Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Wednesday, April 18, 2018

Myeloma's Life Lessons Never Stop

4.18.18

Hello Everyone-
I'm alive! But still in the process of surviving this awful sinus crud that attacked me. The 40mg Dex-steroids from Monday have worn off, so I feel super blah, lousy, clogged, tired, weak, headachy, ouchy, and full of crud still. If you haven't read my previous 4.14.18 post, (I just had to sneak in between the 8's), please do. Gives you detail about what my "body of betrayal" has been putting me through recently. I'm still thinking about how "stupid" I was to break all my antibacterial protective rules for my daughter's birthday weekend. Everyone says "it was so worth it Julie"... hhmmm me... not so sure :((

Each time someone talked to me, they spewed their cooties at me!

Duh! Lessons learned for sure:
1- don't go to dance clubs/bars with masses of people when you are Neutropenic!
2- don't go to restaurants, chancing massive cross contamination, when you are Neutropenic!
3- don't go out in crowded places when your WBCs are barely 2.0, and your ANC is .81
4- don't assume Zarxio Neupogen shots will magically make you "normal" and strong enough to battle off invasive cooties Julie.
4- don't pretend to forget myeloma's enormous impact on your life Julie, myeloma owns you.
5- don't let your guard down again, you know the outcome. Your immune system is NOT normal and will Never be normal Julie. Accept. Accept. Accept...

Cooties, Germs, Cooties, Germs everywhere, out to get me!

Yep, I have to, have to, have to, accept I am a cancer patient. My body is not capable of protecting itself. I'm not normal any more. Haven't been, most likely not since 2008. I have no doubt Myeloma was digging in, mutating out of control, and taking over, the 2 years before my Dec 30, 2009 diagnosis. Otherwise, how could I have had 70% cancer at diagnosis...
Yes, I go for so long not taking chances, then I do... and boom, reality slams me, and I'm a sickie. 

Anyway...

Within all this yuk, and sickness challenge, I do have some GOOD NEWS!! 
At my last Dr appointment, also my Darzalex infusion day April 9th, the Monday after my party it up weekend, just before I got sick... I received good news regarding my IgA roller coaster.

IgA not down a lot, but better a little Down, than Up!
Yep, have to accept Dex steroids help beat up my type myeloma

I'm IgA Lambda, so this looks ok
Better too low, than too high

Still No M Protein detected!

Here's all my IG's 


I haven't heard back regarding my PET CT Scan... I think I'll send an email...

Ok, I feel yucky, so today's update is short and sweet. Thank you to all my invisible virtual readers for your interest in my crazy life story! Hoping your life is flowing smoothly, happily, rewarding and with as little drama as possible. I will never understand why things happen as they do... we don't always have a choice in what happens to us, but we have a choice in how we handle all our challenges... I choose to be as happy, grateful, analytical, and forward thinking as I can, when I can. Feeling awful definitely challenges me, and I can get really frustrated and hopeless, but when the fog clears, I'm back to my fighting spirit.



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




Saturday, April 14, 2018

Caution... Not a Happy Post... Thank You Life Stealing Myeloma

4.14.18

My throat has been on fire for days. My head hurts. My skin hurts. My eyes burn and mist. My back is still seized from the PET CT Scan. My nose has gross congestion. I've gone through uncountable big boxes of kleenex. My face hurts from all of this. I know the evil cough is coming... I'm miserable physically and mentally. I feel so fragile...

It's a BEAUTIFUL warm, clear Spring day outside... blue sky, new green leaves on the trees, roses wanting to bloom, flies and bees beginning to buzz, happy doggies wanting to play, hens clucking they've laid an egg, my horses content just eating hay, not a care in the world...  I am so very grateful for ALL the good things in my life we've worked so hard for, and for all the other "advantages" I have in my life... But... always a But... I am so frustrated, so sad, so angry, so on the verge of weepy, for how Myeloma has completely stolen my life. Stolen my body, stolen my independence, stolen my spontaneity, stolen my options, stolen my immune system..., stolen my life as I once knew it.

What you wonder... has happened to the funny, optimistic, fighting Julie spirit?

