Hello Friends and Loyal Followers!
What a life this has become for all of us! Who knew a vicious virus could be set free and do what it has done to so many, millions, billions of people, and have the all-incompassing-impact personally and globally it has. For my life, and for most of those with all the various chonic illnesses, the immunosuppressed, immunocompromised patients out there, Corona-Covid has actually "helped" us. Everyone, everywhere is now so acutely aware of cross contamination, how germs and cooties are spread, and how no one can take their health for granted, etc, The world is so much cleaner now in many ways, for all of us continual sickies. I feel so bad for all the lost lives and all those sick and battling with the virus, but I do wish we knew the actual "underlying condition(s)", and the "what" someone passed from. It would be so helpful to know what else their body was battling that facilitated the virus to ultimately take their life. For me, I have told my adult kids, MYELOMA must be on my Death Certificate, because no matter what else attacks me, to me, ultimately Myeloma compromised me and killed me!
I am happy to report that the High Dose Dexamethasone Steroids (40mg, 4days on) have helped me. I so wish I had done this daily back when I was suffering so much in June, July, Aug, Sept, etc, from whatever Elotuzumab-Emplicity did to my system. No way of ever knowing, well there is, but I would have to be professionally studied in research lab, to know how Elotuzumab/Emplicity morphed my system personally (as an IGA Lambda type myeloma)... I will always feel this treatment stimulated all the FAST growth of the "Extramedullary" masses, tumors, fractures, and painful body reactions that were "quietly" there, kinda dormant and slow growing. I just can't stop thinking about all that happened to me when we changed to that treatment (Dex, Pomalyst, Emplicity). I did so well on Velcade, Cytoxan, Dex for so long. Then I became "refractory" to Velcade, and boom came the incredibly awful side effects in the summer with the new treatment, Pain like non other, continual Fever unless I continually used Tylenol, Flexeril, etc. The growth of the soft tumors outside my bones still baffles my brain! WoW! How can I have a Mass in my R side Skull/sinus area, Mass in my R side Lung, Mass in my backside Abdomen. Radiation multiple times, for multiple weeks. So amazing what the body does and can survive. I now can reflect back to the most awful 2020 summer, and see all my symptoms and side effects and understand where they came from. They were growing all along, just the summer treatment extravaganza sped up the damage up exponentially! Just incredible how much the body can handle, create cellularly, and live with! Almost 11 years officially with Myeloma, but I KNOW I was smoldering for years before that... And yes, I was "Bubble Girl" long before the Virus woke everyone up with the very basic awareness that extreme cleanliness and avaoiding cootie cross comtamination, can save our lives! Ya, Duh!! No one laughs at me now, lol...
So at this time, doing the 4 days of High Dose steroids (40mg, 4days) has very nicely reduced the extreme bone and all over body pain, even when I overdo chores and crack or pull, or pinch, or damage something by mistake. Since the other day, I have had excruciating pain in R side ribs and upper chest lung area, and a bit of breathing challenges. I most likely did some damage pulling the hose around the yard, trying to do some hand watering of Jim's roses, beyond what the sprinklers do. I felt pain, and heard a little snap, crack sound, but I push on, and kept doing what I was doing. DUMB. Yes I listen to my body, but I am so "desperate" to be who I used to be... Independent and a "Do-er", I just keep on keeping on doing as it's so hard for me to be a sitting around sickie! The Dex and muscle relaxant Flexeril and Tylenol is my "magic" formula for relief. I learning it's ok to do pain relief medications, and not to just suffer. My parents raised us with the philosophy of power thru things, don't be a softy, and take very few meds. We sure didn't have pain meds in the house, and I remember suffering thru annual colds, fevers, flus, and maybe my mother gave me a low dose aspirin back then, but we never did the typical "make you feel better meds". And my Dad at 94 now, still has the same perspective. He is so well, and has very few medical issues. So amazing. But earlier in the year, he had some pinched nerves, muscle issues, etc, but he basically doesn't do any pain relief medication, no matter what I recommend or explain to him. He was "bumped" in the Costco parking lot, did go to his Dr, and did try the Methocarbamol muscle relaxant and was shocked how much it helped him lol. I am learning about my pain management everyday, and adusting everything everyday to feel ok, and hopefully pummelling myeloma at the same time. Why you wonder and ask that I don't just automatically take pain relief meds regularly? I am trying to preserve my other organs, so I can stay Alive! But after all this time, nope, not suffering anymore!! I'm learning :))
