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Tuesday, February 19, 2019

Go Steroids, Velcade, Cytoxan! Some Good News for a Change

Hello 2.19.19

I refer to my crazy Mondays now as "Medication Madness Monday", so this post comes a day after my weekly cocktail of 40mg of Dex steroids, Velcade shot, and 8 Cytoxan-Cyclophosphamide pills, and my February monthly status Dr appointment. I began this post around midnight last night, still hyped up and jolly on steroids, and planned to continue a lively, positive, good news update later today, but sadly today went from what should have been a quick Dr appt to an all day traffic nightmare...

Yes, the day, and this post update, is a wash, as it became a caregiving day for my hubby with Dr appts, etc, for him. We got caught up in a horrible freeway backup, accident, fatality situation, that caused a nightmare traffic jam on our local freeways and local streets. After inching along for hours, I finally decided to make a U turn (like so many others), as our route was going nowhere at 2 miles an hour... I was parched, hungry and felt lousier and lousier by the moment, as Tuesday begins my Dex and overall medication crash. Luckily, earlier, I went with my myeloma intuition, and didn't eat or drink anything before leaving the house- (not healthy, but necessary). As I've mentioned so many times here, and told so many stories of "near misses", I do not eat, or drink before I go anywhere, so there's little chance of a "biological emergency" on the freeway. And wow, was today a perfect example of why I do that! As we sat in sloth style crawling traffic, I couldn't help but think of all the potential emergencies people could be having in their cars, stuck on the freeway and side streets. Just awful. Been there, done that with way too many "volcanic biological emergencies", over the 9 years of myeloma treatment. I never want to experience an angry, desperate GI system while stuck in a car ever again!

So after crawling along getting no where, breathing car exhaust fumes, and fearing I might run out of gas, I realized we could be caught in this nightmare for hours. Thankfully, that U turn brought me by a gas station. While there, I also considered using the restroom, but really didn't want to, as I avoid public germy places as much as I can. Ironically, (and I was glad), it was "out of service". Clear message, right, to Stay out! But also not good to hold my pee, as my Dr told me Cytoxan-Cyclophosphamide is hard on the bladder and kidneys.... so here I am not hydrating and not peeing. Just great for my poor body on day 2 of treatment medications, when they're revving up the most!

Meanwhile the traffic was only getting worse, as the late afternoon, evening commute had begun, so I just gave up trying to get home, and decided we'd go out to eat while the traffic chaos died down. The irony was we were right across the street from where we had our wedding reception, a zillion years ago, so that became our dinner destination. Ah, this life and all it's crazy twists and turns! So here I am trying to update this post at 9:30pm, going on 10pm going on 11pm, going on 12am... exhausted mentally and physically, so this will have to suffice for my 2.19.19 update, which was going to be newsy and funny. But I'm just too beat up to upload screenshots of my recent labs, and write in detail about my news. Crazy what a difference a day makes with Dex! Yesterday I was so peppy and energized and funny... today... drained, frustrated, and not so funny and fun anymore, as the sad circumstances of my husband's situation, and the impact on him, me, and us as a couple weighs heavy on me today...

Here are the headlines of what I had planned to show and tell you:

IGA = 2000 in Nov, now 1230 (normal 70-400)
M Protein = 2.19 in Nov, now 1.01 (normal = 0)
Beta2Microgloblin = 2.9 in Sept, now 2.1 (normal below 1.8)
Light Chains = subnormal
CBCs not bad, Not Neutropenic!
Body organ stats good considering 9 years of chemo battering!- this amazes me!

Also wanted to mention a Weird change of my Velcade shot today. Normally I receive 1 injection for 1.59mg/ml, but today my dose came as 2 shots. At first I was alarmed and thought I was getting a double dose, but the nurse checked and rechecked, and we confirmed that it was the same dose, but the pharmacy sent it as 2 injections, or 2 needle sticks. Hmmmm, never had this offered like this before. We had another nurse come over for consultation too, and everyone said it can be done either way. Turns out the concern is injecting too much SubQ into one area. So it is often divided up into 2 spots. For those of you familiar with Velcade, what is your experience with injections?

Up to now, I have the injections in my lower stomach, or my "jelly-belly" as I affectionately call that area :)) We alternate L and R sides each week, but it has only been one injection stick, not 2. The nurses often assume in the arm, but I have never done it there. So far, I do not have any new side effects from 2 sticks, perhaps a little less irritation, as was suggested by the nurses. Just checked. Yep, 2 red spots, not 1. But I don't have any itching or pain... yet... When I began Velcade, some injection sites actually turned to bruises. Some super itchy. Some painful. So far, most importantly, very little Neuropathy! Thank goodness for that gift!

Life continues to be a crazy roller coaster with my hubby's Alzheimer's decline... decisions, decisions... ugh... so tragic on all levels...

Rain, Rain, Rain = Muck, Muck, Muck here... cold, cold, cold... done with Winter, thank you!

And I can't help thinking... What's next after this triplet, when I become refractory to it... when myeloma outsmarts the chemicals trying to outsmart myeloma... next up clinical trials??? Clinical Trials Scare Me... as you know, I like some semblance of control over dosage, and you can't chose your dose in Trials! Well, one day at a time, one challenge at a time, one crazy life adventure at a time. Cheers to surviving all I have, on so many levels, and you to, for all you have dealt with in your lives. So many challenges, on so many levels for everyone! But again, I'm always always so very very grateful for my amazing Insurance, my family, friends, and all the good that has been in my life!

Here's a walk, rather a read, down memory lane of my posts this time (February), of previous years:

Such an evolution of self, and this blog! Yet, how much the same things are!


  1. I have absolutely no idea what that kind of traffic would be like. That would be terrible to deal with. Sorry you had to have that stress on a day when you so didn't need it. Hugs. JC

  2. Hi Jan, thank you for always reading and commenting. Your friendship means so much to me :)) xoxo

  3. Dear Julie, I've been wondering how you are? Since there is no February 29th this year, I'm sad we will have to wait until March 9th to hear from you. Hope you are coping with all the challenges with your trademark courage and humor. A

    1. Aww Anonymous :)) thank you so much for caring as you do! When I realized there wasn't a 2.29.19 this year, I debated posting on 2.28 or 3.1, but I wound up with a lousy head, chest cold, and didn't have the energy to write, so I skipped the post. So sweet of you to notice my absence, and mention my next on the 9's, 3.9.19! You truly are a loyal follower :)) I'm doing better now, but still have the residuals from this lousy cold, but so grateful it's not the flu, or pneumonia, like so many MM patients wind up with. Hoping you and your are doing well, and please let me know who you are, as I "know" you are one of my blog friends, but you didn't leave your name :(( Thank you for your kindness and comment! xoxo

  4. Well I just wrote a comment but it seemed to disappear into thin air. So I'll just say, I don't know how you are doing it with hubby's Alzheimer.

    1. Aww, thank you for your support and understanding Christina! Yes, my life is so incredibly challenging, yet so wonderful in contradicting ways. And you, too... omg, it is so crazy what your hubby was Dx with, and how he is now going thru what you went thru years ago. I am so very sorry for his Dx and treatment journey :(( Perhaps our Dx and treatment journey better prepared us to be caregivers for our hubbies. Just can't believe what life dishes out to us. Both our lives are "real life movies"... this stuff just can't be made up, right. Take care Christina, and I wish B all the best in his chemo and SCT BMT journey xoxo


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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.