Out With 2020, In With 2021 with New Choices and Decisions To Make

 12.30.20

Hello Friends and Loyal Readers-

"HAPPY" (haha!) 11 YEAR MYELOMA DIAGNOSIS ANNIVERSARY TO ME 

TODAY, DECEMBER 30!!!

Can you believe I have been FIGHTING Myeloma for 11 years now? I should be "dead", but so darn grateful, thankful, blessed to still be here. Seriously unreal, and unbelievable, right! 11 years, wow!

On this day, 11 years ago, I was diagnosed with Multiple (WTF) Myeloma. 

11 years ago, December 30, 2009, I was diagnosed with INCURABLE MYELOMA CANCER. 

11 years ago changed my life forever, but on that day, I could not possibly comprehend or understand what was ahead of me. 

I heard the word CANCER and knew what that meant. But I sure did not know ANYTHING about Myeloma, Multiple (Who?) Myeloma. 

Everyone said- "Julie, Don't Google It!", "Don't Get Online and Read!" HA! That's EXACTLY what I did that night, and continue to do almost daily, to keep informed about what Myeloma is, how it's treated, how it mutates, morphs and changes, and how this huge unforgiving train comin my way, directly at me, is ready to run me over and do me in any day...

11 years ago, December 30, 2009, I was diagnosed with Myeloma. Multiple (OMG) Myeloma. I've survived this crazy, incurable cancer roller coaster insanity called Myeloma, for longer than anyone thought I could or would. Myeloma has been trying to KILL ME for 11 years now, but I ain't going down without a huge fight!

UNBELIEVABLE RIGHT!!!

Yesterday 12.29.2020 I had a Dr consultation appointment to plan the next treatment attack. My Kyprolis IV infusion was cancelled because my CBCs, Hemoglobin, Platelets, Red Cells, etc, are too dangerously low for chemo, so I received 2 bags of blood. So many things I thought I would "never do", I do now to stay alive. Thank you so very much to all the Donor Angels out there, saving our lives, One Bag at a Time!

11 years ago I could not even fathom where I am today, but I always thought I would still be alive. Yep, I was super naive and arrogant enough to think I was "different", even though a Myeloma diagnosis is DEADLY, full on deadly. I just couldn't couldn't fully absorb I was Not going to die an old lady, walking her pony down the road, thinking it was a dog or goat :)) Myeloma just wants to eat us up alive. And at this time, there is NO CURE, just chemo options. I seriously didn't question my long term survival at diagnosis. Stupid Yes, as Myeloma is medically TREATABLE, until one's treatment options "run out". But thankfully, all the incredibly BRILLIANT MEDICAL SCIENCE RESEARCHERS and Doctors are always on the hunt for novel TREATMENT combinations for us, always researching new options and a possible "CURE" for this awful, relentless,  morphing, mutating, incredibly SMART cancer. I hate you Myeloma, but from a bio-science perspective, I marvel at what cancer can do to a once healthy body... 

Well, here's my most recent Lab stats, they're not happy news and kinda scary!

Was wishing this blood sample had 

better news... 

Myeloma is smart, and mutates Fast and Furiously

when we become "Refractory" to the treatments we are on.

So on to the next level of treatment...

Better Brave Up Julie!

IGA is my telltale status marker

Yikes! Almost 13x the HIGH end of Normal!

As they say... "Numbers Don't Lie"...

How can the Beta2 increase like this in only several days? 

Well I did reduce the 40mg Dex Steroids to 20mg for a week...

This week I'll do 20mg Mon, 40mg Tues, 20mg Wed, 40mg Thurs. 

Just can't stand how poofy and bloated I am now :((

Ahahhaaaa!!! Me :)) 

Here I am, receiving 2 bags of donor blood-

Never thought I would do that, but I sure 

Thank the Donors for their Kindness and Selflessness!

Everyone in healthcare are amazing soldiers, warriors and life savers!

I always "bring" Jim with me,

have his picture in his car and mine always

and also a pictorial "shrine" to him in the kitchen.

He is always with me, and I feel his presence everywhere

in our house and property

Amazing what cancer patients go thru,

and so Amazing what the body can tolerate!

How can someone eles's blood co-mingle with mine,

and my body is totally ok with it! 

Can we just drain my Myeloma contaminated blood,

and replace it completely with some healthy blood :))

So what did my Dr and I discuss... 

