How the days fly by! So much has happened since my last posts, regarding my mental and physical status on treatment. I almost don’t remember all the details. But I’ll try to keep this update short and sweet and to the important points.
After mulling over all my options, reading and reading, consulting and consulting, I decided to go with the Velcade shots… and the Pomalyst 4mg pills… paired with the Dex 40mg steroids. If this delightful cocktail doesn’t scare Myeloma off, then Darzalex, here I come, probably along with some of those?
I read a lot online. A lot! Just my academic, inquisitive, counselor, information hungry personality. I read myeloma group posts, research studies, clinical information, pharma information, medical treatment center sites, other patient blogs, myeloma websites like the MMRF, IMF, Myeloma Crowd, Myeloma Beacon, Patient Power, etc. I read read read about myeloma ad nauseam, treatment options, side effects, etc. I realize my status isn’t terrific, and my current stats are “scary”, but I also realize I am very fortunate. Fortunate not have bone involvement and fortunate still to have decent organ function to handle a variety of treatment options. 7 years has taken it’s toll, but it hasn’t “taken” me.
With decision made, and new confidence to move forward, off to the chemo lab I went last Thursday, January 19 for my Dr appointment and first Velcade injection. After reviewing my blood stats, my Dr and I felt ok going ahead with the Velcade, Pomalyst, Dex “cocktail”, (in spite of some low CBCs). She wanted start the Vel and Pom at the same time though. Velcade shot, right after my appointment, then Pom pills that night. But it would take a day or two to receive the Pomalyst, so she postponed the first Velcade shot one day. Oh well, go the flow Julie. Nothing is predictable about cancer and cancer treatments! Pom was ordered stat, to be received Friday or Saturday. So much for gearing up mentally for my first Velcade shot, only to be sent home to return the next day. See, once I make a decision to do something, I want to turbo charge ahead. No more waiting, wondering and stressing about all the “what if’s”. But whatever,…seriously not a big deal at this point. Decisions made. One day postponement, so not a big deal. We ordered the Pomalyst to be Fed Ex’d overnight and I was to return on the next day, Friday Jan 20 for the first Velcade shot.
At this point, I’m more than ready to switch treatments. Let’s pummel myeloma, triplet cocktail! Honestly, my status worries me, and I welcome this new treatment, hoping it makes a dent. Done deal. No problem. Let’s do this. So Friday, I returned to the chemo lab for my first Velcade shot. In a crazy way, it was like a “homecoming”, and so great to see all my fave chemo lab nurses, pharmacists, patients and staff. Such wonderful people, saving all our lives!
I opted for the belly-fat shot, as unfortunately, Dex Steroids have really changed my body. I have plenty of belly chub now for successful SubQ shots. Ugh I just hate what steroids have done to me. But I can’t go back to my “healthy anorexic”, low calorie lifestyle now, right. Gotta get all those important food groups in daily, and not obsess over calories. Dex “makes me” want things I never cared much about before, like dark chocolate, salty foods like chips, cheese, etc, and I do more nuts now for protein. All those are rather high in calories, but what the heck, whatever!
The conversation of the day was all about “cocktails”, so Jim thought no better place to stop on the way home then BevMo! I’ve only been in BevMo once before, as I’ve never been a drinker, but now… it’s all looking rather interesting. First on my list: Fireball! Bailey’s and coffee, Malibu Rum, Sambuca, then… that Mint drink I remember from a long time ago… “Grasshopper”!!! … ahahaaa… I’ll have to ask my oncologist’s how “chemo-cocktails” fare with “real cocktails”. About time I grow up and start drinking. I’m running out of time… wink, wink!
Then This Happened: while we were driving and running a few errands beyond BevMo, turns out my Nurse was trying “frantically” to get a hold of me, and tell me NOT to begin the Pomalyst, as my labs from earlier in the day showed my CBCs were too low to add the Pom in with the Velcade. Seriously!!! I’m all geared up for this Dex, Vel, Pom cocktail, and the brakes are abruptly put on, and we skid to a cocktail halt. I was glad though, that I at least had Velcade in my belly, with Dex down the hatch earlier, as I seriously now get concerned when on any treatment break… even for a week.
My Pomalyst 4mg did arrive on Saturday. I picked it up from the local Fed Ex office, tucked it securely in my medicine drawer for later use, shook my head, and tried to process this crazy myeloma ride with “cocktail time” cancelled. At least I was strong enough for a singular chemo option, paired with Dex. Labs in a few days, they said, to update my status. Here’s how my first lovely Velcade shot site looks now:
Status labs this morning. Dex down the hatch. Velcade shot in the afternoon. Pom at night.
I’m tired, fatigued, weak, headaches, bit of Neuropathy, always thirsty and dehydrated and have had a “breathless” issue, mainly after eating. Hmm… I remember that from back in 2009…. will have to mention that to my Dr and Nurses. Most likely due low CBCs. Anemia? Oh myeloma, you are the “gift that Never stops giving”. But still, I have many more positive “gifts” then negative…
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!