Monday, October 28, 2013
Paired with your friends Revlimid? Velcade? Cytoxan? and all those other cancer chomping chemos...
Ugghh... here we go again...
Hey body that has failed me ---> I'm not looking forward to feeling yucky again!
I played being well for about 9 or so months while in remission and chemo free, until reality hit me again too soon.
Everyone says I am soo strong for handling this crazy cancer situation as I have
Honesty, I really am not that brave...
I just do what I have to do, to gain additional years on my ever so shortened clock!
And so I am sick AGAIN!!!
Dang this awful IMMUNE SYSTEM CANCER
Have had the delightful intestinal virus (lower GI) with a fever over 102 for days
Been off work for a week slowly recovering my strength, trying to reintroduce food, but we are not best friends right now (not that we ever were anyway)!
I was really sick in August too
Now really sick again in October
Can't I get a break??
Body betrayal status here!
I feel I am going downhill fast... and not on a horse or in my cute VW bug... but downhill on the cancer is winning again slide...
Just not fair to just SEE my horses out my window, although they're happy just hanging out... and I think about my cute lil Bug in the driveway, just sitting there... such ironic torture I can't go out and play as I seem to be always too weak or too tired to do much of anything anymore.
Yes I know... I am very blessed to even have them in my yard to be able to see!!!
Not to worry, I am very grateful for everything in my life (minus cancer!), I'm just a little pissed off right now and little beyond frustrated!!! ggggrrrrrr
And so, I've had to postpone taking my new crazy Dex steroids as the first leg of my Deja Vu pommel myeloma back into remission treatment plan... that's ok, I wasn't looking forward to that anyway!
But I will behave, and begin the cycle in a week when my body is stronger.
Uugghhh, can't a girl get a break!
What is all this really about?
I just don't get it!!!!!!!!!!!
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
Thursday, October 10, 2013
Miss Baby Blue arrives a day earlier than expected!!!
And perhaps Miss BabyBlue replica inadvertently has helped me solve the
"Why did I get Myeloma" riddle:
Friday, October 4, 2013
Because this Blog is Bubbling over in silly B-Babble :)
B is also for Blood cancer Biopsy results Below
B is for a cute Bucket list Buy I spied
B is for my new 1974 Baby Blue Bug
B is for this Blast to the past Beetle I Bought in a flash
B is for this Bug Being Brought to me
Blasting from West Palm Beach to me
B is for Bursting with nostalgic excitement
But C is for Cancer that's now suddenly Back
But this Bewitching Bug cheered and distracted me, as
Bummer Biopsy news confirmed
Boo-hoo, Blasted cancer is Back
for her trek from Florida to California
until we meet for the first time next week!
~ ~ ~ ~ ~ ~ ~
to the main reason you came to read this blog:
AND TREATMENT PLANNING:
Below are my medical numerical details, which summarize my blood work and biopsy stats from diagnosis Dec 2009, to my current Aug/Sept 2013 Out of Remission stats. So dang it, after all my 2010 chemo, powerful crazymaking steroids, July 2010 high dose chemo, autologous stem cell harvest and transplant, and year and half maintenance chemo, all which gave me remission!!! ... Myeloma decided to escalate and end my remission party :(
I've had 4
Biopsy #1: Dec 2009 = 67% cancer, at shocking diagnosis
Biopsy #2: June 2010 = 10% cancer, after 6 months intensive Revlimid, Dex Steroids, Cytoxan chemo
Biopsy #3: Aug 2010 = 0% cancer, after hospitalization, high dose Melphalan chemo and auto stem cell transplant
Biopsy #4: Sept 2013 = 15% cancer, after being off maintenance Revlimid chemo for only a year :(
I am IGA Myeloma, so one of the important Myeloma cancer markers is my Immunoglobulins:
Normal range (measured by Kaiser/City of Hope) blood tests = 70 - 400mg/dL
Dec 2009 = 5600+mg/dL (wow! I was sure a sickie, and didn't know it!)
Aug 2010 - Oct 2012 = very low, sub normal #s as my immune systems battles back after transplant
Dec 2012 - Apr 2013 = FINALLY in the NORMAL range!!! (but sure short-lived!)
June 2013 = spiked out of normal range, but no panic yet
Aug 2013 = spiked more, officially determined to be out of remission
Sept 2013 = edging close to 1400, which is over 3 times the high end of normal
Another important Myeloma marker is the M-protein, or M-spike via Protein Electrophoresis:
Diagnosis: Dec 2009 = 4.30gm/dL
During remission: Aug 2010 - early 2013, not detected at all!!
Official M-spike comes back: July 2013
Rising monthly: Sept 2013 = .96gm/dL
|Such pretty cells for such a deadly cancer|
1- I am not a happy cancer camper
2- I am so shocked Myeloma came back so soon
3- I am a very happy babyblue bug owner :)
4- I am very grateful to have had all the fantastic medical treatments I have had, that saved my life!!
5- I wrongly assumed I would have remission status for years and years and years and years and years and years...
6- I am extremely grateful to still be here and have the amazing life I have, even though my energy and ability to be "me" is a fraction of what it used to be
7- I will be back in treatment, back on chemo most likely this, or next month
8- I am still partially dominating Myeloma, as fortunately my Doctors never stopped monitoring me closely, and my Out of Remission status was identified FAST!
9- Even though the cancer has come roaring back, and much quicker than we anticipated, at least it was caught this time, in a still treatable stage!
10- I am grateful for so many and so much, that is still so good in my life
11- If you love me, don't share your germs and cooties with me! No hand-shaking, no kissing; "air hugs" only please! Myeloma is a cancer of the immune system, which means... duh... I'm "immune compromised", and can get sick easily, and haven't been well since mid-August
12- Looks like I will be in treatment for life, and on some sort of chemo forever
13- Lucky (unlucky) #13... just MY luck, Myeloma is an incurable cancer...
And finally, you may be wondering, what is my "sudden" interest and excitement in an old 1974 VW Beetle?
It's a fun bucket list blast to my past, as my first car was a 1972 twin of this one. I always thought it would be super groovy to find a replica of my beloved baby blue bug, and so when I found out I was fully out of remission, and the cancer was back with a vengeance... that truly was a huge wake up call to me.
That "NOW" is of the essence, and I should no longer put things off.. my previously thinking= I still had all the time in the world!! Ha! My new motto: Think it... Do it... Now! Well... I'll try to...
Next blog, I'll post a picture of me with my BabyBlue, driving to chemo treatments!! ahaha.....
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
- Cancer Therapy Advisor - MM
- Chemo Care- Drug definitions
- Dexamethasone Steroids
- Health Monitor Magazine
- International Myeloma Foundation
- LLS- Myeloma
- MM resources
- Multiple Myeloma Research Foundation
- Myeloma Beacon
- Myeloma Blogs
- Myeloma Central
- 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, 15mg 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.