Well a lot, and know she feels bad for me, as she knows Quality of Life is Most Important to me at this time, and she knows I am afraid of new side effects, and she knows I am scared of changing to new chemos, immunotherapies, and she knows I don't want another SCT (even tho I have millions of my own Stemmies for another SCT), and she knows I don't want to do the Car T (as too many I know have had severe complications, and eventually passed away after it seemed so promising)...  At this time, it's Hospice over Hospitalization for everything...

So I had downloaded a copy of all the FDA approved Myeloma meds as talking points, highlighted what I have already tried, had success with, and then eventually became refractory to- 

Here's the list of all the meds I have done since January 2010. Several of these I have done several times in different combinations with each other. Several of these I had somewhat miminal daily side effects LOL, minimal being so relative LOL. Diarrhea, extreme Diarrhea, Nausea, intense bone, muscle, nerve pain. Extreme Fatigue. Fevers. Steroid bloating. Neuropathy, Neutropenea, etc. 

Actually NOTHING about this awful journey has been minimal LOL...  but the WORST for me was Elotuzumab-Emplicity that seemed to grow, encourage, morph and mutate all my tumors, lesions, fractures, masses, etc!, into the "huge" out of the bone marrow, into body cavity, "masses". June, July, August of 2020 was so awful on the daily imobilizing pain and fever scale, (and unfortunately, that was when Jim was declining so fast also, and we put him on home Hospice.) So insane I am living with a Mass in my R side Lung Chest area (tennis ball size), R side skull area, and R side Abdominal (near the Kidney, Liver and Adrenal Gland area), softball size. So unreal to me. 

THE BEEN THERE, DONE THIS LIST:

Dexamethasone Steroids @ 20mg or 40mg, always paired with these-

Revlimid

Cytoxan IV prior to SCT

Melphalan IV with SCT

Revlimid maintenance

Revlimid

Kyprolis

Pomalyst

Velcade

Darzalex

Cytoxan (IV for SCT 2010, pill form for treatment Sept 2019 to May 2020)

Elotuzumab Emplicity

Revlimd

Velcade

Kyprolis

Next up??? Great list here of treatment options...

Had Radiation in 2018, for a week+:

Sacrum tumor, Skull, Ribs, Clavicle, collarbone tumor and several fractures 

Had Radiation in 2020, 2 weeks+:

Have a Lung mass size of a tennis ball, and Abdominal mass even larger, the size of grapefruit or softball, more clavicle and rib radiation- both R and L sides

Became "Extramedulary" in 2020

Add in:

Acyclovir daily to prevent Shingles

Omeprazole for Steroid stomach issues

Benadryl to prevent reactions and for sleep

Flexeril to help calm and untangel all the nerves and muscles caught in all the tumors, fractures and masses

Vitimins- B12, D3, C, Magnesium, Women's Alive, Tylenol, Opioids (that I don't use as they don't do much for me, so why use those and damage my body more!

.81 Aspirin, depending on the treatment and chance of DVT

And more I am probably forgetting

So what am I going to do, going forward... 

Everyone always asks if I seek out 2nd, 3rd opinions. I don't feel I need to, as I have a wonderful Dr who consults with the whole Kaiser Onocology Team, and is very aware of how I feel about how I want to treat this awfulness. And she consults with current research, studies, and clinical trials, and follows that VERY EXACTLY. She brings up the reports, trials, treatment options, when we meet. And Kaiser is paired with City of Hope, so I have access to any medication, treatment, drug, clinical trial, etc, I want. Again, I am the one putting the brakes on many suggestions, because I AM NOT BRAVE WHEN IT COMES TO YUCKY SIDE EFFECTS! But I did schedule an appointment for January, with the Kaiser City of Hope Myeloma Specialist Dr Sahebi, My local Dr will also consult with her, re my next chess move. They all work as Team and consult with each other all the time for case management and planning. What better is that? And again, I have access to ANY MEDICATION, CHEMO, IMMUNOTHERAPY, TREATMENT PLAN COMBINATION I WANT, Kaiser has never refused me anything, ever, and has always leaned towards a more "agressive" , "progressive" treatment perspective than me!