So this week was my Kyprolis break week. No IV chemo this past Mon and Tues, just the high dose Dex for 4 days. Mid to late Friday and most of all of Saturday are my so not fun crash days where I feel bloated, food tastes yucky, I spend a lot of time in bathroom for 24, 36, 48 plus hours, I'm dizzy, my brain is definitely "medication/chemo fog" mode, the Fatigue is Extreme, and the pain comes creeping back. But to me, that's a small price to pay if the high dose Dex is working. And besides, cleansing is good, right :))
I am slowly feeling better in the R rib, chest, lung area, and can breathe more deeply. It would be so amazing to be able to see inside my body, every time I injure, reinjure something, so I know what I've done to myself. It's a beautiful day out today, so my goal is to get outside in the sun. I want to do things, and not just sit around. But I have to accept I'm Not the cowgirl I once was, my body is so fragile now, and injuring myself is just not worth trying to keep up with ranch chores. Just getting outside is a challenge because of the extreme fatigue. So crazy for who I used to be. Fatigue is so disabling. It's such a different exhaustion from being "healthy tired" from doing life. The fatigue is also from my low low low CBCs. Hoping my "forced" good eating is building my platelets, hemoglobin, red cells etc. I did not do weekly labs this past Sunday, as I knew I wasn't doing Kyprolis this week. So it will be interesting to see how my CBCs are without Kyprolis.
My next regular Dr appt is at the end of the month, so no new Myeloma status labs yet. I always can't wait to see my status, wish I could do those weekly or every other week, "just to know"! Maybe I will add the Thalidamide-Thalomide to the Kyprolis Dex mix. Maybe I will brave up and add a newer immunotherapy. Maybe I will ask to add the Cytoxan back in. Maybe try Darzalez again in a combination I didn't do before. Fortunately I do have a variety options and combinations to play with. My Dr is very research, follow the current treatment recommendations oriented and prefers to follow the studies for medication options. This is great, and I appreciate her knowledge, insights, recommendations and sticking with what is "proven" per clinical trials. But I'm more of an open-ended, bend the boundaries thinker, who wants to avoid yucky side effects at all cost. So we will see...
Just keep your fingers crossed for me that this High Dose Dex is pummelling Myeloma. If it is, I'll do it longer, but then perhaps reduce the dose at some time. I have heard from many of you, that you do low dose steroids more often than the traditional "One Day Slam". And many don't do the super strong Dexamethasone, but instead do Prednisone or Medrol. I think doing steroids more often attacks the Myeloma daily.
Oh, and for those of you recommending I get a "2nd opinion", and wondering why I haven't previously, I have, and I am. First of all, I like being part of a broader team of multiple Drs as I have at Kaiser, secondly I have always had a 2nd opinion with my SCT Dr team. I haven't seen my SCT Dr for quite some time now, so I contacted the SCT BMT Dept at Kaiser-City of Hope the other day, and made an appt with the "Myeloma specialist". I've seen her briefly previously, during my SCT July 2010, but haven't had a full appt with her. Looking forward to our meeting early January 2021. But really, I am happy with my current Dr and I have access to any treatment I want. It's me that's "conservative" with my choices. It's me that is not brave enough to jump from a "predictable treatment" to an unknown. It's me that doesn't want to do Clinical Trials. It's me that puts the halt on new meds. I HATE NEW SIDE EFFECTS AND I HATE THE UNKNOWN. I AM NOT BRAVE ANYMORE. I used to like "challenges", and saw new treatments as me challenging myeloma to an internal duel. Not now, I just want to feel ok.
Ok, Julie be a "patient paitient". Go outside, enjoy this beautiful life in tiny ways. Stop trying to get back to your 30s, and 40s. I always "forget" that my current "age" does factor in to everything now, all the side effects, pain, myeloma growth, injuries, etc. I have to recognize that 11+ + years with Myeloma is a wonderful milestone, but I will never be back to who I used to be... Meanwhile, I'll just keep reading about EXTRAMEDULLARY!
Pain, Pain stay away... meds meds please keep working!