Chemo, Radiation, Labs, Radiation, Myeloma Raging

1.28.21

So much going on...

Dr appts under the influence of  high dose Steroids and 50mg IV Benadryl. So funny. My mouth and brain are outside my body talking, and I make little sense. I have to learn to just chill, sleep and let the conversations go... Love the extremities of the meds. Never did drugs, alcohol before, so all this is a fun, crazy ride for me. If only I wasn't being killed inside by Myeloma.... Thank goodness I tolerate so much, so well. Don't know why, but I do. Maybe because all my organs were in good shape when I was Dx Dec 2009? Except why are my Platelets now crashing. They cooperated for years? Is it because Myeloma has munched all it can inside my Bone Marrow, and things just don't do what they're suppose to do now? Will have to read up on that. Dr wants to do a Bone Marrow Biopsy soon. I vigorously shook my head NO, not now!!!... just too much to handle. I haven't even had the time to appropriately mourn my dear Jim, even tho I talk to him in house all the time. So much of my life right now, is JUST ONE FOOT IN FRONT OF THE OTHER, TRYING NOT TO FEEL, NOT THINK, NOT PROCESS... JUST DO WHAT WILL SAVE MY LIFE... 

So I'm on Darzalex IV, Velcade shots, Pomalyst pills, Steroids, and now, Zarxio Neupogen for 5 days, Acyclovir, Vitamins, antacids, tums, Zofran for the Abdominal Alien Radiation for 5 days, more if necessary...  and more things I'm not remembering now, LOL... Would love to have coffee for my early drives to Radiation, but terrified of GI issues on the Freeways. How do "normal people" communte long distances, without a pottie in the car. Well I have to remember I AM NOT NORMAL ANYMORE, AND MY SYSTEM TOTALLY CHANGED WITH THE STEM CELL TRANSPLANT AND ALL THE CHEMO MEDS FOR 11 YEARS. So when "biology" needs to happen... oh boy, I better be near my bathroom or another CLEAN ONE. I just hate gross public bathrooms, and if I pulled off the freeway, I'd never make to the bathroom in a restaurant or hotel, or wherever. I do have "funny stories" from back in the day of early treatments, winding up in a Porta Pottie, etc.. I'm bringing a little trash can in my car the next few days LOL. 

I woke up around 3:30am in anticiaption of my crazy day and days ahead,,,, then decided at 4am to just  wake up, take the Steroids, but then I couldn't get back to sleep (set my alarm for 6am) to begin the "cleanse" process before I get on the freeway. HOW DO ALL MY MYELOMA PATIENT FRIENDS DO THIS? OR DO YOU NOT HAVE HAVE "LOWER GI" ISSUES LIKE I DO???  Monday my Radiation appt is at 8am... might as well never go to sleep, or I'll just be even more "Anorexic" than I currently am, so I don't have to worry about Freeway Biology Drama!!!!. It's a losing battle for me. If I eat, then GI drama. If I don't eat, Myeloma wins. 

Here's some screen shots for you, and then off to the Freeways for Radition this morning and then Blood Transfusion later... Cancer, at least for me, is a Full Time Job... If only I could get back to who I was with out all the complications of Tumors, Masses, Extramedullary, etc. How about "just chemo" you smart, mutating, angry, take over my body and life Myeloma? How about giving me just a little a break so I do little things around here with the Critters, the House, my Family and Friends? How about giving me my belly back Myeloma, so I can eat and not feel 6 months preggo. Oh, just shut up Julie, you're being eaten alive by Myeloma, and Myeloma's just laughing at it's success in this Host....  

IGA

And so, I make another day! I used to think of all this as a "challenge" and I'm gonna beat Myeloma. Now, I'm tired. I'm exhausted. I'm beat up. I'm not brave anymore, altho everyone I meet is amazed I've lasted 11 years with Myeloma, Drs, Nurses, Patients, etc... I just want a bit of my life back. No pain, No Masses, No Fractures, No drama... Myeloma, you are very very smart, and I underestimated you...

Thanks for reading and caring as you do... more to come... So many "adventures" in Julie's Myelomaland... 

Something Amazing Happened Today :))

 1.21.21

Thank you Zarxio/Neupogen and of course 3 days of Dex Steroids... something Totally Amazing Happened Today 1.21.21 :))

Have CT scan tomorrow, Friday 1.22.21, then phone-video appt with Radiology Oncologist on Monday 1.25.21 to plan Radiation Annihilation of my Abdominal "Alien" Mass, then Chemo and Dr appt Tues 1.26.21... so I will have a lot to share next week!!!

But until I do all that, here's a hint of the Amazing 1.21.21 story I made it to!!

Beautiful day, beautiful couple. Thank you Universe for giving me life, energy, and medication to be able to do this :)) 

The Body Sabotage Continues Non Stop, Go Away Myeloma

 1.11.21

Hello Friends and Loyal Followers. 

Here we go with posting on the 1's as I enter my 11th yes, Eleventh Year of Myeloma survival.