We discussed combinations of these, some I have done before, others new to me:

Thalidomide (very old school, and one of the 1st Myeloma treatments)

Cytoxan pills

Kyprolis IV

Ninlaro - Ixazomib pills

Sarclisa- Isatuximab

Darzalex

Xpovio- Selinexor

Blenrep- Belantamab

You can see all these on the IMF frontline treatments, FDA approved medications

And on the MMRF site for treatments

I never was a big "risk taker", and certainly am NOT now. I used to be much more "brave"  and took all this more lightly than now. But as I stare death in the face, with one foot in the grave, and know my High Risk IGA has morphed and mutated, I am more aware and scared than before, and KNOW I must make decisions I don't want to. And those decisions are:

1- I can deal with Lower GI side effects, but not Upper GI side effects and I know several of the newer meds are puking meds...

2- At this time, I do not want to be Hospitalized for the super duper 24 7 high dose, 4 or 5 chemos/immunotherapies at a time, as with stupid Covid, my family and friends cannot visit me. Face Time, etc is not my thing and when I feel Gross, I wouldn't have energy for that. I told my Dr it's Hospice over Hospital. She understands but would still like to be more "aggressive" than me.

3- At this time, I do not want to be Hospitalized for another Stem Cell Transplant, even tho I have millions of MY cells for it and it would be at the wonderful City of Hope. Maybe later on after Covid is reined in, if ever...

4- At this time, I do not want to be Hospitalized for the CAR T transplant, as sorry everyone, I "know" and "know of" too many Myeloma warriors that seemed to be ok at first, then tragically passed away, after thinking CAR T magically "healed and cured" them. And they were in reputable hospital clinical trails at City of Hope, and all over the USA at Myeloma Specialty hospitals..

5- I will wait to see what my Dr says after consulting with the Myeloma specialist at City of Hope

6- I will consult with her too at my January 2021 appointment

7- At this time, I am ok with bumping up to a 3 or 4 medication combination that is both pill form and clinic IV, but with stupid Covid, maybe all pill form, but ugh, my poor tummy!!!

8- I hate pain, I am NOT Brave anymore, I want to feel good, I want to be able to live life while in treatment. I just want to do all the "little things" around here Jim and I worked so hard for all our lives. I'm not even asking to go horseback riding any more. But maybe one day I can groom some manes and tails? I am Sick and Tired of being Sick and Tired. I'm so over not feeling well. I cannot stand the constant FATIGUE when not on steroids. Yes, I live in La La Land :))

Here's all my posts from the time I've reflected back on this incredible 11 year journey. Can you believe I've been writing this blog for 11 years now! I need to make this into a book in case Google crashes! Ugh, scary, don't want to jinx it... 

2019

https://juliesmyelomamoments.blogspot.com/2019/12/i-made-it-10-years-ago-today-i-was.html

2018
https://juliesmyelomamoments.blogspot.com/2018/12/9-years-ago-today-i-learned-myeloma.html

2017 

https://juliesmyelomamoments.blogspot.com/2017/12/happy-new-year-you-have-myeloma.html

2016

https://juliesmyelomamoments.blogspot.com/2016/12/7-year-myeloma-diagnosis-anniversary.html 

2015
https://juliesmyelomamoments.blogspot.com/2015/12/6-years-ago-today-and-im-still-here-to.html

2014
https://juliesmyelomamoments.blogspot.com/2014/12/5-years-ago-today-boom-mm-forever.html

2013
https://juliesmyelomamoments.blogspot.com/2013/12/

2012
https://juliesmyelomamoments.blogspot.com/2012/12/

2011
https://juliesmyelomamoments.blogspot.com/2011/12/

2010
https://juliesmyelomamoments.blogspot.com/2010/12/

And soooooooooo, the crazy journey continues. I'm amazed, stunned, shocked, increduous, but ready to begin 2021 With a New Stronger Treatment Plan that will Pummel Myeloma's celluar butt! If you have successfully done a treatment I have not, Please Share the Combination with Me! If you have a recommendation of a particular IV, Pill-form chemo, immunotherapy, please Share with Me! I am open to all ideas EXCEPT something that involves HOSPITALIZATION. What my husband Jim went through with the home health care Hospice, was "wonderful" and peaceful, and taught me and my adult kids a lot. Hospitalization right now with stupid Covid, is very very crazy and complex and if "something went wrong", I would pass without my family there... So I'm stickin to out patient chemo and immunotherapy pills and chemo-clinic IV at this time. 

Hospice over Hospitalization is my new mantra :))

Thank you for checking in, reading and commenting about my life story. Means so very much to me! Hoping you and your family are well, happy and ready to get the heck out of 2020 and get to a better 2021! Best Wishes for health, happiness and positive things for all of us in 2021!

