Wednesday, August 8, 2018
Thursday, August 2, 2018
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.
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!
Pneumocystis jiroveci pneumonia
(previously known as Pneumocystis carinii pneumonia or PCP)."
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...
Saturday, July 28, 2018
Yes there was a time in my life when I was well. Well all the time. Took my body and body functions for granted. Living a "normal" life, with only the "regular" annual bugs parents and kids get. I really never thought about illness or sickness, only when we were, and then we all got over it.. Never thought about what it would be like to feel "sick" and exhausted all the time, and never occurred to me to "plan" for being sick.
Now that's all I do. Feeling sick, being sick, thinking about illness and sickness, avoiding being sick from unplanned cootie contamination, or planning when I'll be "sick" from medication side effects. Even after 8 and a half years, it's still so strange to for me to "have to" focus on, plan for, be aware of sickness and feeling sick. Just so weird still. Spins my head being "sick" each week. Sick for me is unrelenting fatigue, achy, weak muscles, joints, nerves, bones, headaches, bloating, swelling, some GI issues, all around malaise and so little energy. And then on top of the weekly "predictable" medication crash, there's the surprise sicknesses, or new yucky side effects, new pain, fevers, from myeloma morphing, mutating all the time, and daily, weekly, monthly, myeloma treatments.
I'm still reeling from my July 3rd broken rib incident, and then the awful, horrible, painful, pain beyond pain, high feverish reaction to my first Zometa infusion July 10th. I finally began to feel better this past week, and 40mg of Dexamethasone steroids helped. After about 9 days the fever was finally gone, and slowly the crazy achy bone, muscle, joint, nerve pain lessened and subsided. I still can't believe all this happened to me. I thought I'd have the "normal" Zometa side effects for a few days, not the EXTREME torture I had for 2 weeks! I just don't see myself as a "sickie" and I just can't stand feeling unwell all the time. Just not me!
So just when I started to feel relief and think I'd get a break this last week of July, before my next round of chemo July 30th, boom!, body sabotage hits me again. My blood tests reveal I'm Neutropenic AGAIN. Yep, did my monthly Labs yesterday, July 27, and in no time heard from my Dr that I'll need to start 3 days of Neupogen Zarxio injections, as my WBC is 2.0 (4 - 11 normal range), and my ANC is .71 (1.80 - 7.70 normal range), yes "point" .71
Whoo hoo. Isolation Bubble Time... again..., no events, no eating out, no crowds, no fresh fruits and veggies, etc etc etc Hello Neutropenic life, Neutropenic diet... Time to grab some belly fat, and stick that needle in. Just like tossing a dart at close range :)) Get in my cells magical Zarxio and pump up my immune system!
What the Heck! Medication to build me up
is derived from sickie cooties!
Ugh, have to read up on this for sure!
Forgive me if I sound whiny, as I am always super aware of how awful "It Could Be", and how challenged so many of my myeloma pals are, not to mention 3/4 of the world! But all this affects me so much, as I was so well for 48 years of my life. And just as I was getting over the broken rib pain, and the crazy Zometa reaction, our A/C died when it was 110 for days, my dryer tried to start a fire and burn our house down, I walked into a black widow web, and was almost bit, and one of my horses was on the verge of Colicing in this horrible HOT weather, and I have more and more "caregiving" tasks for my ol hubby, as he too, is being sabotaged and betrayed by his body...but that's a whole 'nother blog...
As a Counselor for 35 years, I was focused on helping others analyze and solve their issues, and I was super focused on my family life, so I didn't focus on me. I didn't need to. Now, sadly, myeloma "forces" me to constantly think about my situation, and constantly "feel" all my physical side effects. I'm "sick" of me and my issues... 8 years, 7 months is a long time... soon 8 years, 8 months... is a long time to be focused on staying alive, a long time to be treating incurable cancer, a long time to feel unwell, and a long time to always be surprised by unwanted side effects... 8.8 years... wow... waahh, waaahhh...
Anyway, here's my Neutropenic labs:
Wednesday, July 18, 2018
Really Body? What's up with all this torture? What did I ever do to you to deserve this backlash? Remember,... at this time in my life, we were supposed to be PLAYING, winding down my career, and chillin for a change? I won't even list all my mid-life, second half of my life goals and plans. It's just waaaaay too sad. Never ever, did I ever think I'd be faced with all the challenges I am. Mine and my husband's...