What happened was I tried to live life, tried to have fun, tried to take a risk being just a bit normal, and I got completely sabotaged. Completely ambushed and laughed at by those cruel Myeloma cells circulating 24 7 within me, saying, "oh No you don't Julie", "hahahahha, we own you!" "Who do you think you are going out to a cootie contaminated public place to celebrate your daughter's 30th birthday". Ha Ha Ha! myeloma laughs at me... "Oh no you don't, Ms Immune Compromised, Neutropenic Cancer Patient, you're not "allowed" to get a PET Scan on Thursday, a birthday pedicure with my Birthday daughter on Friday, then go to a crowded, germ infested country line dance club Saturday night, then go to Sunday brunch the next day!" Hahahhaaaa, myeloma laughs at me. "Oh No you don't Cancer Patient Julie!" Nope, nope, nope, Julie", Myeloma snickers at me, "You're not NORMAL, and you will NEVER be again!, Myeloma laughs. Ha Ha Ha you incurable cancer patient Julie, with WBCs at 2.0 and ANC at .81, on Zarxio Neupogen shots!" What The Heck Were YOU Thinking!!! Ha Ha Ha Julie, you really thought you could step out and have a bit of fun AND NOT GET SICK!"... hahahahahahahhaaaaa, Myeloma laughs at me, jabs me, tweeks my back, sends daggers thru my nasal cavity, lights my throat on fire for days, and completely depletes me, stealing my soul, my optimism, my hope, my thoughts that maybe, just maybe, 2018 might be a year for a bit fun... Nope! No break from my ravages!", Myeloma laughs...

I just want to cry. Frustration tears. Disbelief tears. Sad tears. I constantly shake my head in disbelief. HOW DID THIS HAPPEN. WHY DID THIS HAPPEN. WHY ME. HOW COME. I remind Myeloma I gave my life to my family, to rescuing animals and humans. Giving my life to helping students become their best, finding their dreams, realizing their goals. I gave, and gave, and gave, thinking that when I retired, I'd be free to do all the things I wanted to do. I never had huge retirement goals. I've never had "materialistic" goals. I just wanted to own my own life. Eat when I want. Laugh and play with family and friends. Play outside, drink in all the beauty Nature has to offer us. Take care of my animals and those in Shelters. I always told my kids when "the time came", I would retire, and love nothing more than becoming their kid's Ranch Gramma-Nanny, while they were at work... Nope...

Thank you Myeloma for stealing my life, our dreams, plans, goals, freedom, health, spontaneity. Thank you Myeloma for putting a painful pin in my life's balloons of optimism. Thank you Myeloma for taming me with this awful sinus infection, seized back, giving me a reality check, that NO, I cannot function as a "normal" human being... ever again. Oh but I've tried so many times since diagnosis 8 years ago, and most of the time, you Myeloma, completely sabotage me, and let me know whatever I thought my "second half of life" would be, is not, cannot be, and is gone... forever...

My life now is being sick, avoiding sickness. Battling invasive bugs, battling mutating cancer cells.They're all out to bring me down.

Yes, I'll get beyond this awful bug currently humbling me. I'll buck-up, shut-up and be me again soon... Each day I'm a bit better since the cooties invaded late Tues, revving up Wed and then fully attacking with a fever of 101.9 when I woke up Thursday morning. I felt awful physically and mentally. I gave in, I accepted my status. Don't have a choice. I laughed-cried at myself every feverish, sore throat, head pounding, nose clogged moment. I just laugh incredulously at my daily Myeloma battle, and my crazy-thinking that I "could be normal" here and there. My entire purpose in life is just staying ahead of  Myeloma, one pill at a time, one infusion at a time, one injection at a time, one type of pain at a time.  And yes, as Myeloma patients go, my complaining is ridiculous in many ways, and my heart breaks for all those out there with serious myeloma immobilizing issues.

But for now, I'll whine, weep, be sad and angry... as I mourn my past health, and the journey ahead of me...


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


Sunday, April 8, 2018

YOLO! Another Scan. Another Birthday. Taking Risks for Fun. Maybe Regrets Later!

