but at least I have some predictable consistency in my limited life.  Fighting cancer and dealing with my body's betrayal for 8.8 years is exhausting, day in and day out. As I always say... can you even imagine Knowing you'll be "sick" every week? Imagine- weekly, daily, trying to Plan some semblance of "living" around treatments, crazy, debilitating side effects, and the the "unknown" surprises". It's daunting and mind bending and truly exhausting. I still cannot believe this is MY life. 

Last Darza infusion, July 30-

Got to hang out in the chemo lab 

with my fave volunteer, Karen xoxo

 Met a new cancer warrior Paul

And here I was with girlfriends, summer 2009

just months before I was diagnosed

My IGA was over 5750, 

M Protein around 4.3

And first BMB showed 70% myeloma cancer

Yes, I must live life while I can

If only side effects and debilitating FATIGUE

would stop sabotaging me...

But then again, there are those 

that are in and out of the hospital weekly, monthly

And myeloma bone lesions break their bones regularly

One Day At a Time-

I'm always grateful for all the good 

I am so fortunate to have in my life. 

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

with someone or something as often as you can! 

Hellooooo August, Good Bye Awful July!

8.1.18

Hello August!
Looking forward to never ever seeing another July like this past one. Cannot believe all the drama I experienced, and I am so glad to have it behind me!

Had my Darzalex infusion on Monday, July 30. Took 40mg Dex steroids prior to, so I always feel ok on infusion days. I "enjoy" the up up up, relief relief relief from the steroids, then the sleepy calm of the Benadryl during the Darza infusion. I never did much medication, not to mention, never doing drugs or alcohol prior to my myeloma diagnosis, so here I am mid life, experiencing these crazy rides from the cancer meds. Of course the medication CRASH days later are no fun, but as long as I don't break any more bones, or have extreme fever and pain beyond pain like I did from the Zometa infusion, I can suffer along with all this insanity. (Yes... the future... I know... more is always coming... Myeloma will continue to mutate and challenge me forever, until, until... but I don't focus on that... One day, One drama, at a time for now..., I just want to feel somewhat ok, if I can, if myeloma let's me... I live in the moment now, I live today...

So just a quick update prior to my usual On The 8's update, as I had such awful news my last few posts. The "good" news is my IGA "only" went up 100 points this month, the Zarxio brought my WBCs up into the super "normal" range, my rib is better, pain and fever from the stikn Zometa is gone, and my Dr and I agreed to going back to Darzalex every other week, to see if that will bring my rising IGA back down.

WOW! look how 3 injections of Zarxio raised my 

WBCs from 2.0 to 8.2!!

WOW, look how Zarxio raised my ANC! 

From .71 last labs, to 5.93 in just 3 injections!

======================
And now on this again.
Was on it in 2010 at the beginning of all my treatments,
due to how immune compromised I always am,
and the high dose steroids.
Looks like yellow preschool finger paint!

"BRAND NAME(s): Mepron. 

"USES: This medication is used to prevent or treat 
Pneumocystis jiroveci pneumonia 
(previously known as Pneumocystis carinii pneumonia or PCP)." 

"It is an antiparasitic that prevents the growth 
of the germ responsible for this infection."

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

The longer myeloma and I have this crazy relationship, the more I know I just don't want to suffer, and feel awful. I'm just not as "brave" as I used to be. I prefer not to jump from one type of treatment to another (if possible), and I definitely don't like the risk of UNKNOWN NEW SIDE EFFECTS FROM NEW TREATMENTS (altho I know this is ultimately unavoidable).

Everyone is suggesting I get into clinical trials, do another SCT, or go for the CAR T, or change this, change that, get 2nd, 3rd opinions, etc etc etc. 8 years is a long time (at least for me) to be on continuous treatment, so if I can lessen my side effect suffering, I'm all about that. Plus my stats right now just aren't anything to "panic" about. My IGA is "only" 3x the high end of normal, I don't have a M Protein spike, and equally important, my organ status is good! The elusive "remission" is not my goal. Feeling ok, and having myeloma "controlled" is my goal. And of course... QUALITY OF LIFE! Everyone approaches this crazy ride differently, so for me... less is more.

My Drs have never let my roller coaster status get out of control. We treat continually, and when the numbers jump quickly, or seem to not be responding to the current treatment, we switch. My Drs hit my myeloma intense at Dx 2009/2010, then after coming out of SCT "remission" mid/late 2013, then late 2015, then late 2016, early 2017. I'm super happy that Darzalex, Pomalyst, Dex has been working for me since March 2017!!! I'm actually kinda spoiled by it, hence not want to switch, and hoping going back to every other week, will bring me back to where I was this time last year! Yep, as awful as all this is, thankfully my body responds well to treatments... when it doesn't... I'll cross that swaying bridge when I come to it. But in the meantime...

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

with someone or something as often as you can!