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Wednesday, May 17, 2017

Not Liking Lytic Lesions

Hello 5.17.17

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!)

 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 

Mini Mother's Day road trip, great fun!
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


  1. 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..

    1. Thank 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 :))

  2. How can I LOVE you so much when I just met you on Thursday? Well, I do.

    1. Aww 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

  3. AnonymousMay 25, 2017

    Just once I'd like to pass a SEVEN and find a very boring blog from you:
    "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


    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

    1. 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

  4. I'm with annoymous ..boring.. would be great ..but relieved you posted.

    1. Hi 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

  5. Hello Karen,
    I 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 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 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 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 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.


My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!

What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)


Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.