Hello 4.8.18

So Much To Share! So many results and potential decisions to come! But today was my daughter's 30th birthday, so most of this weekend has been devoted to partying it up :))  I did something this weekend so completely out of my fear of cooties character, tossing my fragile (and current Neutropenic again) status out the window, and living a little crazy this weekend!
But first the headlines:

Thursday I had my first PET CT Scan, and that, and the low glucose, low carb diet, and fasting prep, was an adventure itself! Normally, I pretty much eat whatever and whenever I want, and I tend to be like my hoofed animals, doing a lot of "grazing", so this exact watching of Carbs and Glucose was Not Fun for me! I eat really healthy, trying to get something from each food group daily, but I also allow myself a cookie here and there, or fruit smoothies, or bread products, etc, so this 24 hours was an interesting experiment for me. Not awful, but I sure couldn't be like some that eat Carb free!

Almost time to gown up and go in!

And then I didn't do my math for the food-fast, in relation to my scan appointment time, so I wound up not being able to eat for over 16 hours! OMG, can't remember being that hungry in a very long time. The night before, I had dinner and stopped eating around 8pm, then when I got up around 8:30/9am, I realized the window for eating had closed, as I had to fast 6 hours prior to the 2:50 Scan. Then I was involved in the Scan prep, which included IV radioactive glucose prep for about 30 minutes, then the scan itself, so that brought me to about 4pm! So do the math on that... I hadn't eaten since 8pm the night before! Sorry if I'm sounding like a whinny wimp, but my system has changed so much since myeloma treatments, that I don't do well starving anymore.

Done!

But I of course survived and bolted to our favorite Deli after my appointment, and ordered half the entire menu for take out :)) Wow, I just did the math on that, and... help me out here... 8pm to 8am = 12 hours. Then only water from 8am to the end of the Scan, at 4/4:30 is another 8 hours. So if I can add, I fasted for 16 hours. Silly me, guess I should have gotten up earlier, and pounded down some food before my fasting window closed. But, ugh, I just can't eat first thing in the morning, when I wake up. Oh well, I survived and I WILL KNOW THE RESULTS OF THE PET CT SCAN TOMORROW, April 9th, at my Dr appointment, prior to my monthly Darzalex infusion.

If you recall from my previous posts, Myeloma's on the upward bound again, and I am VERY CURIOUS what the Scan shows, and what my monthly Labs show, and what our next move is, if Myeloma is continuing to misbehave! My preference is to go back to more regular Darza infusions, as I was doing so well on the bi-monthly schedule. I wonder why the researchers didn't include more instruction and protocol in the studies and literature for WHEN Darza stops being as effective on the monthly protocol.

Ironically, while I was in the Scan, I received email notification that my 21 days of Pomalyst had, predictably, plummeted my fragile immune system, and again I'm Neutropenic. Such a funny word, but related to our WBCs and Neutrophils. My WBC is 2.0 and my ANC a lowly .81. Boooo on that, but Zarxio Neupogen injections to the rescue!

Hello 3 days of immune system boost 

But........ here's where things got a little complicated for me...
During the scan, they wrap you up like a mummy and you have to lie perfectly still for the entire Scan! I'm not claustrophobic or nervous for things like this, but isn't funny how when you CAN'T do something, of course body wants or needs you to. So what wound up happening to me, is that I felt my back muscles becoming pinched. Normally one would just move a bit and readjust, but I knew I couldn't so I stayed quiet and still, hoping my back wouldn't seize. I felt stiffness when I got up from Scan, but felt walking to my car would loosen it up. Well the next day, it seemed to stiffen and pinch a bit more, and by Saturday, I was really really pinched and sore, and really began to limit my movement and bending over... 

But wait... could this soreness be Neupogen Zarxio related Bone Pain?? Oh boy, here we go agian... what symptom relates to which event or medication. I did shot #1 on Friday, #2 on Saturday and just didn't know if my tight and tense back muscles were Thursday's Scan related or Zarxio related. But dang am I so sore, stiff and Advil, Tylenol, didn't really have much effect in deadening the awful immobilizing pain. And what a time to have this, right in the middle of celebrating my daughter's big birthday! C'mon myeloma, can't you ever cut me a break?? So knowing we had BIG plans for Saturday night, it suddenly occurred to me, as I finishing up in the horse arena, hoping raking might loosen me up, it occurred to me to take one, just one 4mg Dex steroid pill as an anti-inflammatory. I NEVER take Dex late in the day, as I know it's effects will keep me up all night, but I was pretty desperate for pain relief at this point. So I took the one little Dex pill, and did get a little relief, but was still sore for Saturday night's festivities and still now as I write this... 