Pity Party Time

 12.20.20

Hello Friends-

I'm so beat up. The 40mg Dex Steroids, 4days on, are really taking their toll on me. They're great the first few days, then with all the sleepless nights, then the totally yucky crash for a few days, I'm rethinking my insistance on doing this. And I also can't stand how bloated I feel and how puffy I look. And I just can't stand all the Fatigue. I feel so limited and disabled. I'll take my Myeloma status labs middle of the week, and we'll see what's really going on with Myeloma trying to win. Perhaps I will downsize to 20mg per day? Ugh I am just so over all this. I hate you Myeloma and what you have done to my life...

It's a beautiful day out today, and I just can't drag my sorry self out there... but I will, because I have to, because it's just so beautiful out. As I write this, I look out our big kitchen window and see my horses soaking up the December sun, swishing their tails at the few remaining flies of 2020, Jim's roses and flowers still bloom brightly, the doggies run around chasing flying things and each other, and the breeze blowing thru the oak trees and our patio, wakes up Jim's collection melodic wind chimes. I just have so much to be grateful for, but honestly, I'm so weak and tired, I have residual pain points that remind all the time of my situation, and my helium, my get up and go, is just stolen. I'm grateful, but so sad.

During my awake hours I try to get things done. I feel like I have a huge boat anchor ball and chain attached to every part of me. The Fatigue is just disabling. I have a headache today. Hope that doesn't mean something. Perhaps I'm a bit dehydrated, as I'm so very tired of hydrating. Nothing really tastes good, and I find myself snacking more than I used to, just to get the metallic taste out of my mouth. Doesn't do much good tho. Some days I eat "well", some days I just don't "care". My Not eating well would be most people's "good" days, as I'm not a junk food eater, but I certainly don't get every nutrient on the food pyrimid everyday. I care, don't care, anymore. I often wonder if I am feeding, nourishing, powering my immune system, or if I'm actually empowering the myeloma cells trying to kill me. When I eat well, take the vitimins I do (B12, D3, Multi, etc), I wonder if the myeloma cells are laughing and gobbling it all up and gaining strength against me. It's just so weird to live with your body sabotaging you, and trying to kill you, every second of every day, 24 7.

Honestly I just can't wrap my head around all that has happened to me. In many ways, I so carefully planned my life, was super cautious with most everything I did, I didn't take a lot of "risks", and then I am rewarded with terminal, incurable cancer. Where the F did Myeloma come from? How did it find me? I'm always asking WHY, How Come, Why Me, Why the Torture, What Did I Do To Deserve This? I just want Peace, Serenity, Calm, Happiness, No Challenges any more, No Pain. I want to Laugh and have Fun. I want to have Energy to help myself and others. I was a helper all my life. I gave and gave and gave. I did little specifically for me. Why Life, Why, Did This Happen To Me... I know,... I'll probably Never Know the Why... 

So I carry on. One labored step at a time. Sad, Angry, yet Grateful. Shocked and Amazed. Always wondering, always shaking my head that This Can't Be. This Cannot Be My Life. 11 years Fighting is a long time. 11 years taking super strong chemo meds is a long time. 11 years in continual treatment is a long time. 11 years processing having cancer and being sick, is a long time. 11 years being sick. Grateful for 11 years, But it's become so Awful, yet I am very Fortunate in so many ways. 

=======

Well look at these lovely test results that just came in. From the time I started this post, I did go outside as my kids and their significant others came over to help with chores. Was super nice to be outside, and feel a bit of normalcy with them. When they left, I did too, and went to take my Monday pre-chemo status labs... I probably should not be driving as I am so weak and dizzy, but I am very careful. They always offer to drive me, but the Independent spirit in me, insists I'm ok... 

So whatcha think my Dr will decide re doing Kyprolis and continuing Dex, after seeing these wonderful levels:

Oh Boy...

Not Good...

And that Platelet level

Oh Boy...

And my ANC is super Low too... Neutropenic Low at-

NEUTROPHILS, ABSOLUTE COUNT (ANC)

Me = 0.85 x1000/mcL   (1.80 - 7.70 x1000/mcL (normal range)

Ok, I'm done for today. So sad, so disheartened. I feel I am fighting so hard to be ok, and I am only getting worse. Is it Kyprolis not effective any more? The high dose steroids backfiring? Is Myeloma just too powerful for my weak body? Will I be able to receive treatment tomorrow? Did you see the note about the "critical WBC result". The on-call Dr called me around 10pm last night...  wow, WBC of 1.0... Stay away cooties, as I'm super immune compromised... ugh... 

