Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Friday, October 27, 2017

Some Pretty Amazing News!

10.27.17

Hello and almost good-bye to October!
As the months fly by, I marvel they do. Who would have thought I'd still be alive. Sorry, I know I keep mentioning this, but in the Myeloma world, each day is a gift and a surprise.


Yes, I process my treatment success everyday I wake up. For those of you that follow myeloma blogs, chats, research, support groups, etc, you know exactly why I feel this way. My heart hurts for those that suffer more than I do, and for those that have not had the treatment success I have. Believe me, I am grateful for every waking moment I have, no matter what side effects I am enduring. As it's said, for most anything in life... It Can Always Be Worse.

I had my Darzalex infusion this past Tuesday. This is my 2nd with the monthly protocol schedule. Took my weekly 20mg Dex steroids prior to going, and as always, I show up to the chemo lab in fine spirits. Too fine for the chemo lab. So ironic! But I temper my exuberance, and try to "act appropriately". As always, I make new friends, and see buddies. The time flies for me, as I read online, chat with the staff and other patients, and consider taking a nap when the "Bag O Benadryl" hits me. But this week, it didn't put my lights out, just made me feel slightly goofy and groggy.


Here's my myeloma buddy Gary, who also happens to be my neighbor (yes, both of us with myeloma, within 2 blocks of each other!). Tuesday was Gary's first Kyprolis infusion. He was diagnosed about 6 months after me, and we've had very similar treatments. He's IgG Kappa Light Chains. I'm IgA Lambda. Yes, neighbors... and same medical insurance, same medical team. Both of us having our Stem Cell Transplants in 2010 at City of Hope. Both of us very similar treatment responses too. Process that!

After my Tuesday infusion, I have about 36-48 hours of feeling ok. Then late Wednesday, and for sure when I wake up Thursday, the yucky begins. Blah, lots of blah. Headache, bone aches, skin aches, dizzy, nausea, bloated, cranky, some neuropathy in my feet and hands, etc. But overall, not horrible. Just slightly miserable. For the "normal person", it would be like getting, or getting over the flu. But I know it will pass, and I just deal with it. As I've mentioned before, it's crazy KNOWING I'll be "sick" once a week, for a few days. Predictable, though I never know to what extent. I mention all of this, as prior to Tuesday's Darzalex, I managed to fit in several fun events, and even survived my Dental cleaning without getting "cross contamination cooties"! I was supposed to "pre-med" for the teeth cleaning, but when I read up on Clindamycin side effects, I opted out. I took my chances that my immune system could battle whatever cooties were stirred up, and sure enough, so far, indeed I am ok. Shocking!

Little did I know HOW STRONG MY IMMUNE SYSTEM WAS! Take a look at these labs I did on Monday, for my Tuesday Darza infusion. Haven't been this healthy in a decade! Unbelievable! Maybe my viles were switched with a "healthy" person ;)

Whoa! What's going on here?! Seriously unbelievable stats! 

I'm winning!!! WhooHoo :)) 

And just in case you missed my previous post, with my wonderful IgA stats, here they are again. Out of the "normal range", but hey, I'll take this, over what was going on earlier in the year, before Darzalez, Pomalyst, Dex steroids. Sorry if I am repetitive in my posts, but I'm fascinated that, #1, I have cancer, #2, I have incurable Myeloma, #3, that I have been in treatment for almost 8 years, #4, that I am still here, and in the "relative good health" I am in, #5, that the amazing world of myeloma research keeps coming up with new treatment options for me, that, #6, is tolerable and livable, with some semblance of quality of life, and #7, I have a fantastic medical team that takes such wonderful care of me, extending my life beyond expectations! 

Speaking of that, in the previous week, I managed to get out and about have some fun adventures! 

 Alissa, Nala, Me, Hanna, dear friend Kathy and Portia
all enjoying the doggie version of Relay for Life:
Bark for Life! 

 Alissa and Nala as "super girls" 
Me and Hanna, just being us 

 ========================

  Next day, was an Oktoberfest, VW show
Remember my cute lil "bucket list Bug"
Well I made it! 2 events in one weekend. 
I was exhausted, but made me feel almost "normal"...

 Aren't these Bugs just so cute! 
They were part of a car club called the "Smurfs"!

And surprise, surprise, my incredible chemo pharmacist
Dr Henry Chen and his family suddenly appeared!
We were both so shocked to see each other there.
He's just the most amazing supporter (and Dr Pal, Dr Jen too!)
So genuinely caring for all us patients!