But wait... there's more dramatic news... 
Here's what I did so very very very out of character for me... and so very very very stupid and dangerous since I'm so incredibly immune compromised, and don't have an immune system to fight off all the awful human cooties out to bring me down... I tossed my normally unwavering avoidance of human crowds, and public places at all costs, and went to a Country Line Dancing Club with my daughter and her friends for her birthday! YES, WHAT WAS I THINKING!! Well I was thinking... I JUST WANT TO HAVE FUN AND BE NORMAL! I'm such a social person, that being restricted by myeloma's side effects really gets to me after a while. I feel like I am missing out on so much of life. So much of life that used I to participate in. But then again, I just hate being sick, so I just stick to being super ridiculously cautious 90% of the time, and it has really paid off, in terms of me avoiding serious illness. Here's my recent labs showing my compromised immune system:

Barely gettin by... 

Oh yikes, look at that ANC!

But I went, kept my antibacterial wipes handy, tried not to hug closely, did not shake hands, was super cautious with everything I did... but seriously, OMG, the crowd eventually became huge! Hundreds of people by late night. And as you know, being in a loud music venue, you have shout to talk or lean in when someone talks, and I just cringed thinking of all the COOTIES I WAS BREATHING. Yuk!!! ... If I remain well this week, after cootie incubation time, it will truly be a medical miracle! But we had a blast, I stayed out late, and laughed till my sides hurt, and my voice was hoarse, as my back continued to hurt like none other... 


This picture was early in the evening, when they were doing line dancing lessons, before the zillions of people eventually came. There wasn't even room on the dance floor, it was so crowded! So many people, so many cooties. But sooooooo fun with my daughter and her friends! When we got home, I couldn't wait to shower for hours, trying to drown the cooties, but of course that was too late, as just being there, I inhaled so much air borne yuk! I just kept shaking my head at myself, telling myself how stupid that was, especially right off Pomalyst, being on Zarzio injections, and so completely immune system depleted! Yep, I'm nuts. 

Just a few of the groupies, zillions more all around!

And then today, we all went out to brunch, but this was just a much smaller group, on an outside patio, fresh air, and I didn't do the beautiful brunch buffet. I didn't even go look at it, as I didn't want to torment myself. I order only well cooked food when eating out, avoid all fresh foods that can potentially contain unwashed or embedded bacteria, and don't do drinks from the ice machine, as I've read, heard that is swarming with bacteria... so far my persnicketiness has worked, as I am rarely sick, beyond the annual flu season challenges. 

Wow, I'm so lucky!! 

BFFs since elementary school :))
The panda necklace I'm wearing is vintage 1990ish.
Panda's were Alissa's theme since a baby xoxo

Happy Birthday to my baby girl xoxo


So my loyal readers and friends, those are just the headlines, as there's so much more detail within all this detail, but it's super late, 4.8.18 is over in minutes and tomorrow is a big day. I'm counting on hearing the results of my PET CT Scan, seeing my the results of my recent labs, telling of myeloma's status, then it's IV hook up time for Darzalex. And yes, I am looking forward to the "calm" of the chemo lab, where Benedryl might knock me out, as it battles back the roaring 20mg or 40mg Dex roids I'll take in the early morning. Many Darzalex recipients are anxious to try out the new shorter infusion time I've read is the trend now, but not me, I like the longer, safer, slower infusion time, not to mention, the possibility of sleep... 

Thank you for reading and caring about my life and story. Knowing you're out there, looking forward to my updates, gives me the motivation and commitment to keep on posting :)) Please let me know who you are, where you are, how you are, and how my posts impact or affect your life. I truly enjoy your comments, and you sharing your story with me!! 

If I have BIG RESULT NEWS, I'll post again before my next "on the 8's" :)) 


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



Wednesday, March 28, 2018

Hello Spring, Body Scans and Birthdays!

Hello 3.28.18


It's a beautiful Spring day today, and I am thrilled to be alive. Not feeling terrific, but not feeling too bad either. If you recall from my previous updates, Myeloma's on the upward move again, so last Dr appointment, we discussed raising the dose level of Dex steroids, Pomalyst, and possibly going back to more frequent Darzalex infusions. But if you know me, I put on the brakes, and opted to up doses one med at a time, so I am able to differentiate which side effects change or increase from which medication. 

