Tuesday, January 14, 2014
New year, not so new meds, and the old plan is ok with me!
Hoping your 2014 is off to a wonderful start for you and yours, and great things come your way this year!
Funny how old aspects and milestones of my cancer life randomly hit me. As I just wrote 2014, it suddenly sunk in that I have had the formal diagnosis of cancer for 4 years now! Who knows how long it was brewing within me prior to diagnosis..., making the 4 years into 5, 6, 7, double? triple? years ... I'll never know the what, when, why, how and actual trigger of Myeloma... but that's ok. I have accepted that I have an incurable, terminal cancer, or in softer words, a "chronic illness". Some are bothered when I refer to my situation as terminal, and they quickly say, "well you know Julie... everyone is terminal"... ok... whatever makes them feel better... I live with my reality.
Seriously though, I am so grateful I am still here. Every morning I wake up, I really do take a second breath of realization, that I AM HERE... that I woke up to embrace another day!
I feel fortunate for the "quality of life" I do still have considering the circumstances and what I could be feeling and enduring.
When people ask how I am, I generally reply "ok". Not bad for someone in my situation. I'm here (wherever that here/there might be), I am vertical, I am functional, I am able to engage in life/work in small doses, and I am tolerating my new chemo regimen, and most importantly, I am not hugging a toilet !!! Truly, I feel so grateful for the little things in my world, I am still able to embrace daily.
And I will always feel so blessed for the medical insurance I've had, that continues to provide me with what I know to be, excellent medical care and a wonderful team of caring Doctors and Nurses. Lucky me!!!
And so on to my current 2014 treatment plan and stats:
Check out my blog entry from November 18, 2013 for a pictorial of my medications.
I am liking only doing 20mg of Dexamethasone steroids only ONE day a week. So tolerable compared to my 2010 initial regimen of 40mg 4 days on, 4 day off!!
The current low dose 5mg Revlimid is also quite tolerable, although fatiguing and tiring, and bit of neuropathy is back.
Thankfully, both meds have put a detectable U-turn in Myeloma's forward march!
My immune system remains challenged... so please stay away from me if you are a sickie, or around anyone that's is or has been sick!!!
The combination of all the meds do make me feel like someone has punched me in the stomach some days, but again, I feel so fortunate that I tolerate the meds as I do. As a matter of fact, I need to go take them now... be right back...
My most recent status in number:
IgA = 1890 for December
January's blood tests show IgA = 1240
Still high, but I'll take the downward slide!
(Normal range is 70-400)
Goooooooo Revlimid and Dex! Stomp and chomp those Myeloma cells!!
M-Protein was 1.40 in December, and January's blood tests show .84
This measurement detects the existence of Myeloma in my blood plasma
(Remission = 0)
But I'll take this, thank you chemo and steroids!
So in summary, we are not being super aggressive with the meds, as I value my quality of life and don't want to feel horrible from high dose meds. But the low dose I am on, is WORKING!!!
I always visualize the chemo and steroids in my system gobbling up the cancer cells like "Pac-man" ! And I just stumbled on this timely and so relevant element of the game:
I quote from Wikipedia: "Pac-Man was designed to have no ending – as long as the player keeps at least one life, he or she should be able to play the game indefinitely."
Well that sure sums it all up for me... keep one life... play indefinitely, no ending!!! wow!! never knew!!! Take that Myeloma!!!
My Kaiser-City of Hope oncologist did discuss the pros and cons of a second (autologous) stem cell transplant, but we're going with the chemo meds first. Just something he wants me to think about, as they weigh the pros and cons of putting me through that again, noting that the outcome may not be worth the risk... Besides, there are several new next generation Myeloma targeted chemos that I haven't had the pleasure of ingesting or injecting yet... so I am comfortable knowing I have several Myeloma devouring options in my arsenal!
Happy New Year to all of you! I am so grateful for your friendship and support!
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
Helpful Myeloma Links
- American Cancer Society- Multiple Myeloma
- American Society of Hematology
- Ask Dr Durie
- Chemo Care- Drug definitions
- Health Monitor Magazine
- International Myeloma Foundation
- LLS- Myeloma
- MM resources
- Multiple Myeloma Research Foundation
- Myeloma Beacon
- Myeloma Blogs
- Myeloma Crowd
- Myeloma Symptoms
- Patient Power
- Support Groups
- Understanding Multiple Myeloma
My Story... How my MM was diagnosed
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!
My initial chemo regimen:
Pill form Chemo= Revlimid (10mg capsules)
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral
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?
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.
The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.