Everyone's Myeloma, or chonic, incurable, forever illness attacks differently. Everyone handles illness, pain and challenges differently. Myeloma faked me out in the beginning. Faked everyone out who knew me and saw me in public. No one could ever understand how sick I was on the inside, and the intensity of the monster growing daily inside of me. I didn't get it either or comprehend what "aggressive myeloma" meant back then. Now I do.
Immediately, after my Dec 30 2009 diagnosis, I was put on Dexamethasone steroids. Never had been on steroids in my life, so the fun ups, and the crazy downs, were a new ride for me. Back then, for a month, I started on 20mg 4 days on, 4 days off. But when when my Dr tried upping Revlimid from 10mg to 15mg, I developed the dreaded Revlimid body rash. So from February 2010 to end of May 2010, I was on 40mg of Dex, 4 days on, 4 days off. THAT'S 160mg OF STEROIDS PER WEEK FOR 4 MONTHS! Wow!!
As a result of this high dose, the many "typical myeloma side effects" remained "hidden" to me. And with all those steroids in me, Revlimid didn't stand a chance of causing me "volcanic GI issues", as the steroids corked me up! So thanks to steroids masking symptoms, I was thinking, "hey, this 70% myeloma cancer thing is "tolerable", and I can still continue on being "Julie"" LOL LOL
I then had one dose of IV Cytoxan, which woke me up and made me FEEL LIKE A SICK CANCER PATIENT for 24 hours. But after that, I sailed through the Stem Cell Transplant prep, harvesting 9.5 million stem cells, and the first few days as an inpatient at City of Hope Hospital wasn't bad at all. But midway through the process, when THE HIGH DOSE MELPHALAN CHEMO KICKED IN, I TRULY LEARNED WHAT A BEING A SUPER SICK CANCER PATIENT WAS ALL ABOUT. That was challenging beyond all words.
After my recovery in August and September, as I slowly crept back to beginning to feel like Julie again, and finding out that my SCT process was successful, I began to think I could put it all behind me, "and get back to my "normal" life again" LOL LOL. My son buzzed me October 1, 2010, and that was great symbolism of my new beginning! I remained on 5mg Revlimid maintenance for 2 years. I was very immune compromised, still extremely fatigued, and had GI issues, aches, pains, etc, but overall had a good quality of life that allowed me to get back to 50% of my life.
My Dr then wanted to try a "medication holiday", so I went off maintenance Revlimid. Within a year Myeloma roared back, late (2013) and the rest is history.
For 7 years, any xray, or skeletal scan I did, showed NO BONE INVOLVEMENT. I was a little snarky about this, as I always thought "I was different". Shame on me. Then my first visible lytic lesion was seen in my annual skeletal scan, April 2017. Of course it was a "Hole in my Head"!! A hole in my skull. Of course that's where my first lesion was seen. My myeloma cells definitely have a sense of humor with me! I didn't panic or worry, as me and my Drs seemed confident that was the "only one".
But a year later, April 2018, I was sent for a full body Pet CT Scan. If you've been following my blog, you know the dramatic and shocking news that the results brought. I think my Drs have "regret", or feel bad that none of my Drs had ever requested an earlier baseline Pet CT Scan for me. I'm a little upset it wasn't done sooner, but then again, "Ignorance is Bliss", and I lived for years thinking my bones were strong and "holeless"! My treatment meds probably wouldn't have been any different, just that Zometa may have been introduced years ago? Who knows and I don't look back with regrets, as perhaps not knowing this news, helped with my positive optimistic fighting attitude. Who knows if all my "INNUMERABLE" holes just grew in one year. Probably not possible. With the extensive amount of holes I have, and with terms on the scan result report mentioning something about lesions "treated", I've most likely been "holey" for sometime now. Thinking back over the years, I do recall several Drs mentioning that I should probably do Zomenta.
WELL I DID, and ZOMETA I HATE YOU! I hate what you have done to me this past week. I hate the pain and suffering you caused me. I hate the awful, high fevers (101+, 102+, 103+ for 3 days), I had to endure. And I still have a fever over 99 daily, some days over 100! 8 days so far, with today's reading, 100.9. I hate the awful, deep, painful, searing, pounding, slicing, piercing, electrical current pain you sent throughout my entire body, and weirdly all up and down my left side butt to lower leg. Crazy deep pain that drives me batty. I try to walk it out, stretch it out, sit it out, lay, lie it out, liniment it out, stamp it out, pound it out, pain pill it out, and it's relentless! Especially at night...