Some might say I try to be too in control, or self "doctor", but no, I just want to know, in as much as I can, what is happening to my body and why. I'm analytic and a knowledge seeker. Just my nature. So we opted to increase the Dex steroids from 20mg per week to 40mg per week. I took the 40mg this past Sunday for my son 's birthday celebration, as I try to plan my "roid rage" for fun times, or when I can "enjoy" the extreme up, and blast of temporary energy I get. I also plan for the yucky crash, and make sure to not plan anything for several days after taking Dex. 

I'm so grateful to be here to celebrate another birthday with my amazing son. Who knew, I would be such a "medical miracle" and still be here 8 years later. Yes my type of IgA myeloma is complex and "high risk" - "aggressive", which requires constant, continual treatment, but lucky me, all the chemo and immunotherapy regimens I been on since diagnosis Dec 30, 2009, have been mostly tolerable, and Have Kept Me Alive.

I continue to be amazed and fascinated with all the variations of Myeloma, the variations of continual or intermittent chemo treatments, the wide variety of side effects, and the crazy life alterations all the myeloma warriors out there experience! Some are completely debilitated by myeloma. Some go years without treatments. Some are diagnosed, treated and go on with life for months, years without meds. Many like me, are on continual, constant myeloma killing meds. Some have extreme painful physical symptoms and side effects. Some blast through treatment after treatment, with little success. Some have extreme bone issues and bone pain. Some are diagnosed, treated, and sadly, their body fails them, and myeloma wins....  Myeloma is an awful cancer, yet so fascinating...

You haven't won with me yet myeloma. You haven't entirely stolen my life.
Look how lucky I am:


Happy 32nd Bday to my amazing son Scott!

Seriously, one lucky momma here :)) 
Alissa's big 30th Bday is next! 
Whoohoo! I made it! 


So my NEXT BIG NEWS will be on my next post, as I had a Bone Density Scan yesterday, and will have my first Pet CT Scan next week. I've had annual Skeletal Scans, and previous Bone Density Scans, but never a Pet CT Scan. I've had an MRI, but I think that was prior to my Myeloma diagnosis. I didn't realize the diet and fasting prep for the Pet Scan, and that they administer radioactive glucose. Hope my body doesn't freak out from that. If you've had one, please let me know how it went for you, and what it feels like. 

I have my next Dr appointment and Darzalex infusion April 9, so that's when I should know the results of all these tests, how the 40mg Dex is affecting myeloma's surge, and if I'll need to increase Pomalyst and or Darzalex too. Wouldn't it be nice if the scans show "nothing", and that my existing Lytic Lesions haven't changed, and there are no new ones, or no new bone deterioration. Wouldn't it be super cool if just Dex 40mg sent a message to myeloma, and my numbers plummeted. But who knows. I really don't "worry", I just wonder what my body is doing, why all this happened, and is happening, and what we'll do about any "bad news". It is what it is, and what myeloma does with me, I don't have much control over. But, thankfully, my wonderful doctors and I do have control over the attack plan...  Can you even imagine being on cancer treatments for 8 years... so unreal! 


Hope all is full of Spring beauty and good things in your lives.


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




Sunday, March 18, 2018

You Can Stop It Now Myeloma

Hello 3.18.18

Here I go again... thinking I wouldn't have any "interesting news" to share... but I do, I always do, thank you Myeloma.

My unrealistic, dream-world thinking is that this roller coaster ride will chill, and my life will "just get back to "normal"! Ha ha.
Yep, Myeloma is Forever. Treatment is Forever. Incurable is Forever.


This past Monday, I had my monthly Dr appointment and Darzalex infusion. But prior to Monday, I ventured out a bit, to a few tiny social events.  Now that it seems the worst of the flu season is passing, I'm getting braver about going out and about. I'm taking a few chances, that I didn't take in January and February. Although I'm always borderline Neutropenic, or fully Neutropenic, and could live in a "sanitized bubble" forever... it hits me:   I Have To Live. I Can't Wait. I Can't Postpone. I can't live hoping things will magically get better, or be different in a week, or a month. Now Matters. I can't postpone doing things any longer. When I feel halfway ok, I gotta get out there and live life.