I have to make this short, as I have reacurring bloody nose episodes and don't want to bleed out on my computer. I had written some deep thoughts yesterday to post, but never finished it and don't have energy to finish it now. Maybe I will later... 

I'll add screenshots of my results as they come in, so be sure to check back :)) as well as updating you on my new 2021 treatment plans. 

So quickly, here are the Lab results that have come in for my appt with the Myeloma Specialist on Tuesday (tomorrow). I was surprised how high (as in "bad" high) they were. Haven't had results as high as this, on these particular tests:

Beta2

WOW... 10.8 for Beta2?

Wonder if that's a world record yet?

Total Protein

And 12 for Total Protein, 

Never had anything like that before 

and actually never paid much attention to this value

as it was always in the "normal" range. 

                                                          IGA

OMG up up and away we go :((

Never been this High before...

M Protein below

Yikes!

It's never been this High :((

I'm so sad Myeloma is so intent on doing me in. I have so much life I want to live... we'll see how the new combo of Ninlaro, Darzalez, Dex does. Last week was my first with these 3.  Have had Darza previously with great success, and Ninlaro is in the Velcade family, and I did great with Velcade for quite some time too... and Dex steroids. Well I'm ditching the High Dose 40mg for 4 days on, as it's bloated me up along with my Extramedullary Abdominal tumor mass Alien. I look preggo, my belly is so bloated with my Alien. Helllllo Nooooo to that continuing! I barely eat now, as I can't stand the bloated, full feeling. The idea of food still appeals to me, and I do eat tiny bits at a time, but all the fun things I prepared before, ugh, just can't eat now without feeling like a preggo BroodMare. 

I have frequent bloody nose episodes. Like blood pouring out like a faucet. Today I thought I had plugged it up, took the tissue out of my R side nose, and SPLAT, lovely red myeloma blood all over the floor. This is due to the lack of Platelets now. I didn't post those results, but my CBC's are not happy, to say the least... Never had such bad labs :((

Time to build up those lovely Platelets and supportive blood.

Myeloma, you're just too smart and know just how to sabotage me.

So when my IGA and M Protein status comes in, I will screenshot that for you.

I expect some crazy outrageous number, that I will probably then submit to Guiness Book of World Records. Yep, and there they are above, super High :((

And please don't be offended,...... but I spoke at length with the Medical Social Worker the other day, and want to get the process going for ELO (End of Life Options). I am in no rush, seriously, NO Rush, just want to have OPTIONS, in case I don't have any more options, in case my situation becomes so dire, so unbarable I cannot breathe, move, function, or I can't care of my personal needs, I develop more and new painful fractures all over, or I'm paralyzed from fracture/bone breaks, the tumors have invaded everywhere, I can't eat and enjoy, the pain is overwhelming, and there is absolutely No Hope, Zero Hope, for anything helping me or healing me, and all I can do is lay in a Hospital Bed and "wait" for the end to come... Remember, I went thru all of the drawn out, lingering End of Life experiences with my dear husband Jim, when Alzheimer's completely stole his life. As an Alz, Dementia patient you don't have any options (legally and psychologically). The end is just suffer, suffer, suffer... and for the family to wait, wait, wait, watch, watch, watch, along with Hospice assistance... I would of course make this decision with my Adult children, not all by myself...

If you have NetFlix, there was an episode in "Grace and Frankie", about the ladies's friend who chose this option. She threw a great party, then privately passed. How ironic that I am watching this series, and this episode is there. She had "no more options", so this was her choice of how she wanted to exit the earth. And I emphasize, I would only choose this route, IF THERE WERE NO MORE OPTIONS, AND I'M ONLY SUFFERING BEYOND SUFFERING... I would NOT do this option if my kids did not agree.

And yes, I have decided to do Clinical Trials after I have gone thru all the FDA approved Myeloma treatments. I will do the Phase that has the most options and the researchers know the side effects. Because honestly, as I have mentioned a zillion times, I will not spend my last weeks, days with my head in the toilet... 

I will continue this post as more results or chemo changes come in. So please continue to check back. 

UPDATE- 1.13.21

Chemo regimen change - 

Bye bye Ninlaro pills 

Hello Velcade shots again

Hello again to IV Darzalex

Hello again to Pomalyst pills

And of course Dex Steroid pills

Will do 5 days of Zarxio-Neupogen to raise low WBC

Will do a bag of Platelets, and 

2 bags of Blood

Huge shout out to all the Blood Donors out their saving all our lifes!! Thank you for being so UNselfish 

Thank you for reading and caring as you do. 

You help make my life feel valuable :)) 

Hello to Posting on the 1's - And The New Treatment Plan Revealed!

1.1.2021     January 1, 2021     1.1.21                                                        

Happy Happy 2021 Friends and Loyal Followers! It's Good Bye and Good Riddance to drama filled 2020!

