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 LOLPaired 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:
Here's the link for Xpovio Selinexor:
And ironically, on one of the Selinexor links, there's study-trial of how it may fight Covid 19 also!
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!
Crossing fingers, toes and anything else possible, that this combo knocks the crap out of the myeloma! Hang in there, Julie!ReplyDelete
Hi Ellen, so good to hear from you! Yes, I go tomorrow for round #2 and actually my Drs may add in a 4th to the mix. Just got to pummel these nasty cells so I can have my life back! Hoping you and your family are doing well and best wishes for 2021 to be a better year for all of us xoxoDelete
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