Wednesday, September 30, 2020
Sunday, September 20, 2020
Just a brief post as I'm completely beat up due to my husband's complicated and declining health situation....
Fortunately, I'm slowly feeling stronger and with less pain. Fevers gone for about 2 weeks now! My L side Clavicle lesion(s), fracture(s), tumor, etc is not as painful since Radiation in July, altho the crazy spontaneous tumor that suddenly grew out of no where, on the end of my L collarbone, is still there, and kinda clunking into my throat. So weird.
My R side Clavicle lesion and fracture is less painful also, along with the pain in my head and neck from all the bone disintegration and the R side skull mass, which caused unbearable headaches back at the end of 2019 and beginning of 2020 . If you remember my pain crisis posts in June, July, Aug, where the PAIN was off the charts, I have fortunately slowly moved past that, and can move my arms above my head, and do many body movements and finally dressing myself, showering, driving, etc, as couldn't do for weeks and weeks. Again, I really believe I had a severe reaction to Elotuzumab/Emplicity, and that particular immunotherapy/chemo/treatment caused extreme nerve and muscular pain, and grew tumors like weeds, awakened lesions and fractures, and generally wreaked havoc on my body for several months. Again, only other time I experienced something similar, was in 2018 with a severe, very similar reaction to Zometa.
I continue to do 40mg Dex steroids, with Velcade and 21 days of Revlimid. Just like back in the day when I was on Revlimid, this treatment is causing me to "live" in the bathroom about 2 hours after I eat. It's so dang predictable, it's funny. I don't mind a good daily GI cleanse, but basically everything I eat goes thru me. I don't get much done, as I spend so much time in the bathroom lol. Just took Imodium, as I've cleansed enough for one day, and I'm "pooped out" and so tired LOL... If it wasn't for steroids, I'd probably look anorexic. Mondays are my treatment days, and my main eating day, but that sure "backfired" last Monday, when I ate a lot of Tri Tip, trying to boost my Reds, Platelets, Hemoglobin, etc. Ugh, was cleansing for hours and hours the next day, and actually felt sick, but that was also due to the "normal weekly crash".
Lab results today were low, low, low, and I'm really surprised, as I feel stronger and better. Thought they'd be closer to the the low end of normal, rather than the low low low they are... I also posted my Myeloma status results on 9/13, so don't miss that crazy results post. Tragically my husband Jim continues to slip away, and is basically non verbal, has forgotten how to walk, stand, etc and just this week, has lost interest in food and drink. Occasionally, one of us can get some hydration in him. He's basically in the hospital bed 24 7 now. After chemo tomorrow, I will meet with his home health care team and discuss moving from Palliative care to Hospice. I just cannot believe this is our life. I can write about all this awfulness as I do, as it is so completely unreal and out of body to me. I just keep thinking I'll wake up to a new day, and we will be who we used to be... what-to-expect-in-the-late-stages-of-alzheimers-disease
Right side lesion and lung mass
Sunday, September 13, 2020
Decided to start a new post with screenshots of my recent labs (rather then add to my 9.10.20 post), and what better day than the 13th to do so.
Thursday, September 10, 2020
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.