It hit me this morning that with my 11 years of Myeloma Survival, it's time to roll from posts on the 0's representing my 10 years of survival, to now represent my 11 years of survival with posts on the 1's! Yes I've become quite the symbolic numbers girl, and it's fun for me to notate my life in symbolic numbers! Sorry if this confusing to you, but if you've been following my blog for a while, then you get it :))

So for 2021, I'll be posting my crazy life updates on the 1's, 11's, 21's and 31's. Ironically today, is the 1st day of 2021, so here I am, posting my first 11th year of survival post of 2021, and I actually have treatment update news for you! 

After all the medication and fear options I wrote about in my last 2010 post, my Dr called me late in the day yesterday, New Year's Eve 2020, to discuss what my next plan of action will be, starting next week! I had sent her an email with all kinds of chemo combo options, and she was so kind to call me before the office closed for the NYE holiday. Yes, I am now "looking forward" to getting started on a new chemo/immunotherapy option fast, to get this dang Myeloma, and it's tumors, masses, fractures, etc, under control. I've done a lot, and I mean a lot, of thinking, forced myself to brave up, and put my fears aside now. I've have had to psychologically process so much in these last several months of 2020, it's like a movie script. So now it's time to get going on pummeling Myeloma in 2021!

We discussed all the options and combos of treatments that I have done previously, and all the possible options I have not done yet. We also know I need to be on a combination of multiple meds, that target Myeloma from several angles. So here's to hoping I don't have a HORRIBLE REACTION to the New chemos, immunotherapipies, like I did with killer Elotuzumab-Emplicity. 

And the plan is.... Xpovio/Selinexor...

 Nope that was changed as of 1.4.21  LOL

Paired with our fave Dex Steroids, possibly paired with Darzalex, and or Ninlaro, and or Pomalyst, and or all of them together LOL! Xpovio-Selinexor was one of the meds I was wanting to avoid lol, as it causes Upper GI reactions :(( but I have to accept yucky side effects to kill off Myeloma, before it kills me, right. So I've braved up, and I'll start taking this 3 or 4 drug regimen beginning next week. 

 

Pomalyst, been there, done that before, caused very low CBCs

but has good success previously

Nope, that was changed on 1.4.21

Darzalez... Yes!! Began 1.5.21

Been there, done that, and with good success

until the study protocols recommended going from weekly to 

every 2 weeks, then to monthly. My stikn "high risk"Myeloma requires

continual treatment, no matter the recommendation of the clinical trials.

New to me, and in the Velcade class of meds

Yes, this was prescribed to me along with the Darzalex! 

Will take 1st pill after Darza infusion 1.6.21

Read too many possible side effects of Nausea vomiting

so I don't want to do that after my first Darza infusion 1.5.21

and possibly not make Day 2 on 1.6.21

So we will see which 3 or 4 combo of IV infusions and pills my Dr and the Myeloma Specialist from the SCT BMT Kaiser COH Dept recommends.

Here's the link to all the FDA approved Myeloma drugs we discussed:

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

Here's the link for Xpovio Selinexor:

https://www.myeloma.org/xpovio-selinexor 

And ironically, on one of the Selinexor links, there's study-trial of how it may fight Covid 19 also!

https://nortonhealthcare.com/news/selinexor-covid-19-trial/

I asked her to start me on a lower dose to begin with, so I'm not living in the bathroom 24 7, but we talked about so much, I'm not sure what dose I will be doing with which. When I found the pictures above, I didn't realize there were so many dose options for each medication, so I will contact her and find out what RX she is planning for me. 

Any of you out there that have done the combo of of any of these? If you have, please let me know how it went for you. We will also plan for anti nausea meds too, for sure. I do always keep melt-away Zofran pills in my stockpile, but rarely ever need them. So we'll see what this 3 or 4 combo brings me. The side effects from all are pretty intense, but I've done a multiple drug combo many times before. I just hope to build my Platelets, Hemoglobin, Reds, Whites, etc, back up, so I don't feel so completely Fatigued and physically beat up and worthless all the time. I have had periodic nose bleeds in the last few months, but not as intense as I did before diagnosis in 2009. 

I've also have more pain, pressure and breathing problems in my R side Chest, Lung area, and Abdominal areas. I feel so bloated and full all the time. Guess these masses are taking up a lot of real estate in my body cavity now. Ugh, the Lung Mass feels like something is putting pressure on it, or a rib is puncturing it. Dang, I just can't catch a "break".  LOL Julie, maybe something there did "break"??  And I feel a pain where the Abdominal Mass is, above the Kidney, Liver, Adrenal is. It's a weird "fullness" I've not felt before. Darn it, when I start to feel relief in one area, I get sabotaged by another. I just don't understand all this suffering the Universe and my body is challenging me with :((

Soooooo, Cheers to a better year for all of us, and let's hope the world can move forward to a better situation than 2020 was! Germs, cooties, viruses, bacteria, cancer, illness, etc, is such a powerful and smart saboteur in our lives... 

I may post sooner than the next symbolic 1... as I'm sure I'll have plenty of news to share this month! But for sure, I'll be back on the 11th, 21st, and 31st :)) Thank you for checking in and caring about my journey. Be well, stay well, and most importantly, LIVE YOUR LIFE HAPPILY and GRATEFULLY EVERY DAY!