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Thursday, January 15, 2015

Hello Revlimid 10mg + 15mg for 2015

Well Happy New Year everyone! I just realized I haven't posted in 2015 yet!
2015 will be my year of symbolic 5's, so I apologize in advance for my 5-related silliness to come. I think I'll post on the 5's this year. So look for my updates on the 5th or 15th or 25th. Sorry... not sorry... numbers rule my life now, so I'll make them fun and symbolic!


So after spending most of December a sickie, I finally met with my oncologist the beginning of January, and we decided to move from Revlimid 10mg to 15mg. Might not sound like a big deal, but back in early 2010, during my initial myeloma treatments, Rev 15mg and I did not get along. As a matter of fact, I had a very scary allergic rash reaction. Within several days (maybe a week) of being on Rev 15mg, I began to get quite itchy and realized I had large patchy, raised bumps on my chest, back, arms and scalp. My oncologist had me immediately stop the 15mg and start chewing Benadryl like candy. She also increased Dexamethasone to 40mg- 4 days on, 4 days off! How I handled that, wow... I don't know. Actually I do recall how "yucky" I felt... but I was so stunned by my cancer diagnosis, that I just did what I had to do, and just got through it, to get to the goal: stem cell transplant and remission.

So when we discussed moving from 10mg to 15mg, I suggested starting gradually and alternating 10mg with 15mg. Yes, how novel and creative of me :) and you know what... so far so good! The prescription was processed on... you guessed it... 1/5/15 and I received it the next day. I'm in over 10 days now, and other than the USUAL side effects (too many to list) .. oh what the heck, here goes: tired, fatigued, buzzing, dizzzzzzzy, hot/cold, punched in the stomach feeling, bit of nausea, GI issues (corked up to volcanic lava), living in the bathroom on some days, breathless, bloated, restless sleep, sweating, should I go on... lol.. I'm doing ok!


Just look at all those pretty colors going after those nasty myeloma cells! (And that's just one of my pill containers!) Can't wait to see how 10 + 15 does. Yep! Cool idea I had! I have a SCT oncology appointment this coming Monday, and then my regular oncology appointment at the end of the month. I took blood tests about 5 days ago, but I don't think we'll see any dramatic changes yet. Perhaps when I update my tests closer to my end of the month appointment, maybe Rev 15 will have had the opportunity to annihilate more myeloma cells! 
Revv it up Rev!!!


Here's my stats from my last December appointment: 

WBCs = 2.7 (normal = 4 - 11) ouch! no wonder I feel yucky and got sick

IgA = 1070 (normal = 70 - 400) guess I really do have myeloma ;)
IgG =   264 (normal = 700 - 1600)
IgM =    17 (normal = 40 - 230)
ANC = 1.4 (normal = 1.8 - 7)
No wonder I am so immune compromised!

And dang it... M-Protein jumped up to 1.14 (sad face here)... and this level is what motivated us to commit me to moving to Rev 15mg-  (normal/remission = 0.0) 

My Thoughts Exactly!
So that's my 1/15/15 story. I still only have a few good days per week, and can only go into my office 2 days a week, as after my Dex steroid crash, along with Rev's lovely side effects, it's hello "Chew and Poo" lifestyle. The only way I can go anywhere, is to not eat before I leave the house (and take an Imodium pill), as I don't want any surprise "volcanic reactions". And it's so random too. I was feeling ok the other day, and after eating something as benign as scrambled eggs with spinach (at home) ... boom not long after... LAVA... lol

Hoping 2015 is off to a great beginning for all you, and I do really appreciate you reading and commenting on my posts. I'm thrilled to be here 5 years after diagnosis! I still feel so surreal about my diagnosis and still process all of this as if it's happening to someone else (except when I'm in the bathroom!)

 

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



4 comments:

  1. Hi Julie! Your suggestion about alternating 10mg with the 15 mg Rev goes to show that we need to be our own best advocates. Glad you thought of that and pray that it continues to make things tolerable for your system. I look forward to seeing all the ways you get creative with the number 5, and hope your labs improve in January! Keep the positive attitude and Happy New Year!

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    1. Thanks so much for checking in Linda and for your continued support and encouragement! How's EZ doing? Love your pictures and so glad you updated us! Happy 2015, and all the best for your beautiful family! xoxo

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  2. Hi Julie, I agree with Linda's comments.....I am praying the changes of the medications will be effective in a positive way. We will be looking to see what the number 5 brings...... Stay strong and just know how much you are loved...... ... 2015 will be a better year !!!!!!!! We hope to see you when it is a good day for you..... Hugs, Evelyn and Neel

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    Replies
    1. Thank you so much for your continued support and encouragement Evelyn and Neel! Yes, I will get back to you asap re a date for us!! love and thanks, 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 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
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.