So I went to a few events. Just out to eat events. Nothing big, like a germ free, medivac private jet to Hawaii lol. Minimal crowds. Just out to eat, celebration events with colleagues and friends. I mention this as I was later surprised and sabotaged by my ol volcanic GI acting up. Surprised, because fortunately I don't have days and days, weeks and weeks of surprise diarrhea anymore. I left that "behind" (lol) with Revlimid.

Yes, I've been a bit spoiled this past year with Darzalex, Pomalyst, Dex with a somewhat predicable "crash". Generally on infusion day, I'm fine, as I'm all loaded up on steroids. The following day I'm generally ok too. Sometimes though, late at night on Day 2, the "cleanse" begins, but for sure on Day 3, I know to stay home, close to "porcelain John". Then for several days, my body tries to process and regulate all the meds. I never know what to expect, regarding which side effects will hit, and how intense. Often by day 4, 5, 6, I get tingly, prickly, fever-ouchy skin pain, sometimes a sore throat, sometimes headaches, hot flashes, and always, always extreme fatigue.

But (lol) since I was on my 1 week Pomalyst break this past week, I didn't expect any side effect drama. Yet surprise GI drama came my way. I mention all this, as after each social event, I spent the rest of evening in the bathroom paying for it. Unfortunately, I was surprised by another "cleanse" Monday morning, right as I was trying to leave for the chemo lab! Why is all this worth mentioning... well, when I finally arrived at the chemo lab (a little late!), after taking a swig of Imodium at home to insure I wouldn't have any "disasters" on the commute there, I wound up somewhat dehydrated, and my nurses had a challenging time, finding a happy infusion vein. Three sticks later, the hydration bag is flowing, Benadryl is pushed, and soon Darzalex is flowing, an I'm fully "corked up" :))



Some of you reading this little adventure might be thinking, "Oh big deal Julie", "Myeloma has so many bigger challenges"! I agree, but because I hadn't encountered this for a while, it totally took me by surprise. I've recounted so many (scary hilarious) volcanic GI stories throughout this blog, that truly this recent reality was nothing in comparison, but it's a telltale sign of the news I found out during my Dr appointment...

Yes, myeloma's on the move. In the wrong direction. For several months now my IgA has been creeping up. As I make the associations now, it makes sense. I was sick in Nov, Dec, Jan. I've been more fatigued. I've had more side effects. Headaches, backaches, extreme fatigue, and now the diarrhea seems to be a thing again. All these represent side effects I experience when my numbers escalate. But to keep everything in perspective, the IgA climb is minimal compared to where it's been in the past, so I am not inclined to panic at this point.


So prior to my Darzalex infusion, my Dr and I discussed my upwardly mobile IgA, and what to do about it. If you've followed my blog for a while, you know I'm a minimalist and I don't like to treat "aggressively". I'm inclined to try medication changes gradually, and hopefully "preserve" their longevity-effectiveness, rather than go aggressive, high dose, and burn out my options fast. My Dr suggested upping the Dex steroids to 40mg, and upping the Pomalyst dose from the current 2mg and 3mg, to just the 3mg. What do you think I pushed for? Yep, one or the other, not both, as I always like to identify the minimum that works. If we change 2 things, we won't know if it's the Dex increase or the Pom increase, affecting things. Additionally, there is concern with high dose Dex causing glucose-sugar level increases, and I certainly don't want to invite Diabetes into the picture. We also discussed going back to bi-monthly, or every 3 weeks Darzalex. 

Fortunately my M Protein is still not quantifiable. 

And there's more... In addition to the 3 sticks to find a vein, my nurse also surprised me with a finger stick for my A1c, glucose-sugar level (I think this is what it's called?)... heck, I don't know, Diabetes has never been an issue for me, thank goodness. My level was 112, so I'm ok now. We'll see what 40mg Dex does this coming month. As a matter of fact, now that I'm writing this, I think I'll start today. Again, seriously not a huge deal to me, as for initial treatment in early 2010 forward, I was on... get this.. 40mg steroids, 4 days ON, 4 days off, for 4 months. I was in such "shock and awe stunned mode" back then, I don't even recall how it affected me. I think I was super functional on the 4 days On, but I do recall feeling quite yucky on the crash days. But before the crash got too awful, it was then time to pound down 40mg again, so I quickly felt ok again lol! And I've been on 40mg Dex weekly many times throughout my 8 years of treatment! 
Oh myeloma, you are quite the adventure. Quite the UNwanted adventure... 