========

Thanks for reading and caring everyone, and if I don't post again before the holidays, I hope you have a happy time with your families, whatever you are able to do, in these crazy crazy times. I'll post when I receive my Myeloma status labs, and also after my end of the month, last Dr appt of the year, Dec 29... Thank you for caring and commenting as you do, your virtual friendships mean a lot to me :))

LOL LOL 

11 Years Ago Today I Learned More NEW Vocabulary Words

 12.14.20

11 years ago today, December 14, 2009, was my very first Hematology, Oncology appointment. Little did I know the massive train barreling down the tracks full speed ahead towards me, would completely smash my life as I once knew it! I really thought I was just "anemic" from all the "bleeding out" I had been doing in 2008, 2009, and that I was just exhausted from working and playing so much, etc. I joked with my new Dr that I would just drink more Cranberry Juice to make "better blood" and eat more steak lol, to add in more Iron. I just couldn't fathom there was really something seriously wrong with me, as there were never any "serious" health problems in my family (except Alzheimers with my Mother at the time). Jim was shocked, speechless and teary. He just couldn't comprehend it all either. I don't think he ever fully digested what Myeloma was, and how sick really I was. I don't think many do. My outside belies the inside...

I wasn't actually diagnosed with Myeloma at this Dec 14, 2009 appt, but there was a lot of discussion about my horrible blood tests, concerns of high levels of all kinds of things in my blood tests I did not understand, nor ever heard of, and serious worries and corncerns of my super low compromised immune system. I really couldn't absorb or comprehend most of what My Dr was saying. She had me do more and more labs that day, more a few days later and weekly going forward, mentioning possibly needing blood transfusions and possible hospitalization. What? I can't possibly be that "sick". I was scheduled for a Bone Marrow Biopsy for Dec 18. A what? I surely didn't "need" something so serious and painful like that. They must have mixed up my labs with someone else! And yes Google became my best friend, even though everyone warned against that. 

All these slides represented me, but I didn't know it yet...

So here I am, 11 Years, yes 11 Years later, still alive, still battling, still fighting, still shocked, still doing NON STOP treatments. I'm pretty amazed about it all, but so very very grateful to still be here to live, fight, write, and most importantly, enjoy little moments with all those I love and care about. I'm pretty lucky right? 11 years and counting!!!

Rather than rewrite all my annual thoughts and feelings for 11 years, here are all my past December 14th posts! Thank you for reading and caring about my story as you do! 

May you be healthy and happy, and any battle you are battling, calms down, and lets you live a fulfilling and postive life. And let's hope this stupid Virus gets slapped down, and we can all get back to some semblance of normalcy, and adjust to a "new normal" where we are smarter, cleaner, safer, and healthier, but not having to live in fear all the time of getting sick from a "novel" scary virus that could do us immune compromised, with pre existing conditions, in!

https://juliesmyelomamoments.blogspot.com/2010/12/im-alive-one-year-today-i-was-diagnosed.html

https://juliesmyelomamoments.blogspot.com/2011/12/2-years-ago-today-my-life-as-i-knew-it.html

https://juliesmyelomamoments.blogspot.com/2012/12/12-12-12-just-had-to-do-post-on-12-12.html

https://juliesmyelomamoments.blogspot.com/2013/12/current-stats-just-go-away-myeloma.html

https://juliesmyelomamoments.blogspot.com/2014/12/numbers-numbers-numbers-my-life-in.html

https://juliesmyelomamoments.blogspot.com/2015/12/this-day-2009-vs-this-day-2015.html

https://juliesmyelomamoments.blogspot.com/2016/12/and-drama-continues.html

https://juliesmyelomamoments.blogspot.com/2017/12/today-8-years-ago-december-14-when-it.html

https://juliesmyelomamoments.blogspot.com/2018/12/9-years-ago-today-hema-what-oncol-what.html

https://juliesmyelomamoments.blogspot.com/2019/12/december-14-2009-and-so-it-begins.html

One Day at a Time, Just Trying to Pummel you Myeloma!

 12.10.20

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!

Look at me back in 1980, just a kid!

Loved Mr SkyeHorse!

He was a tall Polish Arabian. 

Jim and others always wanted to trade their horses for him.

Nope, Never!

He was so loyal to me, and such a wonderful pal.

 He was the reason Jim and met.

Oh our lives, what a story it is...

