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Wednesday, July 18, 2018

What The Heck Zometa! A Week of Fevers and Pain

Hello 8.18.18

Really Body? What's up with all this torture? What did I ever do to you to deserve this backlash? Remember,... at this time in my life, we were supposed to be PLAYING, winding down my career, and chillin for a change? I won't even list all my mid-life, second half of my life goals and plans. It's just waaaaay too sad. Never ever, did I ever think I'd be faced with all the challenges I am. Mine and my husband's...


Everyone's Myeloma, or chonic, incurable, forever illness attacks differently. Everyone handles illness, pain and challenges differently. Myeloma faked me out in the beginning. Faked everyone out who knew me and saw me in public. No one could ever understand how sick I was on the inside, and the intensity of the monster growing daily inside of me. I didn't get it either or comprehend what "aggressive myeloma" meant back then. Now I do.

Immediately, after my Dec 30 2009 diagnosis, I was put on Dexamethasone steroids. Never had been on steroids in my life, so the fun ups, and the crazy downs, were a new ride for me. Back then, for a month, I started on 20mg 4 days on, 4 days off. But when when my Dr tried upping Revlimid from 10mg to 15mg, I developed the dreaded Revlimid body rash. So from February 2010 to end of May 2010, I was on 40mg of Dex, 4 days on, 4 days off. THAT'S 160mg OF STEROIDS PER WEEK FOR 4 MONTHS! Wow!!

As a result of this high dose, the many "typical myeloma side effects" remained "hidden" to me. And with all those steroids in me, Revlimid didn't stand a chance of causing me "volcanic GI issues", as the steroids corked me up! So thanks to steroids masking symptoms, I was thinking, "hey, this 70% myeloma cancer thing is "tolerable", and I can still continue on being "Julie"" LOL LOL

I then had one dose of IV Cytoxan, which woke me up and made me FEEL LIKE A SICK CANCER PATIENT for 24 hours. But after that, I sailed through the Stem Cell Transplant prep, harvesting 9.5 million stem cells, and the first few days as an inpatient at City of Hope Hospital wasn't bad at all. But midway through the process, when THE HIGH DOSE MELPHALAN CHEMO KICKED IN, I TRULY LEARNED WHAT A BEING A SUPER SICK CANCER PATIENT WAS ALL ABOUT. That was challenging beyond all words.

After my recovery in August and September, as I slowly crept back to beginning to feel like Julie again, and finding out that my SCT process was successful, I began to think I could put it all behind me, "and get back to my "normal" life again" LOL LOL. My son buzzed me October 1, 2010, and that was great symbolism of my new beginning! I remained on 5mg Revlimid maintenance for 2 years. I was very immune compromised, still extremely fatigued, and had GI issues, aches, pains, etc, but overall had a good quality of life that allowed me to get back to 50% of my life.

My Dr then wanted to try a "medication holiday", so I went off maintenance Revlimid. Within a year Myeloma roared back, late (2013) and the rest is history.


For 7 years, any xray, or skeletal scan I did, showed NO BONE INVOLVEMENT. I was a little snarky about this, as I always thought "I was different". Shame on me. Then my first visible lytic lesion was seen in my annual skeletal scan, April 2017. Of course it was a "Hole in my Head"!! A hole in my skull. Of course that's where my first lesion was seen. My myeloma cells definitely have a sense of humor with me! I didn't panic or worry, as me and my Drs seemed confident that was the "only one".

But a year later, April 2018, I was sent for a full body Pet CT Scan. If you've been following my blog, you know the dramatic and shocking news that the results brought. I think my Drs have "regret", or feel bad that none of my Drs had ever requested an earlier baseline Pet CT Scan for me. I'm a little upset it wasn't done sooner, but then again, "Ignorance is Bliss", and I lived for years thinking my bones were strong and "holeless"! My treatment meds probably wouldn't have been any different, just that Zometa may have been introduced years ago? Who knows and I don't look back with regrets, as perhaps not knowing this news, helped with my positive optimistic fighting attitude. Who knows if all my "INNUMERABLE" holes just grew in one year. Probably not possible. With the extensive amount of holes I have, and with terms on the scan result report mentioning something about lesions "treated", I've most likely been "holey" for sometime now. Thinking back over the years, I do recall several Drs mentioning that I should probably do Zomenta.

WELL I DID, and ZOMETA I HATE YOU! I hate what you have done to me this past week. I hate the pain and suffering you caused me. I hate the awful, high fevers (101+, 102+, 103+ for 3 days), I had to endure. And I still have a fever over 99 daily, some days over 100! 8 days so far, with today's reading, 100.9. I hate the awful, deep, painful, searing, pounding, slicing, piercing, electrical current pain you sent throughout my entire body, and weirdly all up and down my left side butt to lower leg. Crazy deep pain that drives me batty. I try to walk it out, stretch it out, sit it out, lay, lie it out, liniment it out, stamp it out, pound it out, pain pill it out, and it's relentless! Especially at night...

I read all about the side effects.Talked to tons of myeloma patients about their Zometa experiences. I did all the right things to "prevent extreme side effects". My infusion was 30 minutes long. My nurse did hydration before and after. I asked her to finish the rest of the bag, after Zometa was done. I hydrated like a fish. I always hydrate a lot. As a matter of fact, I'M SICK OF HYDRATING. I'm so tired of trying to do the right things, eat right, drink right, move right, blah blah blah. I did all the right things, AND I STILL HAD HORRIBLE SIDE EFFECTS, AND I STILL HAVE A FEVER, DAY 8! I still ache all over, and have a headache. I rarely get headaches. And when I move, I get surprising shocking twinges all of a sudden.