I read all about the side effects.Talked to tons of myeloma patients about their Zometa experiences. I did all the right things to "prevent extreme side effects". My infusion was 30 minutes long. My nurse did hydration before and after. I asked her to finish the rest of the bag, after Zometa was done. I hydrated like a fish. I always hydrate a lot. As a matter of fact, I'M SICK OF HYDRATING. I'm so tired of trying to do the right things, eat right, drink right, move right, blah blah blah. I did all the right things, AND I STILL HAD HORRIBLE SIDE EFFECTS, AND I STILL HAVE A FEVER, DAY 8! I still ache all over, and have a headache. I rarely get headaches. And when I move, I get surprising shocking twinges all of a sudden.
I am better, pain wise from a week ago for sure. A little more relief everyday. But yesterday, I knew in the middle of the night I still had a fever. When I took it, it was 99.8. Dang it! Thought I was done with fevers. But the fever yuckiness feeling is indisputable. Felt the same telltale signs again today... Yes, a Zometa fever for 8 days now.
Early yesterday, my husband had cataract surgery scheduled in the morning. I never feel well in the mornings anyway, and the fever was just complicating everything. Of course all week I "worried" that it was going on a week with a roller coaster fever, but each day I kept thinking it would disappear, and so would my awful symptoms. Tylenol and Advil of course masked the fever symptoms, and only when I let it's affects wear off, did I know the "real truth" about my status. All this was not what I had heard, not what I had read, not what I expected regarding Zomenta infusions. Zometa is not supposed to be a "big deal". It was a HUGE deal with me.
I worried about the length of time I've had a fever, so I had our super helper daughter go with Jim to his surgery, and I went to Urgent Care. They always apologize for the limitations of what they can do for me, as my situation is so complicated for Urgent Care, and I am always encouraged to go to ER instead. Um, Nope! Further away, I feel lousy, and waiting in ER! OMG, no thank you! I had a very caring UC Dr who set me up for many blood tests, bacteria tests, and a chest xray. She also contacted my Oncology Office, letting them know of my situation.
I was there for hours. Hours. I didn't bring my pantry and refrigerator with me, so midway through, I'm starving. I did have enough water in my car, so I kept hydrated. Funny though how I was in eyesight of the Vending Machine, but yuck! All the human cooties on that, grossed me out, no matter how hungry I was!
My labs came back ok. Not much different than they "normally" are... EXCEPT my WBC was skyscraper HIGH (for me) of 6.8. Ok, for most of you, that's normal, and good. My WBCs barely get out of the 2's... so to me, something was up. Must be a crazy battle inside me. Having a strong WBC, wow, my cells must partying it up. I pictured the newly powered whites beating up the myeloma cells, and the Zometa in there fueling the fire. I thought hmmmm, wonder if all my EXTREME PAIN and fevers for a week was due to Zometa doing something "good", powering up my system, infiltrating my bones, boosting up my plasma cells, and pummeling the myeloma cells?
My xray showed clear lungs, no pneumonia. Still waiting on the bacterial cultures. But I'm not worried. And thankfully my UC Dr did not want to give me antibiotics unnecessarily. I was beat up from being there for hours, but very appreciative for the quality care.
But I still have a fever...
So where does all this insanity leave me today, 8.18.18... still with a 99.4(am), 100.9(pm) fever, that of course varies with when I take Tylenol or Advil. The killer bone pain has subsided, but I tingle and get twinges all over. I feel weird feelings everywhere, even my teeth and jaw hurts periodically... great, here come's ONJ, my greatest fear with Zometa.
Who knows why I had such an awful and excruciatingly painful reaction to it, but as I said in my previous post, I just don't know if I can do it again... But, If, If, If, my myeloma labs I'll do next week, (and then see at my July 30 appointment), show that Zometa had a dramatic affect... maybe, just maybe I may "elect" to SUFFER again in several months. And yes friends, I will grow up, and ask for stronger big girl Pain Meds!!! And to those that have mentioned Xgeva, I will inquire about that too. But for now I am just reveling in feeling a tiny bit, yes a tiny bit, better each hour!
Friday, July 13, 2018
7.13.18 - Friday the 13th.
It's so ironic, and so fitting that I've had awful, pain beyond painful pain, these last few days, as 8 years ago this month, I was at City of Hope Hospital, experiencing all the yucky Melphalan chemo, Stem Cell Transplant Crash side effects. I was in the middle of the process, with my CBCs near nothing, feverish, trying desperately to survive and heal, fighting to become me again, desperate to get from the hospital to home.