It's always a party in the chemo lab! 
Karon, Karen and me

Finally, I started my monthly 21 day cycle of Pomalyst a few days ago, still at 3mg alternating with 2mg. I'll try the 40mg Dex steroids weekly, and we'll see in a month what myeloma has to say about this. Hopefully, high dose steroids will put those misbehaving myeloma cells in their place, and all will be ok for a while. If not, we'll see if upping Pomalyst or Darzalex is the next fix. What's your opinion? If anyone reading this has gone from the "normal Darza protocol" back to more frequent infusions, please comment and let me know your story, and outcomes. 

Although myeloma is on the upward move again, I always count my blessings and good fortune that I have the Quality of Life I do, and I'm here to tell about it 8 years later. Truly, my life is amazing, and I am so grateful for the high quality medical care I've had. Which reminds me, my Dr also ordered a Pet Scan and Bone Density Scan for me, so I'll be doing that in a week or so. Here we go again... I'll have lots to update you on in my coming posts. So I'l just shut my trap now... I'll always have news and updates. I'm A Cancer Patient In Treatment For Life...



This little pup is so hilarious, so innocent, so happy, so unaware of the seriousness of life! Found him destroying a feather duster last night. Looked like an Ostrich murder scene! 

So happy, so silly, so innocent.
Just love our newest little rescue boy :)) 



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




Thursday, March 8, 2018

Marching Forward

3.8.18

Hello March! Yes, March already! It's Myeloma Awareness Month. When I was first diagnosed, not many people I encountered knew what Multiple Myeloma was, (me included). But as my 8 years living as a myeloma patient have passed, I meet more and more people that have heard of myeloma, or know of someone diagnosed with myeloma. As I write this, I shake my head, forever having a difficult time connecting me to myeloma. It will always be an out of body experience for me. Still don't get how it found me...



I did Labs yesterday, and will find out my myeloma stats on Monday March 12, when I have my next Dr appointment and Darzalex infusion. But I am able to see my CBC stats, organ function stats, and my Beta2 Microglobulin online. Here they are:


Most of my CBCs are pretty good, except of course my WBCs. 21 days of Pomalyst, 20mg weekly of Dex steroids, monthly Darzalex, and of course the ravages of myeloma, do my immune system in.


Additionally my ANC is pretty low at 1.4, but hopefully not Neutropenic status... we'll see if my Dr recommends Neupogen Zarxio shots for a few days...


And finally, this was a tiny happy surprise, with my Beta2M going down .1
Not much, but I'll take any downward direction that comes my way :)
Crazy how high it was in 2009 at Dx @ 4.6, then in 2016, @ 4.7, then 4.6 just last year, prior to starting Darza, Pom, Dex! Still outside the "normal" range, but staying steady low-high for a year now, thank you triplet cocktail. Where did you come from myeloma, and how did you find me... Grateful for 8 years and counting, and for the "relative good health" I do have. Fatigue debilitates me. Headaches surprise me. Aches and pains annoy me. But thankfully I don't have the extreme GI issues I did with my previous treatments.

Life is busy with our new little rescue, who is more of a puppy than I expected. So adorable, so full of life, so healthy, so happy, so jumpy-bouncy, so much joy to share. He's doing great with potty training, as long as I make sure to let him outside regularly when he's inside. At night, I have him cozy in a soft tent-crate, and he seems to love that, and sleeps all night without a problem. When the weather's nice, all the doggies are outside for most of the day, so that makes it easy and natural for them.

I took little Jack to the Vet for his complimentary shelter rescue health exam. So funny how my life is so medical oriented on so many levels. He did great, and is in excellent health. Isn't he just so cute in his doggie seat-belt harness :)

Perfect little traveler and patient




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





Wednesday, February 28, 2018

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!



Sunday, February 18, 2018

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 

Tuesday, February 13, 2018

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 



My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!


What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)

Infections

Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.