Perhaps I've mentioned it before, but Dr Henry and I discussed the fact that I'm the Darzalex "pioneer" at our Kaiser facility. So far, I'm the only patient that has "tolerated" this protocol. I'm pretty darn proud of that!  

So much more to say and share, but my headache and aches, metal mouth and nausea, and other crash symptoms are getting the best of me right now... so I'll end here. But again, I can't say it enough, how grateful, thankful, mystified and thrilled I am to share my amazing status and positive updates with you and the world. Thank you for checking in, caring and commenting as you do. I may not "know you", but I sure do appreciate all my readers.

Happy Halloween to those that celebrate



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



Posted by

10 comments:

  1. AnonymousOctober 30, 2017

    So glad to see you are doing well Julie!! Thankful for this amazing treatment that has worked wonders for both you and my mom!!
    Happy Halloween!
    Much Love from Canada!!
    Una

    ReplyDelete
    Replies
    1. JulieNovember 06, 2017

      Hi Una! Thank you for letting me know Mom is ok too! Is she on the monthly Darza schedule now? On any companion meds like me? Do you, she, follow the Myeloma Crowd facebook posts? So many amazing posts there from all the Myeloma warriors out there. Thanks for always checking in! Love and hugs to you and Mom xoxo :))

      Delete
    2. AnonymousNovember 09, 2017

      Julie,
      My mom has now been on the monthly Darza schedule for hmmm.. I want to say 4-5 months, She is also on the Pomalyst and only takes Dex on the days of the Darza infusion, dosage I am not too sure of. She feels crappy a couple days after the Infusion, she really hates the Dex. But aside from that not really any other symptoms!

      Delete
    3. JulieNovember 10, 2017

      O wow! Mom and I are very similar. I think I am on monthly Darza #3, maybe 20 total? Thank you for letting me know her details Una.
      I sometimes skip Dex on my Darza off weeks, so I can have a tiny social life lol. I feel ok for about 36 hours after Dex/Darza, then the slow decline happens, and I feel blah, lousy, achy for several days. But I sure don't have all the GI drama I did with Revlimid.
      When was Mom diagnosed? What "type" of MM does she have. I'm IgA Lambda.
      Thanks soo much for all your kind messages :)) xoxo

      Delete
    4. AnonymousNovember 13, 2017

      My mom, Marija, was diagnosed Oct 23, 2013. She originally had a small Mspike when diagnosed, that went away almost immediately upon beginning treatment. She had her first stem cell in April 2014 and then relapsed May 2016 at which point her Myeloma was only detectable through her Light Chains, by January 2017 the Myeloma was out of control and she went in for a Second stem cell and has been doing great ever since! I truly believe the Darza treatment regime is a game changer! so unlike all the other treatments!! Her oncologist strongly suggested she continue with the Darza despite the second transplant wiping out the Myeloma and as a family we agreed, the benefits definitely out weigh the side effects!

      Delete
  2. WendyNovember 04, 2017

    So happy you are doing well. My husband, Curt, is also. It is amazing how far drug research has come in the treatment of MM. Curt is treated at Dana Farber in Boston. The people there are brilliant and kind. So nice.

    ReplyDelete
    Replies
    1. JulieNovember 06, 2017

      Whoohoo Wendy! Thank you for letting me know your hubby Curt is doing well. Is he on Darza and companion meds too? Yes, it's horrible to have myeloma, but since we do, we are so fortunate for all the medication and research advancements. Scary to think what it could be! Yes, I have heard wonderful things about Dana Farber. If we have great care, we have everything, especially in this day and age of "turbulent" medical coverage times! Thank you for always checking in, and updating me :)) xoxo

      Delete
    2. WendyNovember 13, 2017

      Totally agree about great care. Curt is on Pomalyst plus a Dana Farber trial drug called ACY-241. So far, so good. He naps everyday, but that's OK with me. Curt also takes Dex--watch out on those days! Sounds like you have great care, too.
      I love your pictures. You look adorable and happy. As I think I've said before, attitude has a lot to do with being and feeling well.

      Delete
  3. AnonymousNovember 04, 2017

    Julie, do you have a fb or some other form of contact. I want to show you something really important. :) I hope you remember me as I was one of your students.

    Sincerely, Juan

    ReplyDelete
    Replies
    1. JulieNovember 06, 2017

      Hi Juan, of course I will always remember you :))
      Thanks for checking in, and I will email you... hoping I have the correct email address for you. If not, you still have all mine :)) xoxo

      Delete

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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
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.