Saturday, May 30, 2020
Not the post I was going to post...
Just too much going on in my little world and the big world...
So in short, I had a really rough week from this week's chemo. Since I am on so many meds, I can never tell which is causing what.
Early on treatment mornings, I take Dex steroid pills (7 x 4mg = 28mg) before I leave for the chemo lab. Then at the chemo lab, I'm dosed up with more IV steroids @8mg for a total of 36mg. Interesting amount. For years I have done 40mg as 10 pills.
Next they give me 2 Tylenol pills, @ 650mg,
Pepcid @ 20mg via IV,
A slow drip bag of Sodium Chloride hydration drips through out the infusion,
And thennnnnn.... a lovely IV push of 50mg of Benadryl.
Many would not "enjoy" this medication ride as I do, but honestly, with everything I am going thru at home with my Alzheimer's hubby, sad to say... this is like a "spa escape" for me. The steroids quiet all the bone pain, headaches, and random body aches and pains, and gives me an amazing energy boost. Honestly, I just feel good all over. Sometimes a little buzzed, but all depends on how low my CBC levels are. Then when the Benadryl hits, I get all woozy and cruisy. You know that calm, serene feeling floating on a boat. Ah, just so lovely! How do you spell RELAX! Yep, it's just so warm and fuzzy and woozy without the boozy, lol. I know many would not agree with me, and absolutely do not like this feeling, but since I never did drugs or booze, I enjoy this medical relaxation. Groovy woozy :))
All these meds circulate and do their thing for about 40, 45 minutes, before they start the Elotuzumab-Emplicity IV. There are various drip speeds and time protocols, but I always ask my nurses to slo-mo everything, so I don't have a strong reaction. Plus, and you'll laugh at this, I just want to spend as much time relaxing there as I possibly can. How funny and how sad is that!
I only have a slight stuffy throat reaction to the Elotuz, but really nothing at all during the infusion. I then take Revlimid pills nightly for 21 days.
But then.......... like clockwork.. about 36 hours later, all the "good" side effects begin wearing off, and rather quickly, the YUCKY begins... and it's all down hill from there for a few days. This week because of the Memorial Day Holiday, my infusion was on Tuesday, so late on Wed the Yuck began and really revved up on Thursday and into Friday. I was extremely weak, fatigued, had lovely diarrhea off and on late Wed, into all day Thurs, and into Fri. Ugh... so exhausting. I was so fatigued and tired, I actually almost fell asleep on the pottie several times.
So way back in the day, when I was on Revlimid, I had crazy unpredictable diarrhea, well actually it became predictable. I have some pretty funny blog posts about it, mostly during 2013, 2014, 2015. So here we go again with that, and the fatigue. Oh the awful, exhausting fatigue from daily Revlimid.
And I am just trying to do so much, too much, each day, just maintaining our household, ranch, plants, animals, people, laundry, bills, cleaning, fixing, repairing, insurance, ordering supplies, being organizer, supervisor, navigator and "boss lady" to everyone and everything. Thursday, I just had to give up, and give in, as I could barely stay awake. And I was so dizzy too. I'm not a napper, but I eventually just collapsed on the couch.
This coming week I'm supposed to do the MRI "without and with" the scary Gadolinium contrast. Will I do it? Not sure. Am I worried about how myeloma is raging inside of me, Yes. Do I feel "weird things" in my head and body where the tumors, masses, lesions are... Yes. Do I want to Really Know What's Going On? Hmmmm, not sure. And I always wanted to know it all, always wanted to know all the details... but now... maybe "ignorance is bliss" in this case. Just too much on my plate right now. Wasn't supposed to be like this. We weren't both supposed to be so sick, and at the same time. Just such a tragedy. So much is a tragedy in this life. Didn't used to be so challenging. Why, body, why did you, are you sabotaging me so much. Sabotaging our lives. Lives we worked so hard for, so carefully. 10 and a half years is a long time to be battling cancer, ingesting chemo non stop. I'm amazed I'm as "well" as I am for all I've been through. Grateful yes. Exhausted yes. Answers coming up next blog that I probably don't want to hear, or deal with...
Thank you for reading and caring, and I hope your life is simpler, happier, and less challenging. But in the Big Picture of Things... in the Big Giant Picture of Things... I'm ok...