So how fitting I had my first Zometa infusion on Tuesday, along with finding out about my Broken Rib. Of course my "friend" Dex Steroids propped me up that day, but it was all downhill from there these last few days, and I thought I would never come out of the pain, fever and awful physical suffering that I endured from early Wednesday through all of Thursday, and Thursday night, and into today Friday the 13th, and I suspect onward for several days...
I wrote the following thoughts early this morning, after 2 1/2 days of the worst bone, muscular, nerve, feverish pain I have experienced in a very long time, if ever? I don't know... I have so many incidences of pain to recall now, I can't remember...
True (unfiltered) Confessions of a Tired Cancer Warrior
Thank you for reading and being loyal blog followers!
Tuesday, July 10, 2018
What a day today! OMG! Getting my new bone strengthener Zometa IV, and then down to Urgent Care for consultation and Xrays on my painful Left side rib chest area, where I think I strained, sprained, tweaked, pulled, spasm-ed a muscle! I really didn't think I could have broken or fractured a bone from repressing, suppressing a sudden choke, cough, sneeze when driving home from my Darzalex infusion last Tuesday...
But what was I thinking this last week with all the crazy intense pain I endured for a week so far? Well I wasn't thinking smart, I was in denial. I really didn't believe, me cowgirl Julie, could "break" a bone. I always secretly think I'm Dominating myeloma, Not myeloma dominating me. Honestly, even with all my Myeloma damage, I really didn't think it was, or would be my story. Blame it on being "Blonde" or the "chemo fog" :))
Yes, just slam me with reality Xray results, as I do in fact have a Broken Bone! Never in all of my lifetime, broke anything. Even with all my outdoor sports, horse riding activities and events with my kids! Never ever had I broken a bone. Well I did, I broke, fractured a left rib with my crazy swallowing water the wrong way, then trying to suppress, repress the ensuing all-in-one choke, cough, sneeze, so I wouldn't blast water all over my car's dash! I broke my rib doing that! Seriously, laugh with me... I'm "dying laughing" here!!! :)) See my previous post for the ridiculous story. Next time, actually hopefully never another next time, but next time, I'll spit that water out all over whatever or whomever is near me :))
I shouldn't be surprised, right. I am riddled with Myeloma bone lesions, holes, holey tumors, lytic lesion tumors from my skull to my lower legs! Maybe to my toes? Holes to my toes. LOL. But the irony friends... Here I was at my very first Zometa IV treatment to Strengthen my bones, and then a few hours later, I find out I have bizarrely broken a bone, a rib! OMG, can my life get more ridiculous and ironic? Hello vicious myeloma complications.
When consulting with the Urgent Care Dr, I candidly tell my story as if I was talking about someone else. I still feel all this just couldn't be happening to me! He and others tell me they, "can't believe how positive, up-beat, fun, funny", and in his words" with amazing energy" I am, not to mention I "look "normal" lol. As he reviews my complex medical records, he says it just don't fit the person in front him. I Quickly Clarify that I took 20mg of Dexamethasone steroids much earlier, "so you're getting the extra animated, fully energized, "Dexified" Julie today". I even cheated and only took 20mg today, as all this muscle wasting, muscle pains and strains side effects are concerning me regarding the high dose 40mg Dex. Indeed, the external misrepresents the internal disaster...
Yes, last Tuesday, July 3, I was driving myself home from my Darzalex IV infusion, and swigged too much water in one gulp, causing me to choke, and need to cough, sneeze and spit out all at the same time, and unbeknownst to me, by suppressing this craziness, just to save my car dash I break a rib! Really this did happen. I broke a Rib, suppressing a monster choke! Never again, I've learned the lesson about my fragility.
Then for a few days, high on 40 Dex, I have fun on July 4th, feeling the pain buried under the false pretenses of steroids, but I was still able to carry on. Did I mention, I even scooped horse apples in the arena, took care of the other animals, did some watering of our yard, which involved pulling the hose around, took our 27+ year old Box Turtle to the Vet to have his nails and beak trimmed, and did a zillion other "normal" chores around our house, etc... Until suddenly, Dex, Advil, Tylenol and Flexeril wore off, and reality slammed me! Ouuuuchie... OMG I really do hurt, hence my Urgent Care visit today. Dex steroids dulled the pain, but Xrays don't lie! I have a stikn broken rib!
