Myeloma is Too Smart and Currently Winning :((

4.30.20

Hello Everyone-

Hoping all is good with all of you during this new new new normal we are all experiencing. The spectrum of affect is so different for everyone, depending where you live, what your living circumstances are, what your work, home and family and life is, what your medical situation is, etc. As I have written before, not a whole lot has changed for me, as I’ve lived quite the isolated immune compromised life for more years than most people could tolerate. Main change for me, is lack of availability of common household products I used to order easily online, and of course the worry of coming in contact of that sneaky stealth coronavirus.

I have a phone consult with my Dr today, and suspect she will again want to discuss changing up my chemos, as Myeloma is again outsmarting our triplet concoction of Dex steroids, Velcade and Cyclophosphamide. As I have mentioned a zillion times, my main concern with changing treatments is my fear of new side effects. I’m just so tired of 10+ years of not feeling well. Just so exhausted from weekly medication crashes. Just so beat up from being sick for so long. Yes, just sick of being sick. I feel so beat up right now, as I’ve been doing too much around around my house and yard with Jim’s situation, and I had a terrible GI crash late Tues, early Wed from Monday’s treatment. Was on the pottie til about 2am, finally showered around 2:30am. When Jim’s caregiver Chris came in the morning, I went back to bed until around 3pm Wed. Still feel so wiped out (no pun intended lol)

I’ll post screenshots of my labs after our phone appointment, but I did see my IGA and Beta2 Microglobulin the other day, and both are way above normal. IGA is over 1740, and Beta2 over 2. Normal for IGA is 70-400, so that puts me at over 4x the high end of normal… been there before, so I’m not in a panic about it, just sad this treatment is now becoming ineffective, but to be expected by now. I’m still very appreciative that it lasted as long as it has, since Sept 2018!

5.1.20 UPDATE

Ok, here are my most recent Lab results:

IGA
Up up and away…
M Protein up up up
Beta2 Microglobulin
Up up up

Sooooooooooo…. after seeing these results…
You can imagine how the conversation with my Dr went with my increasing lab stats. She is very vigilant, and not wanting to let my levels escalate any further…  Me, I would wait to see if they would magically come down next cycle, or wait until my IGA is over 2000. Stupid, yes. Scared, yes. Not wanting this news, yes. We discussed the reality of my situation with the myeloma increasing, the length of time I have had myeloma, the amount and types of chemo and immunotherapy treatments I have already been through for over 10+ years, and what remaining treatment options are available to me. Yes, I must move forward and accept that my current triplet treatment is no long effective.

I’m still processing everything, but my situation really hit me yesterday, and I had a mini meltdown but eventually pulled myself together as I always do. I’m still very sad today. Guess I still live in a hopeful, too optimistic, dream world, that my Myeloma will magically be in control, and I can go forward with my life, and pretend I am ok. I still hope each morning I will wake up, and Jim will be his ol self again, and I will be ok, and we can can back to our pre-illness life. I really don’t want much, I just want to feel good and have functionality. Yes in the BIG PICTURE OF THE WORLD RIGHT NOW, I am very very fortunate, and I know it. I just miss my old life, and I miss all the potential things I had planned on doing in this chapter of my life, had I been well, had we both been well… oh well… forward march Julie…

So THE PLAN…
I accepted my fate reluctantly, while pleading and negotiating no drastic medication changes. Ha Ha! I never want to NOT be on myeloma pummeling meds, no matter what. I know my Myeloma, and know how aggressive it is, and know that left UNtreated…. it escalates FAST! Even in the end… I will do Dex steroids to feel ok. So my Dr recommended we stop my current triplet of Dex steroids, Velcade and Cytoxan and MOVE TO Elotuzumab Empliciti https://www.empliciti.com/ with Pomalyst https://pomalysthcp.com/triplets  and Dex.

She told me a “transition period” is needed to clear the current meds out of my system, which makes sense, and to just take the Dex steroids for the next 2 weeks. But that scares me. Just Dex… there you go myeloma. Free ride to take over… We would then have an in-person appointment, second week of May. I again mentioned how my numbers have rollercoasted over the last 10 years and I wasn’t too too worried about the levels now, and could we just go another month, and see what happens, blah blah, me thinking one month will do something magical, blah blah, ha ha…  Nope, she’s worried about the upward trend, and doesn’t want to wait to see what might happen, and actually, no point in waiting, the trend speaks for itself… Ah, yes… my numbers speak for themselves… Ok, ok, here we go… cccchhhhange…

So we will drop the Velcade starting now. My last dose was this past Monday, and I’m pretty proud I tolerated it to shot #80! Yes, 80 shots of Velcade. 80 weeks of Velcade! Go me. I have had a bit more Neuropathy in my feet lately, so perhaps this is the best decision.

The New Plan:
I will do Dex and Cytoxan (Cyclophosphamide) on Monday May 4th, without the Velcade. This will be my last dose of the 400mg Cytoxan pills. Then the following Monday, May 11th, I will just do the 40mg Dex steroids. Then Tues May 12th, I will meet with my Dr to discuss the new plan of Elotuzumab and Pomalyst, to begin on Monday May 18th.

Not happy myeloma is once again winning, but grateful I have options.
Scared of new side effects, but sadly used to it.
Tired of the whole thing, yes, but I won’t give up yet!

Beautiful sunset view from my backyard the other day :))
Yes, I am still very very fortunate…
Jim’s roses are so beautiful this year!

Thank you for reading and caring about my crazy myeloma story. Stay well, stay away from all the cooties and I hope your life is less complex than mine!