Monday, August 31, 2020
Friday, August 21, 2020
Been too sick to post and don't have much energy today for the stories I wanted to tell you. My "rescue dose" 2mg of Dex steroids I took before bed last night still gives me a bit of energy and lowers my fever and inflammation and pain, so I can do a mini post.
Monday, August 10, 2020
Hi Friends and loyal readers-
I almost wasn't going to post today, as my suffering has been OFF THE CHART for weeks, months. You know when your Nurse or Dr asks you your level of pain from 1-10 scale... well I tell them mine is near 1000!!! No joke. The suffering I have done since I tried Emplicity Elotuzumab, is insane!!! Well not to bash that chemo in any way, as I'm sure it's been a lifesaver for many, but just as I had an insane reaction to Zometa in 2018, whatever Emplicity does chemically, biologically, Wowzzaaa ooowwwzzzaaa, it sure did me in!!!!
So to recap...
Sadly, Cytoxan (400mg of pills weekly) with Velcade shots with Dex steroids (40mg weekly) stopped being effective for me in May 2020. So that's when my Dr wanted to try Elotuzumab Emplicity with Revlimid and Dex. I was not thrilled with changing, but agreed as my IGA was creeping into the mid 2000's.
Within a few weeks I noticed muscle, nerve aches and pains, but wrote it off to the new med changes in general, thought it would disappear as my body got used to it, and just suffered thru it. I remember shortly after beginning Elotuz, my Left thumb joint area suddenly swelling big, and becoming very very painful. Thought maybe I did something to it with all the ranch chores. Thought it was odd as the pain began to move and migrate up my Left arm, then into my L shoulder area, then into my collarbone, growing a HUGE tumor on my L clavicle and chest area instantly!!!!! When the size and pain was so crazy intense, never subsiding, that's when I told my Dr about it, commencing all the xray, MRI scans, as I've written about in previous posts.
Well... the rest is history, with all the unrelenting pain, pain medication adventures, etc. Then a week of Radiation, last week of July. Then recently... surprising low grade 24 7 fevers, with more intense pain on my Right side, then more xray scans, and finally today, first Velcade shot of going backwards (my choice, my request) in this new treatment regimen.
So since my last post, I developed a low grade fever. non stop, 24 7 for days and days and days and days, etc. Vacillated from 99 - 100.4 Can't tell you how absolutely AWFUL it's been. Fevers on top of excruciating pain... "Just Kill Me Now" I would sometimes say... but then quickly take my words back, as I'm not quite ready to let Myeloma win. But there were many desperate days and nights, I just didn't think I could take it anymore, and I still can't. Only reason I can post and type right now, is thanks to 40mg, (ten pills) of Dexamethasone Steriods this morning!!! Haven't had a Tylenol since this morning. Just typing hurts. I just can't get over how bone tumors and myeloma lesion pain, along with fevers, is just the most awful thing to live with...
So my new chemo regimen is the ole myeloma first line of treatment of Revlimid, Velcade, Dex. I skipped this regimen in 2010 as good ole Dex steroids and Revlimid alone brought my IGA down in a flash, prior to my SCT, and then I did lowest dose Rev maintenance for 18 months, and then resumed Revlimid again when out of Remission in 2013.
So we'll see how this goes, but honestly, even if my numbers stay the same, or even escalate a bit, or roller coaster, I'm NOT SWITCHING CHEMOS AGAIN ANYTIME SOON. THIS PAIN HAS DONE ME IN!!!
Oh, you probably want to know about the fevers? Yes they came on fast, but low after Radiation, rose from 99ish to 100ish daily. Yes good ole Tylenol brought it down, but I know that's just a band-aid on some sort of bigger issue. What the fever is, I don't know. Never went to Urgent Care about it,... you know why??? Because I didn't want chemo cancelled. If I don't do chemo, I die. Very simple concept for me. Yes I know I should have been checked. Yes I know it could be an underlying issue (infection?) that could be as serious as not doing chemo. Yes I know not treating is not always the smartest thing, but I watch and wait very very carefully, and if it had continued to rise to 101 let's say, I would have consulted. But again why? I won't go to a hospital because, #1 I don't want to die there, #2 my family wouldn't be allowed to visit me, #3 and what really can they do for me there, that can't be done at home???
I ask Jim's home health care nurses about the difference between Pallative and Hospice care. I could be eligible for both. Don't want to go there yet. But honestly friends these last few months have really really tested me. I haven't been able to be me, or function at all. Everything, and I mean everything became a super painful choice. Even with medication. Everything was just torture. I got so I couldn't change my T shirts, couldn't shower as I couldn't lift or turn my arms. Sleeping was was never refreshing. The pain woke me up, I couldn't sleep in any other position but semi upright, with many pillows propping me up. Not fun. If I turned by mistake, yikes the searing pain startled me awake, not to mention, fearing fracturing my clavicle collarbone or ribs more.
I didn't go outside, as nothing was fun anymore, as everything caused me pain. Yes, I tried Norco, Percocet, different muscle relaxers, steroids, different strengths of Tylenol. And now I have more clarity as to why i have all this PAIN!!.... I found out from my xray scan yesterday... I HAVE MORE FRKN FRACTURES IN MY RIGHT SIDE CLAVICLE COLLARBONE SHOULDER!, in addition to the LEFT SIDE I JUST HAD RADIATED, ALONG WITH MYELOMA LESIONS EVERYWHERE THEY XRAY. YEP, ALL THIS PAIN IS REAL, and that's why I've been in so much PAIN. Get this description of my fracture type! Unreal!
Fractures of several types, Comminuted fracture, lesions, holes, masses, demineralized bones, clivus eaten up, etc etc. It's no wonder I haven't had more pain over the years with myeloma eating me up like termites to wood!!! Just Google some of the specific wording in the reports. Blew me away!
"A comminuted fracture is a break or splinter of the bone into more than two fragments. Since considerable force and energy is required to fragment bone, fractures of this degree occur after high-impact trauma such as in vehicular accidents."
Paravertebral extension usually occurs with aggressive, malignant lesions, but it may also be encountered in benign lesions in the presence of a pathologic fracture. Certain expansile lesions tend to occur in a specific region of the vertebral column. This may be an important clue to the diagnosis.
WHAAAAT??!!! JUST CAN'T MAKE THIS STUFF UP!!! HELLO PAIN... I UNDERSTAND NOW. ... BUT I HAVEN'T BEEN IN A VEHICULAR ACCIDENT... YESSSS MYELOMA YOU ARE MY HIGH IMPACT TRAUMA!!!
Hello Lytic Lesions, you've been Radiated already!!!
Ok Friends, I'll just leave it here... my myeloma journey just keeps getting more interesting and challenging daily... just can't make this stuff up. You Myeloma can just stop now, and give me my life back. I don't ask for much. Just pain free, with the ability to just move around slowly, and do what I want when I want, without feeling like a zombie all the time, because I hurt so much, and feel feverish and sick all the time. Oh how I took my early years with Myeloma too smugly.. how Myeloma was raging in the background, but the chemos I was on suppressed everything better than it does now. Well it was eating me up, but for some reason, the pain from all the lesions just wasn't as intense until Zometa in 2018 and now Elotuzumab, May, June 2019... but I will fight until I can't...
May your summer be full of fresh air, warm summer nights, with the moon and stars shinning brightly on you, surrounded by those you love and care about.
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.