I am better, pain wise from a week ago for sure. A little more relief everyday. But yesterday, I knew in the middle of the night I still had a fever. When I took it, it was 99.8. Dang it! Thought I was done with fevers. But the fever yuckiness feeling is indisputable. Felt the same telltale signs again today... Yes, a Zometa fever for 8 days now.

Early yesterday, my husband had cataract surgery scheduled in the morning. I never feel well in the mornings anyway, and the fever was just complicating everything. Of course all week I "worried" that it was going on a week with a roller coaster fever, but each day I kept thinking it would disappear, and so would my awful symptoms. Tylenol and Advil of course masked the fever symptoms, and only when I let it's affects wear off, did I know the "real truth" about my status. All this was not what I had heard, not what I had read, not what I expected regarding Zomenta infusions. Zometa is not supposed to be a "big deal". It was a HUGE deal with me.

I worried about the length of time I've had a fever, so I had our super helper daughter go with Jim to his surgery, and I went to Urgent Care. They always apologize for the limitations of what they can do for me, as my situation is so complicated for Urgent Care, and I am always encouraged to go to ER instead. Um, Nope! Further away, I feel lousy, and waiting in ER! OMG, no thank you! I had a very caring UC Dr who set me up for many blood tests, bacteria tests, and a chest xray. She also contacted my Oncology Office, letting them know of my situation.

I was there for hours. Hours. I didn't bring my pantry and refrigerator with me, so midway through, I'm starving. I did have enough water in my car, so I kept hydrated. Funny though how I was in eyesight of the Vending Machine, but yuck! All the human cooties on that, grossed me out, no matter how hungry I was!

My labs came back ok. Not much different than they "normally" are... EXCEPT my WBC was skyscraper HIGH (for me) of 6.8. Ok, for most of you, that's normal, and good. My WBCs barely get out of the 2's... so to me, something was up. Must be a crazy battle inside me. Having a strong WBC, wow, my cells must partying it up. I pictured the newly powered whites beating up the myeloma cells, and the Zometa in there fueling the fire. I thought hmmmm, wonder if all my EXTREME PAIN and fevers for a week was due to Zometa doing something "good", powering up my system, infiltrating my bones, boosting up my plasma cells, and pummeling the myeloma cells?


My xray showed clear lungs, no pneumonia. Still waiting on the bacterial cultures. But I'm not worried. And thankfully my UC Dr did not want to give me antibiotics unnecessarily. I was beat up from being there for hours, but very appreciative for the quality care.

But I still have a fever...

So where does all this insanity leave me today, 8.18.18... still with a 99.4(am), 100.9(pm) fever, that of course varies with when I take Tylenol or Advil. The killer bone pain has subsided, but I tingle and get twinges all over. I feel weird feelings everywhere, even my teeth and jaw hurts periodically... great, here come's ONJ, my greatest fear with Zometa.

Who knows why I had such an awful and excruciatingly painful reaction to it, but as I said in my previous post, I just don't know if I can do it again... But, If, If, If, my myeloma labs I'll do next week, (and then see at my July 30 appointment), show that Zometa had a dramatic affect... maybe, just maybe I may "elect" to SUFFER again in several months. And yes friends, I will grow up, and ask for stronger big girl Pain Meds!!! And to those that have mentioned Xgeva, I will inquire about that too. But for now I am just reveling in feeling a tiny bit, yes a tiny bit, better each hour!



Live happy, live well, and make a difference somewhere, somehow, 
with someone or something as often as you can!



2 comments:

  1. Julie,
    I am beyond sorry for the reaction you have had to Zometa. With EZ just having gone through having a high fever for three days, I cannot imagine having one for eight! He was on Aredia, not Zometa to begin with back for two years beginning in 2010 and never had a reaction. Currently he is on Xgeva injections monthly, and has had no reaction to this either. I like that it is not by infusion, and that it doesn’t adversely affect the kidneys, being that he only has one! Your body seems so sensitive to all these chemicals, which is not fun for sure. Such a Catch 22...you need this but it makes you sick to get it. I wonder if one of the other two bone strengtheners might cause less of a reaction. Worth a try?

    EZ is not unlike you with all the bone involvement shown on PET scan. It is a struggle to live life fearing something could break at any moment. As you know, we try to live in faith, not fear, always being cautious, or we would be robbed of so many of the things we love. All we can do is be wise with our treatment options, try to take precautions, and take it one day at a time.

    We go for EZ’s six week check-up post transplant, on Monday! Each day gets better, especially after that pneumonia blip last week!! Don’t be afraid to consider a second transplant. It has been so nice not be on any chemo for a bit, and amazingly, EZ is not in pain, other than the dull sacral pain he has had since 2010. That is such a blessing!! It feels like a fresh re-start with cells that are 8 years younger!

    You are a survivor, and your body has been strong in spite of everything thrown at it. Continue giving your MM a run for its money! Praying so hard for a cure for this awful cancer, and all cancers for that matter.

    Sending our love and healing prayers to you. Glad you had a good UC doc to run tests and reassure you! XOXOXO

    ReplyDelete
    Replies
    1. Thank you Linda for all your love and support and helpful comments! I am so thrilled for Ernie's SCT success! Truly, the most seamless SCT process I have ever heard of. Such a warrior team he and your entire family are!
      And after I sent you a PM, my Dr called my and she was already thinking about Xgeva for me, since I had such a ridiculous reax to Zometa!
      And yes, I don't live in "fear" but I sure watch my step more carefully now that I know I have "holely" bones! One day I will get back on a horse, but first to heal my crazy broken rib LOL.
      Thank you again for all your support, and sharing your lives with all of us. Love your pictures and journies! xoxoxoxoxo

      Delete

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
B-12
.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?”)

Infections

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.