Wednesday, May 20, 2020
So much to share, and of course today is Crash Day from Monday's New Treatment Regimen, so I'm feeling new and different side effects, ugh... Also just as I was beginning this post, I received new (shocking) lab results from Monday's pre-infusion blood draw. Didn't know they were running my IGA, Beta2, along with the basic CBCs, etc, prior to my new treatment infusion, but glad they did as a baseline... Thank you for checking in and caring as you do!
Ok, here we go with the new treatment story:
Hello my new Myeloma killer- Elotuzumab!
Was on Revlimid 2010 before my July 2010 SCT,
Then low dose maintenance 2011, 2012
Took a break summer 2012 to summer 2013,
Then back on 2013, 2014, early 2015
Until I became "Refractory" to it, and switched
Sunday, May 10, 2020
(I'm, writing this several days before posting, so not sure I will even post these thoughts...
Ok I will, as no-filter is my middle name :)
I look outside my window and see such beauty
His roses, so loved and cared for, now "my" roses needing "my" care
So much upkeep to keep everything beautiful, alive, thriving, clean
I am just so depleted, so exhausted mentally and physically
I look outside and know I must continue on for the humans and animals that count on me, rely on me for Everything...
I know how much Myeloma (and Alzheimer's) has changed me now
I'm not the girl that started writing this blog in 2010
I dislike taking pain meds as I've always tried to work thru pain and I worry about the additional impact on my vital organs
But I've had to take Tylenol, Advil several times a day just to take the edge of the pain, just to do the minimum, of the maximum I want to do
Dex Steroids Save My Life! They relieve so much of all of this. Today I feel ok, finally, I don't hurt so much. Dex Steroids Save My Life on so many levels.
Remember... Myeloma Hates Steroids!
Long story short, he had gotten up all by himself, walked to the door a few feet away WITHOUT his cane or walker, and opened the door a little bit, setting off the alarm. Most of me wasn't happy, as I'm soooo very sleep deprived, part of me shocked at his mobility, a little bit of me was incredulous and happy for him. But the part of me that is sleep deprived, achy, tired, hurting, frustrated, etc, and a Cancer Patient that never really gets the "luxury" of "being a cancer patient"... reacted in a not so "adult manner". I let him out alone, and said sarcastically.... "ok, you woke me up early, scared the crap out of me, and here you are, with your brain telling you it's time to get outside and feed the horses, just like you used to".... "Great for you Jim, if only this was real..."but I'm not going out there at 7am!" "Gooo, just go if you want to, since your body is so ok today", good for you"... Happy #%&#! Mother's Day to me"! I sighed, cried, and started to video his precarious walk out to the horse corral. Not his fault, he can't help his brain-body sabotage either. I hate Alzheimer's more than I hate Myeloma...
Yes, bad me... but I'm sure y'all can understand my frustrated, overwhelmed, exhausted emotions.
So I filmed him as he slowly, actually somewhat solidly made it to the horse arena, where THANKFULLY our gardener (who I'd hired a few years ago to help with the early morning horse chores, was already out there with his helper), noticed Jim, and immediately went to him. I could tell how shocked he was! I knew he was looking for me or Jim's caregiver, but we were no where to be seen or found LOL. Eventually Antonio came to the porch and got Jim's walker, and Jim safely made it back to the house, thank you Tony! Me, still shocked, frustrated, happy, sad, a bit angry, so I had a meltdown with this in my face reality of all the challenges I must deal with daily, with my cancer situation, and Jim's Alzheimer's. Maybe I can upload a video from this insane brain event. No doubt, Jim keeps defying the Alzheimer's odds. I'm happy and so sad for him...
I have a BIG DECISION oncology appointment Tues, May 12, so I will let you know my current Myeloma lab status and what decisions my Dr and I come to regarding changing up my chemo regimen next week. Did I mention that last week I only did the 40mg Dex steroids and 400mg Cytoxan Cyclophosphamide. And Monday (today), I only did 40 mg Dex steroids, as my Dr wanted me to "clear my system" for the new regimen of Elotuzumab Emplicity and Pomalyst...
Oh boyyyyy, here we go.... Ughhhhh
Ok, I will update you on my next post, 5.20.20
Lots going on, chemo changes May 18, MRI coming, head skull neck pain from myeloma lesions, tumor, mass.... oy!
Thank you for reading and caring and posting hellos :)) Stay well and strong on all levels. It's a job, isn't it :))
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.