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

Friday, April 4, 2014

Climbing the Revlimid ladder: Hello 10mg and Beyond

Ok, Ok, I surrender! I accept I don't have magical Myeloma "curative" powers. I accept cancer is stronger than me, and I have to step up my battle. Silly me, I really thought I could just low dose pummel Myeloma back into Remission submission with minimal chemo dosages. HA! I'm mortal after all.

Inspiration from my sweet, talented friend Kathy!
Thursday I met with my City of Hope SCT oncologist Dr Spielberger (who is Director of the BMT/SCT Department). We agreed to step up Rev from 5mg to 10m to 15mg... onwards and upwards if necessary. He's thinking my system is different now, and I won't have the crazy allergic reax I did in 2010. Ok, I'm feeling brave. Be scared dysfunctional Myeloma contaminated plasma cells, here comes more Rev!!

Ten it is!
Ten after the 10th of April
Ten is Tenable!
Ten is no longer Tentative!

Then today, I met with my wonderful primary hematologist-oncologist Dr Lee, and she agrees with the plan. She fully understands my "go slow" perspective, and agrees with moving on to 10mg, then seeing how my numbers are (as I have monthly blood tests and monthly meetings with her).
We talked about how well I did with 10mg in 2010. How 10mg brought me from 67% cancerous Myeloma status, down to 10% cancer, prior to my Autologous Stem Cell Transplant, which then brought me to full Remission (CR) status August 2010. Ha! that's a lot of Ten's! (10mg in 2010 which = 10%)! Ten must be my magic number, right?!
I've been VERY lucky to never have had any "bone involvement", and all my skeletal scans have been NORMAL. Not to mention, my current CBC's don't look too bad either. I'm still sub-normal on Whites, but most of my CBC's are at the low end of Normal. Shocking after being such a sickie for Feb and March! Guess all the Gerber baby food Jim buys for me is keeping me healthy :)

Here's my Immunoglobulin status as of April blood tests:
IgG = 309 (normal range = 700 -1600)
IgA = 1390 (normal range = 70 - 400) I was 5700+ + at diagnosis!
IgM = 16 (normal range = 40 - 230)

M-Protein, Serum = .99 (Remission = Zero: 0.0)

More inspiration from creative and talented Kathy!
Ok Revlimid, let your 10mg Tenacious Tentacles tackle Myeloma into oblivion! I am no longer Tentative about moving to Ten mg :) Big deal right? And embarrassing, as most of you Myeloma warriors out there started on 25mg, and here I've been whining about moving beyond 5mg. Yeah, I'm a medication whimp!

Goodbye 5mg Rev! Just took my last pill of you with "Tenacious" Purple Cowboy:

Seriously great red wine (right Kerry and Henry!)
I'm just teasing!! water, herb tea and chemo for me.

So get to work Rev 10 and Dex!!! Get 'er done my ol stand-by Revlimid, so I don't have to try Velcade, Kyprolis, Pomalyst, Doxil, etc, and worry about new side effects... sorry, I'm a scaredy-cat and HATE feeling sick!!!

Hoping 10mg gets me well enough to continue my counseling Tenure, and I make it to our new offices Dec 2014 or Jan 2015?

 Thanks Connie for taking this great picture of me being silly!

I think I've Tendered enough 10 references forever, right?! 
Thank you so very much for following, reading, commenting on and tolerating my goofy posts.  Your visible and invisible support cheers me on!




8 comments:

  1. Julie, Pat Killingsworth has written a number of times about how his ASCT did fail; however, it "reset" his system and allowed successful use of drugs that had previously caused him serious problems. Here's hoping that your body will react well to the larger dose(s) of Rev. Lovey

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    1. Thank you Lovey. So far so good. My scalp is really itchy and remember that from 2010, but overall, I feel ok. Hope you are doing well! :)

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  2. Jennifer AbramsApril 08, 2014

    Julie,

    I haven't written on your blog because I have very cowardly not known what to say. You would think that someone who has been through some of what you have (not comparing us at all) would be able to come up with some words of encouragement that no one else has said, but after all this time I can't. So I have decided to just give up and let you know that I think about you often and have been following your blog. I am so happy that you are so educated about your journey and are obviously getting the very best of care. you have many followers that are so helpful and many good friends. I hope you count me among them. Best wishes ever.

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    1. Hi Jennifer, I am so glad you contacted me after all these years!! And you have been thru a huge cancer battle too! I am so glad you let me know you are following my blog, as I have so many invisible followers lol. You are not cowardly at all! I really appreciate your words here! Just you dropping by to say HI was wonderful, and I send you an email now :) xoxo

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  3. Julie,
    I have read your last blog entry through and through. My advice is to attack the cancer, by whatever means you and your doctors can muster! Also, do not be afraid to admit you are afraid.........do not hide behind humor....... all of us out here in Myeloma land know......My brother and father were very afraid......My diagnosis frightens me.... I am scared, shitless...... every damn time I go in for tests.... it is like waiting for the trap door to fall or the guillotine to cut my head off! I am just speaking from my sincere self.... I am not as far along as you are.... but I know what is ahead of me???? My brother's condition was identical to mine in 2000.... so .... please, seek aggressive treatment.... pour out all your will and all you can now.....it is all you can do....... and be assured that in your innermost, you have done all you can, under what modern science can advance!
    I apologize for my forwardness,
    Take
    care,
    Keith

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    1. Hi Keith! no need to apologize! I don't see your message as inappropriate or too "forward" at all! I sincerely appreciate your perspective, passion and insights here. And you make me think ... I really am not afraid... perhaps I am too naive and don't know what is in my future as (unfortunately) you do because of your family history and losses... which I am so very sorry for. I cannot imagine watching your family being diagnosed one after the other, then losing them, then having to live on the Myeloma precipice as you do. That is scary! You are the brave one Keith. And I don't know how I would handle things in your circumstances. I am not afraid now, but I am pissed off this happened to me. "Why me"... blah blah... but I also feel so fortunate that I have had topline care, and my insurance and DRs will do whatever I want. If my #s were moving at lightening speed to my 2010 #s, I would be acting faster than fast, and taking every type of treatment out there NOW! In 2010, I was on the super aggressive plan! As for my sense of humor, that's just me. Life is so serious in so many ways; and like everyone else, cancer has not been my only life challenge. Humor and seeing the glass half full has always been how I cope with heavy issues.
      I appreciate your comments, thoughtfulness and encouragement Keith! Thank you for caring and commenting!!!

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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