Yep, loaded up on "fix that rib supplies" tonight. My kind Dr asked me what kinds of meds he could prescribe to help me out, and mentioned all the "big dogs". I thanked him, but said no thanks, as I didn't want to add a new Rx to the mix, that may cause some new side effect. OTC meds have helped out to this point, with the lovely Wintergreen scented patches and good ol Bengay! Can you even imagine if I had an upper GI reax to strong pain meds, and my body wanted to vomit? OMG the pain in the ribs, muscles trying to retch! I don't even want to think about it!
So thanks to Dex steroids, I'll get thru the night, if I can ever get sleepy lol, and I see what tomorrow brings. Will be interesting to see what, if any, side effects I have from the Zometa... please "cancer angels", look out for me...
And thought you'd enjoy the shock and awe of my 21 days of Pomalyst invoice:
And I remember seeing the retail cost of my Darzalex infusion around the same amount. Thank you awesome Kaiser insurance for keeping me alive!
Thank you for being a huge component to why I am still here :))
And huge thank yous to my wonderful Urgent Care Dr tonight.
One more point of gratefulness. I wound up seeing a bunch of my friends, colleagues, students, tonight, from my good ol college of employment of 35 years! Seemed more like a summer reunion today, tonight, then being at a medical clinic receiving jaw dropping news, say whaaat news!
Ok, Dex steroids, time to chill and let me go to bed... wonder what tomorrow and tomorrow will bring... May I please have a boring life for a while Myeloma...
That term... "No Pain, No Gain". Ha, Lie!! For me, pain is absolutely debilitating physically and mentally. No "gain" for me. Pain causes me to "rethink" my life when I am so incredibly miserable. I know pain has a biological, physiological purpose, to alert us there's something wrong, something going on... but geezzz, can't there be an "off" switch for it, once we get the message.
I remember all the pains I had from FUN things I used to be able to do. Outdoor sports, horses, playing with my kids, family trips, animals, etc. Muscular pain from that was annoying, and yes painful, but it has a positive cause. There is not positive purpose, except the physiological awareness-alarm, to this awful, take my breath away pain I've had since steroids wore off last Thursday, July 5th, my 8th SCT anniversay.
Here's what happened:
You can see from my previous post, I managed to have a fun 4th of July, of course because of DEX STEROIDS masking side effects from my chemo day before lol. But on the way home July 3rd, I caused a crazy, stupid, random injury to myself by swallowing water wrong!! Yes, swallowing water wrong! I always try to hydrate well prior to and after my Darzalex infusion, and speaking of that, I must grab a water bottle NOW to hydrate for my 2:00pm, FIRST ZOMETA infusion...
Anyway, on the way home Tues July 3, I took a big swig of water as I was driving, and managed to swallow it wrong, which for me, causes me to need to choke, spit out, cough and sneeze all the same time. This reaction has been exaggerated since my SCT, so something must have changed in my Esophagus? So anyway, in that split second event, I had to choose to spit out in my car, or suppress, repress the choke, sneeze, cough. Well I made the STUPID choice to repress, suppress, restrain that urge, and pushed down the cough, sneeze, choke, awkwardly swallowing the water. You know that feeling when you repress a sneeze. Bad for anyone, but super bad move on my part, as apparently sitting seat belted in, I managed to jar and shock my body into a horrible muscle spasm!
I immediately felt a shocking sharp, searing, tearing, stabbing blot of pain, pinching and ripping in to my Left side rib, chest area, under my bra. Absolutely took my breath away. I kept driving, tried deep breathing, adjusting my posture, and doing mini stretches at the red lights. (Yes, I routinely take the street route home after chemo just in case I am not ok, and can easily pull over). But thanks to Dex steroids, I didn't feel incapacitated at that time and continued home. For the rest of evening and into July 4th, I felt a deep suppressed pain, but it was definitely masked, buried deep, unbeknownst to me, ready to attack in the next several days.
The 40mg steroids I took Tuesday morning suppressed and masked the pain for about 48 hours, but I could feel the deep intense pain coming on, in the middle of the night, Thursday. By this time, I had already done 2 of the 4 Zarxio injections to up my WBCs, so I thought maybe the pain was exacerbated by that, or was being caused by what Zarxio Neupogen is supposed to do... grow more White Cells fast.
Late Friday night, I Googled Left side pain, and was alarmed that it could be my spleen or other vital organs, which is a side effect from Zarxio! I continued to read more about muscle pain, tearing, spasms, and causes, and the good and bad of steroids, as the pain intensified. I learned there is definitely muscle weakening and "muscle wasting" from steroids, and there's differences between all the different types of steroids, Dexamethasone being the strongest. It was too late to get myself to Urgent Care, so I took more Advil, and a muscle relaxant I've had on hand for times like this. Made me think of how many times since Myeloma, I've had excruciating muscular pain, tears, spasms...
