Where do I begin! Time for my worn out comment about completing a previous post and then thinking, "Ok, next post will be uneventful and boring, and maybe not even necessary"... LOL,.. So Not True much anymore. Geezzz, if only I could report in, that my last 10 days between posts was in fact uneventful and boring. Nope, I'm learning this is not possible. So here goes the newest drama, and I'll let Google do the introductions:
What is a Skeletal Survey
What are Bone Lesions, Lytic Lesions
"What is a lytic lesion on a bone?
Soft spots appear as “holes” on a standard bone x-ray and are referred to as osteolytic lesions. These bone lesions weaken the bone, causing pain and increasing the risk of fractures. Bone loss frequently accompanies multiple myeloma, and 85% of patients diagnosed with multiple myeloma have some degree of bone loss."
"What causes lytic lesions in multiple myeloma?
Multiple myeloma bone lesions may be treated with bisphosphonates or radiation therapy. In myeloma there is an increase in osteoclast activity that is caused
by factors called osteoclastic activating factors or OAFs. These
osteoclastic activating factors are known to be released by tumor cells."
How'd this Happen ??
I met with my Dr 5.16.17 before my regular Darzalez infusion appointment. We discussed my recent Skeletal Scan and what showed up. Yep, I have a LYTIC LESION in my SKULL. A 7mm Hole in my Skull! And here I've been a bit "boastful", often exclaiming, " Oh, I have IgA myeloma, so I haven't had any bone involvement"... ahahaa shut up Julie... here's your payback. Who knows how long this little hole has been brewing in my skull? From the report, which I originally misunderstood as the long time preexisting lump bump (tumor?) on my Right side skull, is actually not that, but a NEW myeloma invader on my Left side skull, about an inch above my Left ear. Yep, saw it on the xray scan today. From details on the report, this new Hole was NOT seen on my last skeletal scan 12.15.15, so it appears that this lesion has been hollowing out it's living space during 2016. What's that saying: "I need this like a hole in the head"!!!
The Hole's Radiology Report
Wow, Oh Boy. Seriously did not see this coming. I just thought myeloma was systemically challenging my blood properties, blood plasma, my immune system, etc, and ruining my life in general... but I naively thought I wouldn't be a participant in "bone lesions". Ok ok, yes, I have been playing the ridiculous optimist card this whole journey to be honest, thinking I was a bit "different" and wouldn't be challenged in the same way as my myeloma peers. STUPID! Why did I have this "magical thinking"? Perhaps because my "high risk" status was always pretty successful initially at pummeling those errant myeloma cells, and responding well to most all treatments over the past 7 years. Heck, I went from IGA around 5700+ at diagnosis, to the 1000's, to the 500's, after just Revlimid and Dexamethasone, first part of 2010. My initial diagnosing Bone Marrow Biopsy showed 67% cancerous myeloma involved Plasma Cells, but after induction Rev Dex for 5 months, and only one IV infusion of Cytoxan, my pre Stem Cell Harvest bone marrow biopsy showed only 10% cancerous myeloma cells. I then survived Melphalan chemo with my July 2010 SCT, (but had lots of Hickman catheter drama), yet came out the other side, with Remission. And that remission, with Revlimid maintenance, lasted 2 and a half years, until I had to up the treatment level mid 2013. But I did respond to Rev, Dex again for 2 years, then had a great response to Kyprolis, Dex in 2016, until I became "Refractory" to it, and began the various versions of my current treatment of Darzalex, Pomalyst and Dexamethasone steroids.
So yes, I've been a bit "spoiled" (compared to the "typical" MM patient who presents with horrendous bone pain and bone lesions from the start). I, for whatever reason, was able to avoid the Bone Lesion Bus. Well welcome to the "honeycomb" style bone lesion club Julie. You have a HOLE IN YOUR HEAD! ahahha, ok, no jokes... well maybe one...
And the additional icing on my current cupcake, is my Neutropenic status from Pomalyst pummeling my immune system. Even with a lower, creative dose of 2mg alternated with 3mg, Pom just reduces my immune system to rather dysfunctional. So my Dr prescribed another round of Neupogen, Zarxio prior to starting my next Pom cycle this Friday. True story- I am quite Happy about this, as me and this "man-made form of granulocyte colony-stimulating factor (GCSF)" get along very happily. "G-CSF
is a substance produced by the body. It stimulates the growth of
neutrophils, a type of white blood cell important in the body’s fight
against infection." I will receive Zarxio injections for the next 3 days, and hope I can move from Neutropenic status, to having some fighting "Navy Seals" within me, armed and ready to battle off incoming Cooties!!!
Are you still with me? Following this ridiculousness?
I'll leave you with GOOD news finally!
My IGA went DOWN a bit this past month from high of 4130 in February to now, 449! Normal range is 70 - 400. So I am still Abnormal, and above the High end of normal, but wow, pretty amazing triplet cocktail currently saving my life!
My M Protein is "not detectable", but my Protein Electrophoresis is still "Abnormal".
I still have Good days and Lousy days, but with the new every-other-week Darzalex protocol, I am doing a bit more out and about. My main side effects are disabling fatigue and exhaustion, a bit of neuropathy in my feet and hands, headaches (ah ha! it's the "hole in my head" lesion doing it lol), still have unpredictable lower GI issues on on both "spectrums", blurriness, dizziness, swelling, achy skin, "chemo fog", etc., but things are certainly better than they were Oct 2016 thru Feb 2017! I am so grateful for all the brilliant medical professionals taking care of me and my myeloma peers.
