This may not sound like much, but it is. My IgA and M-Protein is higher now than mid-initial treatment 2010! Whoa! What?! I’m no where near ok now and haven’t been for a while. I’m worse. And each month I get worse. Myeloma has been slyly creeping back since mid 2013, and I’m in LaLaLand thinking I’m not near as bad as I was in 2009/2010, BECAUSE I was comparing my CURRENT status to my INITIAL diagnosis status.
|My current IgA of 1890 is the highest it’s
been since mid Feb 2010 (before SCT) and Dec 2013 when I was fully out of
And here’s my M-Protein stats, which tells the same story with a different variable:
0.00 - 0.0g/Dl
12/30/09 MYELOMA DIAGNOSIS
JANUARY BEGIN REVLIMID AND DEXAMETHASONE (+ others)
JUNE CYTOXAN IV
JUNE NEUPOGEN INJECTIONS
JULY MELPHALAN IV
JULY 5 AUTOLOGOUS STEM CELL TRANSPLANT
08/18/10 0.00 (ZERO)
AUGUST 2010 = FULL REMISSION! YIPPEE!
2010 - 2012 I remained on Rev chemo for almost 2 years...
2012 - 2013 Break from myeloma meds
Shortly after taking a break from meds, myeloma comes back
OUT OF REMISSION, HERE I COME
Same story. Higher now then early stages of initial treatment, and back in Dec 2013.
As I’ve ranted on previously, I’m not the bravest filly in the herd and I haven’t wanted to deal with new and yuckier side effects. But it’s time now and I know it. So when my Oncologist suggested switching meds, I agreed. Cowgirl up Julie.
We discussed Velcade, and I suggested Kyprolis, as I’ve heard so many awful stories about so many suffering with debilitating Neuropathy from Velcade. So I said let’s skip right past Velcade and go directly to Kyprolis. I’m very fortunate with my insurance that I have choices, and if I can, I pick the most effective treatments, with the least awful side effects. And I have GREAT Doctors, who analyze all my options with me.
So Revlimid, you’ve been a loyal ally, battling Myeloma for me since January 2010, and I thank you for saving my life. For me though, you’ve grown battle-weary and your myeloma killing power and strength has waned. So good-bye Revlimid, hello Kyprolis. I’m scheduled to begin IV infusions on Nov 2. Yes I’m worried about how the new treatment will affect me, but I know what I have to do to suppress Myeloma, before it’s “too late”. Hello chemo lab, scaredy cat is limping in ...
Ok, as promised… a funny story each post:
So 6 YEARS ago this month I had my normal, annual “well check” blood tests. Well that “well check” turned out results that I wasn’t so “well” after all. My GP sounded the alarm via voicemail messages that I needed to come back for additional blood work. Whatcha think I did? Yep, put it off, actually “ignoring” the messages at first (stupid!). Not worried, thinking it’s all a mistake, that the lab technician read my results wrong, or it was just something MINOR amiss. But with Jim’s “nagging” (loving insistence), I went back and did more blood tests. My GP called quite concerned again… and again. And each time, I didn’t respond exactly immediately. You know all those “adult excuses”: too busy, too tired, too much to do, too much going on, too many students to help, too many animals to take care of, too much FUN to have, too much of "this and that" to worry about something that I thought would be “nothing”. Ya, I was DUMB!!! But honestly, I really didn’t think much was up. Call me SMART-STUPID!
So what was all this my GP urgently wanted to discuss with me? Yep, my WBC’s were alarmingly low, high, abnormal, unusual, flagged, etc, and I was VERY ANEMIC! Dangerously anemic. What? No! Not me! So anemic he mentioned the word TRANSFUSION. A trans-what? And I needed Platelets too. Plate of what? I scoffed at all of this, and again, really thought someone was reading my results wrong. But I do remember that I did start to review all my unusual body behavior in those last 2 years, as I did have A LOT of crazy bleeding, and weird side effects I would come to know as "Hypercalcalcemia"!
If you are squeamish about body details and physiology… STOP reading here!! especially men…
Actually the Anemia made sense. A lot of sense, as I had been “bleeding out” for quite some time. And by bleeding out, I'm referring to female plumbing.. and my nose. A lot of nose bleeds!