Treatment Options, New Myeloma Vocabulary Word = Extramedullary What? Extramedullary Who?

 12.2.20

Hello Friends and Myeloma Warriors. Cheers to all of us making it to December 2020!

I am so beat up.... Day 3 of 40mg Dex Steroids, plus Kyprolis IV Mon and Tues, and last night 2 of my little doggies woke me up around 3am to go outside, so I didn't get much sleep. Yes the Roids are taking their toll on my sleep, but I truly think this High Dose is doing some hard core good. My Dr is not happy with my perspective, as she is more "aggressive" with wanting to do (multiple) "current treatments" more than me. Most of you would probably side with her, but honestly, at this point, surviving 11 years with this Monster, I only want to feel good as many days as I can, and obvi if I do new treatments I will have new side effects, blah blah blah. I used to be ok and even look forward to what new Immunotherapies would do to my Myeloma, but not now, not after what stikn Elotuzumab did to me in the summer!

But as my Chemo Pharmacist said... "Numbers Don't Lie"... and the high dose Dex steroids and Kryprolis is doing something good, as you saw on my last post! And what's that other quote, "if it ain't broke, don't fix it" right. Meaning if this is working, why change it up... 

But my Dr is worried about the high dose, long-term affects of Dex Steroids on my bones, A1c, and body in general. But again, at this point in my battle, I say "who cares"... well not totally, as I do want more time, but heck, if I can feel good, be home, and pummel Myeloma at the same time, I'm on board. 

So she also is very worried about the migration of my Myeloma from my Inside my bones to Outside, as my Scans have shown. I have since (this year) Radiated the head-skull-sinus mass, lung mass, clavicle/collarbone and rib fractures, and now we have to deal with the biggy- The Abdominal Mass. Maybe we can Radiate that annoyance too. Ugh... dang you Myeloma, stop trying to killllll me. So over being a sickie. 

I learned a new Vocab word, or perhaps it was mentioned previously, and I just had so much else consuming my overworked brain, that I didn't really absorb it. My Dr and the scan and biopsy reports now term and reference my Myeloma as.... EXTRAMEDULLARY. Ugh, thanks Myeloma, more research, reading, understanding and deciding what to do... I just want to Swiffer, do laundry, chores, be outside in the sun and pet my horses and other critters, lol... but I am sooooo fatigued and exhausted... I do so little, even when pushing myself so much... And then I wind up fracturing something, pulling muscles, twisting nerves, etc. I hate pain, I hate challenges now. I just want simplicity and all the "feel goods". Cmon Myeloma, grant me a wish or 2 for a change!

From Google:

"Extramedullary multiple myeloma (EMM) is an aggressive subentity of multiple myeloma, characterized by the ability of a subclone to thrive and grow independent of the bone marrow microenvironment, resulting in a high-risk state associated with increased proliferation, evasion of apoptosis and treatment resistance."

Lovely, thank you Myeloma...

Here's the "good news" screenshots again from my previous post:

IGA down 900 points!

Beta 2 way down!

Next up M Protein

Here's my raw numbers:

Current (Nov 25)     = 3.79

Last month (Oct 25)  = 4.50 

Normal = Zero lol

Ok Friends and Myeloma Warriors, what would you do in my case?

Stop the High Dose Roids? Get on a super powerful, multi dose chemo regimen? Which ones? Head for the Hospital for the Holidays, LOL? Stay the current course? My Dr did mention adding in the Original OLD Myeloma treatment of Thalomid-Thalidomide. Remember that one, from waaaay back when? Haven't done that one yet or any of the new ones listed here: 

https://www.myeloma.org/multiple-myeloma-drugs

https://themmrf.org/multiple-myeloma/treatment-options/standard-treatments/

https://www.myelomacrowd.org/

https://www.cancer.org/cancer/multiple-myeloma/treating/chemotherapy.html

https://www.lls.org/disease-information/myeloma/treatment

https://www.cancer.org/cancer/multiple-myeloma/treating.html

https://www.cancer.net/cancer-types/multiple-myeloma/types-treatment

https://cancer.uams.edu/myeloma/myeloma-related-diseases/information-on-extramedullary-disease/

Can I please just get out of this. Can it all just magically go away, as I used to think it would. Can I please just do a treatment that kills Myeloma and doesn't steal what remains of my life? Not denial, just want to feel good, kill Myeloma, and go on with life... I think I'll make myself some eggs and cinnamon french toast right now :))