Friday, September 19, 2014
Thank you, Thank you for saving my life by pummeling Myeloma.
But at the same time Revlimid, you are ruining what's left of my ruined life!
I am a house-bound, bathroom prisoner more than ever now...
I've discovered it's YOU Revlimid!
YOU are the cause of my "chew and poo" lifestyle!
I've tried to eliminate (ha! no-pun/pun intended!) so much from my daily ingestion to figure out why I have spontaneous volcanic GI issues.
I try to eat well, then it alllllllll goes through me.
I'll even "starve" myself, just so I can leave the house.
I eat light, healthy, bland, and that too goes through me.
I think I'm fine, then suddenly...cramps! and I am not fine at all.
If anyone is looking for me in the house, they know where to find me... and it's not out riding a horse!
Whatever I do regarding eating, I've finally discovered it's YOU my life saving Revlimid- you are the cause of awful, unpredictable, volcanic GI distress!
You are my nemesis, yet my best friend and ally. Ugh!
Recently, as an experiment, I stopped taking Dexamethasone, Acylovir, Mepron, etc, thinking it was one of those meds aggravating my GI system... as I really didn't think it was you Revlimid that was causing my intestinal distress. But nothing changed! The crazy volcanic reactions continued...
Seriously, I've read online about everything Myeloma since 12/30/2009... and just now stumbled upon this incredibly relevant ah-ha moment video: #AskDrDurie: How can Revlimid’s diarrhea side effect be handled?
How had I missed this?! Dang you life-saving Revlimid! It's YOU! Now I know who's the "chew and poo" culprit!
I've heard other MM patients talk about their diarrhea issues, but it just didn't sink in that it was you Revlimid causing me all this distress. I did fine on 10mg of Rev during initial treatment early 2010. But thinking back... that must have been because I was so corked up from 40mg of (4-days on) Dex!!! I had quite a time with GI reactions when hospitalized at City of Hope, but that was from all the high-dose Melphalan and the entire stem cell transplant process and neutropenic crash. (And I think they had me on Lomotil.)
So it must be that over time, my GI has begun to rebell. I "forget" that I have been back in full time treatment for a year.. and my GI system is so much different now and dang it, so much more sensitive! Not to mention, it's over 4 1/2 years I've been in (almost) continuous treatment!
And so, I must accept that "chew and poo" is here to stay and start trying out everyone's anti-diarrhea recommendations and medications. I've been so reluctant to add another chemical or prescription to my system, but I give up... it's a quality of life issue now!
Fellow MM-er's, please let me know what works best for you and possible side effects of each! I am not very brave at trying new meds anymore!
So now I know it's YOU Revlimid that causes unpredictable, volcanic diarrhea! But I still love you Revlimid since you brought me back from death's doorstep in 2010 and you continue to stomp and chomp myeloma outta my cancerous system!
Watch this video! Thank you Dr Durie and the IMF for this huge ah-ha insight for me!
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
Monday, September 1, 2014
Thank you for your concern when I only update once a month. I don't want this blog to bore you with too many insignificant updates, so I've focused on "less is more", posting my relevant monthly cancer stats along with some interesting personal life tidbits. Trust me :) I could post daily, weekly for sure, as so much happens in my life!
|My sweet hubby Jim brought these to help me feel better!|
Not sure why August was worse than some other months? I keep thinking about how I tolerated huge doses of Dexamethasone steroids during my initial treatment in early 2010. For 6 months I took 40mg Dex DAILY, 4 days on, 4 days off continuously!!! My dosage of Revlimid was the same too, 10mg daily, 21 days on, 7 days off. For sure I had all kinds of crazy side effects back then, but not the extreme "volcanic (lower) GI eruptions" I have now! My oncologists have confirmed that my entire physiology is changed, and my GI system is definitely different since my stem cell transplant.
As I reflect back and connect the dots, I realize how differently my treatment affects me now, since Myeloma came roaring back last year.
So with my new "chew and poo" lifestyle, I have become rather "home bound". Haven't been to my college office in weeks. I was very sad to miss my 32nd/29th "Fall Opening Day". Thank goodness I can still help students online. I think about how fortunate I am under these circumstances, as Jim has created such natural beauty in our backyard, and I am never without amusement and entertainment here. From all the animal residents and my human family's shenanigans, there is never a dull moment! Click here for the "Triplets", baby sparrows update!
But however beautiful and entertaining my home is, I did suffer physiologically quite a lot this month. And basically every month from my meds, or perhaps it's side effects from IGA myeloma itself? Most of my current life is centered around trying to eat to get proper nutrients in my system to fight stupid cancer, and then wondering if it will "stick". Most of the time, no...
|I like the combo versions the best! Mixed veggies and fruits|
Here's my most recent statistics:
WBC's = 2.8 (4.0-11 scale) too low, thus very susceptible to everyone's cooties
ANC (Absolute Neutrophils Count) = 1.3 (1.8-7.7 x 1000/mcL) eekk! too low
M-Protein/M-Spike= 0.70 (normal = 0.0) too high
Beta Globulin Electrophoresis= 1.27 (0.65-1.10 scale) high
Gamma Globulin Electrophoresis= 0.35 (0.70-1.60 scale) low
Protein Electrophoresis= (always) Abnormal
IGA= 979 (70-400 scale) down a speck (I'm "high risk" IgA Myeloma)
IGG= 279 (700-1600 scale) too low
IGM= 17 (40-230 scale) low
And so I carry on. One day at a time, monthly blood work to monthly results. I've felt a bit better the last few days, as I'm on a little medication break. The war starts up again on Wednesday with Rev, and will slam me more after I take my Dex. But if these powerful chemicals are significantly punching Myeloma in the cellular gut, as I get kicked in the GI gut, I'll never quit!
|Such a spectacular sunset, last day of August|
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
Some interesting reading:
I should have stayed on Revlimid maintenance!
Cancer Cases Among 9/11 Early Responders Continue to Grow
Remembering Arnold Goodman- The myeloma community has lost a courageous and inspiring soul
Remembering Stephen Kramer- Another valued voice of the myeloma community has been lost.
Goldman Sachs Former Lead Director Dies of Multiple Myeloma
(MMRF) Saddened by Loss of Dear Friend and Board Member Edward Jay Phillips
Who knew these famous people died from Myeloma!
Multiple myeloma is incurable
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.