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Thursday, June 5, 2014

So You Think You're winning Myeloma

Hello loyal followers:  eekk, I really don't want to write what I'm reporting in this post, as writing out the numbers solidifies the facts and results I didn't expect. Call me naive, too optimistic or too hopeful.... but I was sure 10mg Revlimid was my magic pill back to Remission.

Heck, Revlimid brought me from 67% cancer to 10% in 2010 during my initial treatment prior to ASCT, so I "expected" this magic elixir to fix me up again. I really thought we'd see a considerable drop in my levels in a "good direction" this time. Well, not so much... and truth be told, I'm genuinely surprised my recent blood work revealed cancer is kinda winning. I say kinda winning, as my statistics aren't drop your jaw dramatic, but they show Myeloma is as strong as the chemo battling it. Rather than pummeling it into submission, Myeloma is holding steady (and creeping up), not going away this time. And yes, to those concerned that I am too lackadaisical about my treatment plan, this news kicked my butt.

And the #s are:
WBC's really low: 2.8 (4.0-11 scale) (Revlimid does contribute to compromising the immune system)
Platelets out of normal range now: 117 (130-400 scale)
M-Protein up again: 0.90 (normal = 0.0)
Beta Globulin Electrophoresis: 1.53 (0.65-1.10 scale)
Gamma Globulin Electrophoresis:  0.40 (0.70-1.60 scale)
IGA: 1110 (70-400 scale) and I keep hearing I am "high risk" IgA Myeloma
IGG: 296 (700-1600 scale)
IGM: 16 (40-230 scale) 

So the plan is: one more month (my request) status quo of 10mg Rev + Dex.
July will probably bring Rev up to 15mg, or out with Rev and in with Velcade, or try Rev + Vel + Dex.
Ugh, I am just not brave this time around, and I just want to feel good, and get back to "normal" (HA!). I am fearful of new side effects :/

At least I made it to Alissa's SDSU graduation last month!


I was able to attend my 4th 
at City of Hope, also last month!

 Dr Kogut, me, Dr Spielberger

 Dr Chai, me, Dr Farol 

My Stemmies are stored here
just in case I go for another Autologous Stem Cell Transplant
but at this time, the "risks" are greater than the chance of Remission


So that's my June story. We'll see what happens.
But for now, I am bummed Myeloma is being so obnoxious and proving to be a much stronger match for Revlimid's chemo powers then I anticipated.



8 comments:

  1. Julie,
    My reading of the MMRF data and the UAMS-MIRT statistics has shown that higher dosages the second time around are the norm. So, If you can stand the higher dose It might be a good idea to go ahead and jump into it. Hang in there, we all are pulling for you!
    Keith

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    1. AnonymousJune 06, 2014

      Hey Julie! Hang in girl. You will be in my thoughts and prayers and maybe we can rendevoux over summer. No pressure as I know you will be busy battling that stupid Myeloma. Love you, Gay

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    2. Hi Gay! Thanks for checking in! Enjoy retirement, and for sure we will plan a date asap! email me your personal email :) xoxo

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    3. Hi Keith! Thanks for checking in! We'll see how July goes with a higher dose and/or adding Velcade. Or maybe magically, Rev 10 this month will kick in and drop my #s :) Hoping all is well with you and you remain still smoldering!

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  2. Hi Julie,
    I am sorry you are having to deal with this and I can relate to not feeling as brave this time. I am in that same boat with myeloma having the upper hand right now for me. One thing I have learned from reading your blog is that you are strong and your strength will prevail. As hard as it can be to remain strong and be hopeful, you and I both have the warrior spirit within us. Sending you warm thoughts and hugs. Carole Leigh

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    Replies
    1. Hi Carole, thanks for checking in! ah yes, we are fighters and MM warriors. But my struggle seems so minimal to yours right now Carole! I've reread your blog and I take a deep breath for everything you have gone through! YOU are the brave and tough cookie! Hoping you continue to dominate MM and I look forward to your update! love and hugs to you!!!

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  3. Julie, I am sorry you are on the down part of the ride now.Yes numbers do matter so keep on top of them! I know you will be back up and feeling better soon.You are the best on staying positive so keep believing.All the rest of us are.Congratuations to Alissa!
    Ron

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    Replies
    1. Thanks Ron. Yes I am positive, or perhaps naive... hoping this stupid cancer just goes away. I will battle forward forever and see what happens, taking it a day at a time, month to month. I am so grateful to see both my kids graduate college. Mission accomplished :) Thanks for your continued support!

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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 Alissa 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 team, Dr Lee and Nurse Jalee at Kaiser PC, and Dr Spielberger and Dr Kogut at Sunset Kaiser/City of Hope hospital.
I began to formulate a new reality and accept my "New Normal".
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 remarkably 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!

And now... the 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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint!) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!!
.81 Aspirin to prevent DVT, Revlimid complications

June 2010:
High dose IV Cytoxan
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
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 the Heck is Multiple Myeloma?!

Multiple myeloma is a cancer of your plasma cells, a type of white blood cell present in your bone marrow. Plasma cells normally make proteins called antibodies to help you fight infections.
In multiple myeloma, a group of abnormal plasma cells (myeloma cells) multiplies, raising the number of plasma cells to a higher than normal level. Since these cells normally make proteins, the level of abnormal proteins in your blood also may go up. Health problems caused by multiple myeloma can affect your bones, immune system, kidneys and red blood cell count. Although the exact cause isn't known, doctors do know that multiple myeloma begins with one abnormal plasma cell in your bone marrow — the soft, blood-producing tissue that fills in the center of most of your bones. This abnormal cell then starts to multiply. Because abnormal cells don't mature and then die as normal cells do, they accumulate, eventually overwhelming the production of healthy cells. In healthy bone marrow, less than 5 percent of the cells are plasma cells. But in people with multiple myeloma, more than 10 percent of the cells may be plasma cells. Because myeloma cells may circulate in low numbers in your blood, they can populate bone marrow in other parts of your body, even far from where they began. That's why the disease is called multiple myeloma. Uncontrolled plasma cell growth can damage bones and surrounding tissue. It can also interfere with your immune system's ability to fight infections by inhibiting your body's production of normal antibodies. Researchers are studying the DNA of plasma cells to try to understand what changes occur that cause these cells to become cancer cells. Though they haven't yet discovered the cause of these changes, they have found that almost all people with multiple myeloma have genetic abnormalities in their plasma cells that probably contributed to the cancer. For example, many myeloma cells are missing all or part of one chromosome — chromosome 13. Cells with a missing or defective chromosome 13 tend to be more aggressive and harder to treat than are cells with a normal chromosome 13. ~ From the Mayo Clinic