I thought I was having severe nasal allergies as I would get random nose bleeds all the time. And I mean nose bleed rivers that just wouldn’t stop! Some days I couldn’t even go into work, or anywhere, I was bleeding so much, "north and south". Many times I would be in my office, and think my nose was just doing what noses do, and I’d grab a Kleenex, and boom, BLOOD! Or my students would tell me I was bleeding. Well one day, one appointment I was meeting with a young man and his dad. They were new to the USA, so there was a bit of language difference. So when the young man motioned for me to wipe my nose, I got it. I reached over to my Kleenex box, wiped my nose, and yep, bright red. And whenever this happened, no matter how much pressure I put on my nose arteries, I bled and bled. Can you even picture me still trying to conduct counseling appointments holding Kleenex up to my nose? Yikes, what a piece of work I am. SMART STUPID! Well the story gets worse.
Back then, for about 2 years or so, I thought “mid life” had hit me early as I had crazy erratic female bleeding. (Sorry if TMI (Too Much Information lol). So I only wore black pants back then. Well when this young man and his father and I were done consulting about his upcoming transfer to a prestigious University, they stood up to leave and I did the same to walk them out. Well when I stood up, I HEMORRHAGED! OMG I thought, I can’t move, or I’ll create a mess in my office and beyond! I was so shocked, but didn’t of course want to let on what was happening! I sat back down (ugh, squish), and pretended that I needed to print another document for them. I remained sitting, told them how wonderful it was to meet them and shook their hands good-bye while remaining seated. So awkward! Guess what color chair pad I had… I’m laughing writing this, reflecting on how ridiculous I’ve been in my life… just trying to be NORMAL!
Well, needless to say, I was beginning to accept something must be up. I had lost a lot of blood 2008-2009. But I rationalized it away as nasal allergies and mid-life women’s issues. Stupidly, I thought I could solve it by making a few dietary changes lol. I told my Dr I would eat BEEF for iron and drink more RED juices to replace my blood loss and blood issues. Sheesshh what goofball I was….or does that spell DENIAL? And STUPID.
Yep, I’m a premier member of the SMART STUPID CLUB.
And so... back to now. Honestly, I’m kinda scared about my new journey. But trying to be brave. I’m probably over reacting, and hopefully my side effect fears are unfounded. Have I confessed what I am most scared of? I can handle most anything except throwing up. It’s just so awful to me. I’ve read there’s nausea with Kyprolis… ugh… Yes, I will ask for all kinds of anti-nausea meds, like I did for Cytoxan, and Melphalan and during my Stem Cell Transplant.
Wish me luck, and I’ll report in on Nov 5, if I’m not hugging “Porcelain John” 24/7 …
Happy Halloween Everyone!
|Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!|
Oh my goodness what a story Julie! I just learned a whole bunch about you from this post. The numbers...wow, my brain would be so scrambled analyzing all of that! And...so much of your story shows how we can explain things away when the C words is nowhere in the realm of our wildest imagination! Hindsight is always 20/20 isn't it? I'm just thankful you have agreed to move on to one of the other good drug choices available to you, and hopefully you will be surprised and actually feel fewer side effects than with Rev! I pray Kyprolis works for you, and that you can have more freedom from Porcelain John. Time to go to battle and get those numbers back down again! In the meantime, stay smart, trust in the doctors you have chosen...thel experts who are in your corner fighting. I will be anxiously awaiting your next post after having your first Kyprolis infusion. I don't blame you for being scared but obviously you are a VERY STRONG woman who has made it through ALOT! EZ and I send you our love and prayers!ReplyDelete
Hi Linda! Thank you so much for all your kind words of appreciation and support! Yes, it's a lot of overwhelming #s, but writing it all out here, and posting it as I did, has really helped me wrap my head around my situation. Plus it's a great place to refer back to for me to see my stats all in one place. No, I am not that strong, just doing what I have to do, but thank you for seeing me that way :))Delete
And, it's crazy what happened after all my anticipation...
Ugh... we'll see what this coming Monday brings. Thank you for all your support, and my best to you and EZ! love and hugs!!!! xoxo
I'm praying for you my friend🙏 Just remember how strong and courageous you are just by taking this step. I'm here for you ALWAYS. I will come sit with you during infusions:)ReplyDelete
Love Suzanne Weltig 🌻
One more thing... I MISS YOU TONS!!!!ReplyDelete
Awwww thank you so much sweet Suzanne for checking in and supporting me as you do! I appreciate your offer so much, and I miss you so much too. Hopefully things will turn around for me, and we can plan a date asap! Hoping all is going ok for you and yours :)) ttyl asap! love and hugs, xoxoDelete