"Prednisone is 4 to 5 times more potent than Hydrocortisone and has a longer duration of action, perhaps 12 hours or more. Dexamethasone is 40 to 50 times more potent than hydrocortisone and even longer-acting, 18 to 24 hours.
"Steroid myopathy is damage to the muscle fibers caused by treatment with corticosteroids, such as prednisone, cortisone, dexamethasone and fludrocortisone or overproduction of steroids associated with Cushing's disease. Myopathy causes changes in muscle fibers, including atrophy (shrinkage), lipid (fatty) deposits, necrotic (dead) areas and increased interstitial (connective) tissue between fibers. You may have severe damage to the muscles while the muscles appear normal in size."
"Muscle wasting, weakness with Dexamethasone
And in the middle of all this, when Advil quieted my horrible pain just a tiny window, I took our Box Turtle to the Vet to have his nails and beak trimmed. I had made and cancelled this appointment too many times, so between immobilizing moments, Dot the Turtle had his pedicure :))
(Sincere apologies to those reading this who have much more intense life challenges than me.)
Thursday, July 5, 2018
8 years ago Today, I received my cleansed and cancer-sanitized Stem Cells back into my Myeloma ravaged body. I am proud and thrilled to still be here, able to tell my story and be as "functional" as I am, thank you to modern medicine, amazing people in my life, and my body's ability to handle cancer killing chemicals!
I reflect annually, July 2 - 5 on my initial hospitalization for my Stem Cell Transplant, on July 5th, the Day My 5 Million little Stemmies were infused, and then for the entire month of July. Always I reflect. 24 7, I reflect on my life and my situation. Still so incomprehensible for me...
"On July 5th, 2010, at about 11:30am, after 2 days of high dose Melphalan chemo, and more supportive meds than I can remember, I received about 5 million of my own Stem Cells infused back into my cancerous body😮
In the days following, I became extremely sick, which is to be expected, but my body took it to another level, as my "infusion tubes", aka Hickman Catheter, became horribly infected. I had emergency "room service" surgery to remove it, and was on 5+ antibiotics simultaneously, and bags and bags of supportive meds and nutrition for the whole month of July 2010!😢😭
Here's a look back on my 8 years of reflective posts.
They're all so different, yet so similar.
Some years I was more reflective than others.
Some years I didn't write as much as I do now.
Half of 2012, 2013 I wasn't on Myeloma maintenance, and trying to be "normal" again. My Dr and I wanted to test my system and see how I would do without Revlimid continuing to battle on my behalf. Well, soon we found out Myeloma's stealth and vengeance, and back into treatment I went, Fall 2013, and have been there ever since.
As I've mentioned so many times before, the longer I live, the more intense my situation and status becomes to me. I guess my "cancer reality" just sets in deeper, the longer I survive and battle this monster, and "suffer the consequences" of continual treatments...
2017 Hospital Admission Day
2017 SCT Memories
2015 Hospital Admission Day
2015 SCT Anniversary
2014 Hospital Admission Day
2014 SCT Anniversary
2014 SCT Reflections
2013 Not much reflecting!
2012 Unsuccessful Celebration
2011 One Year SCT Reflections
2010 The Whole SCT Experience!
It was a very busy first week of July, as I had my monthly Darzalex infusion on Tuesday, July 3, then the 4th of July holiday was yesterday, and here I am, July 5th, exhausted from "playing" yesterday. Tuesday's steroids are now waning, and the Darzalex and Dex steroids side effects creeping up on me...
To be continued.... as I have test results to report, and Dr conversations to share... Thanks for reading and caring as you all do, and I'll post more medical details on my upcoming July 8th post.
Helpful Myeloma Links
- American Cancer Society- Multiple Myeloma
- American Society of Hematology
- Ask Dr Durie
- Cancer Therapy Advisor - MM
- Chemo Care- Drug definitions
- Health Monitor Magazine
- International Myeloma Foundation
- LLS- Myeloma
- MM resources
- Multiple Myeloma Research Foundation
- Myeloma Beacon
- Myeloma Blogs
- Myeloma Crowd
- Myeloma Symptoms
- Patient Power
- Support Groups
- Understanding Multiple Myeloma
My Story... How my MM was diagnosed
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!
My initial chemo regimen:
Pill form Chemo= Revlimid (10mg capsules)
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral
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?
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?”)
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.
The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.