Although it's laughable me trying to be me,
here's a sampling of my recent adventures, "trying to be normal"
(LOL, not knowing I have a Hole in my Skull LOL!)
(LOL, not knowing I have a Hole in my Skull LOL!)
Group Retirement Party last week
"Apple Raking" with these darling girls
Long overdue visit with these sweet supporter girlfriends
Ranch visit with these wanna be cowgirls
Guess who these characters are framing me?
Lucky Momma here :))
Scott drove, they shopped for picnic supplies,
they prepared lunch, and I relaxed and laughed
Beautiful Lake Casitas
with few humans around to share cooties with me
But it did just hit me-
This is my 7th year battling myeloma
This post is on the 7's
and I have a 7mm Hole in my Skull
Thank you reading, following, caring and commenting!
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can
Julie..did they recommend any zometa infusions for the bone lesion..or just let it be..hope WBC increases..congratulations on the decreasing IGA numbers.. love seeing the pics..encouraging all of us to participate in life as much as we can..
ReplyDeleteThank you so much Karen for being such a loyal follower and commenter :)) I've read about Zometa and Aredia and they "scare" me with the possibility of "ONJ",so I don't think I would do it, unless my bones were crumbling lol. And WBC news coming on my next post, along with a "dramatic" story of me facing my reality lol. Thank you Karen, and I hope all is well with your hubby. I will reply to your email too :))
Deletexoxo
How can I LOVE you so much when I just met you on Thursday? Well, I do.
ReplyDeleteAww you are too sweet to me Tanya. What an incredible story we have. Truly amazing how the "Universe" brought us together. I am so proud of you and all your achievements and I am so honored you are my very first scholarship recipient! I looooooove you and so look forward to our next meeting! Thank you for reading my blog and commenting. Means the world to me :)) xoxo
DeleteJust once I'd like to pass a SEVEN and find a very boring blog from you:
ReplyDelete"I'm so sorry to all my blog followers.... I have absolutely nothing new and exciting to report to you on this wonderful SEVEN day!"
But NOOOOOOOOOOOO....... I get home and race to my computer to check on your progress and
"I HAVE A HOLE IN MY HEAD!"
That's what I am reading....... To my very disbelieving eyes. Even though I had a little head's up yesterday...... I'm still in great disbelief.
So, let's make a deal. I'm going to race home from work on May 27 and with great excitement I'm going to turn on my computer. QUICKLY find Julie's Blog which is on my speed dial..... and it will say....
"I'm on the high end of normal..... but I'm normal indeed. That's it folks! Nothing new to report!"
I know, I know.....
You just want to be SPECIAL!
It isn't everyone that can say, "I have a hole in my head!"
Ok.... ok.... ok....
Enough attention for one day!!!!!
Love you Julie. Just trying to be my positive self. You know I'm here offering Hugs, Hugs, and more Hugs, my dear friend. Susan
Thank you Susan for your unwavering support and your "disbelief". So glad you finally made over for a visit and rootbeer floats, after planning this for how many years??? You are such a sweet friend, and I deeply appreciate all your love, support and caring as you do! love you, xoxo
DeleteI'm with annoymous ..boring.. would be great ..but relieved you posted.
ReplyDeleteHi Karen, thank you so much for checking in and following my crazy story. I wish for "boring" and no drama, but I seem to be a magnet for it lately. Just wait for my next post... truly, I veered away from "drama" all my life, and now it finds me :)) Hoping all is good with you and your hubby. xoxo
DeleteHello Karen,
ReplyDeleteI have been combing through the internet for anyone else who got lytic lesions in the skull and is also on darzalex treatment trying to find out if there is a correlation. I have been seeing a swelling on my Mandibular right side jaw since I started treatment. My mm oncologist told me it was stones in my parotid gland and to suck on lemons to make it dissipate. I was not in the mood to suck lemons but drank lemon water for an entire week. It did not go away. I fell last week and tore the ligaments in my ac joint ,went to emergency and the ER doctor asked if I fell on my face. She ordered a CT scan and I got the results back. I have several lytic lesions in my skull....I had a CT scan 6 months ago when I was on revdex and there were no lytic lesions. So even though I am responding amazingly to darzalex and spike has fallen to 2 from 28 and IGG all other numbers now falling to below normal. My liver enzymes took a very big hit AST ALT etc rising to 400 ....you mentioned being tired exhaustion ...I assume your liver is being hit by all the treatment and is having a hard time filtering....your neuropathy....after Revlimid I experienced horrifying neuropathy, sent from neurologist to rheumatologist all telling me it is due to mm ...duh....so I went to a naturopath and he suggested I try a vitamin b complex....Benfotiamine plus 2 other natural supplants....within a month I went from not being able to walk /wheelchair to no symptoms of neuropathy since...and do not be scared of Aredea....it will save you from a life of a paraplegic....the oncologist had suggested to me once every month ....I did it twice 2 years ago....I will do it again next week...the key to staying alive is not to do exactly what the oncologist tells you to do....do it just enough for your body to carry on....the aredea will strengthen and solidify a bit your lesions and prevent others from appearing. If it is in your head I suggest you ask your doctor to order a whole body ct scan to make sure there are no other surprises.