Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Tuesday, March 9, 2021

Choices, Choices, Studies, Studies... Please Stop Mutating Myeloma!

3.11.21 (but written on 3.9.21) as I will be crashing bad on 3.11.21...

And I found this the other day... 

ME!!!!!



So here's the UPDATE I would be posting on 3.11.2021:

1- Darzalex IV Monday March 8. I now have a weird reax to IV Benadryl where I get "Restless Leg Syndrome" with the IV Benadryl push. So sad about that, as the Steroid up and the Benadryl mush mouth, tired and relaxed without choice, previous reax, was so "fun"!! Was such an out of body reax with my brain on, but outside my body, and my slow-mo talking. You would all laugh hysterically seeing me like that! Now it's annoying with feeling tired and relaxed mentally, but my body wants to be in motion lol. Maybe if my CBC's rise, I can enjoy the previous bipolar ridiculousness! 

2- Dr appt/planning/discussion and Velcade Injection today, Tuesday March 9.

3- Both days, with 20mg Dex Steroids and Pomalyst.

4- Discussed both Blenrep and Melflufen or stay the course with Darzalex, Velcade, Pomalyst, Dex steroids. I do feel my awful Abdominal Alien Mass may have shrunk a tiny bit. Is that from Radiation or Chemo, or the fact that I've lost 10 pounds from not being able to eat because it's so big and taking up so much room. I hardly have an appetite, and when I do try eating, I can only do a few bites before I am full or it begins to taste yucky. All the food I have here, and see on TV still looks totally delish, but Alien says NO! ... Dang thing, I wish it could be just suctioned out. Today I had my Nurse stab it with the Velcade shot. LOL not really, but I did do the Velcade injection on my Right side LOL. Wish it would just disintegrate and I could pee or poop it out LOL. You ask why I can't have Surgery on it... first of all Drs have said it's too "dangerous" because of where it's located (Abdominal near Kidney, Liver, Adrenal), and the Mass would just grow back, as the Myeloma is everywhere and just keeps recreating itself. Same with the Lung Mass, Skull mass, etc, not to mention all the bone fractures, breaks, lesions, plasmacytomas, etc. Myeloma just loves me and wants to make it's presence known everywhere, 24 7. Ugh, where did it come from, I will always wonder...  Whyyyyy meeeee???? 

Well time to try some tea, drink a bit of it, hate the taste, throw it away and try another. Not to mention see if what I ate earlier, agrees with Alien... doggies sure get a lot of left-over treats now lol.

Thanks for reading and caring as you do, and offering medication suggestions and heartfelt comments as you do. Means so much to me :))  x0x0


Posted by

10 comments:

  1. MattMarch 10, 2021

    hi Julie, I'm thinking of you. thanks for the update. And I also get the restless leg...just in my left leg during my infusion. It ruins my nap and loopy time.

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    1. JulieMarch 22, 2021

      Ah, thank you Buddy. Yes, I'm trying to figure out which med is doing this to me in addition to Benadryl. Sometimes I get it from Omeprazole. I take more stuff now than ever, and never did all this back in 2016, 2017 with Darza. It's probably all the meds together. And omg, what I've gone thru with side effects in the several weeks, I thought this was "it". This Extramedullary is vicious.
      Hoping you and Leslie are doing good, feeling well, and able to enjoy some "normalcy" xoxo Julie

      Delete
  2. UnknownMarch 13, 2021

    Julie,

    I was diagnosed with Myeloma last August and my treatments were Darzalex, Velcade, Dexamethasone and Revlimid. I quite often got "Restless Leg Syndrome" when I was getting the Benadryl and steroid premed, so I can relate to that uncomfortable feeling of needing to move and just wanting that sleepy, calm feeling for a bit. I went through 6 cycles and this last week went through the stem cell harvest for my transplant which I go in for on the 23rd. It was a horrible week and they didn't even collect what they were hoping for (as you know they like to collect for multiple transplants). The jug cath was the worst for me and I think I have PTSD from worrying something was happening with it as anytime my neck still hurts (I had it pulled yesterday pm) I quick grab my neck like I've been shot. I look forward to hopefully, in the next few days, feeling more like myself again (or as myself as I've been able to feel since starting treatment), and having my platelets go above 40 so I can run with scissors again :) Thank you for sharing your story with us all and I wish you luck with all you're going through and know my thoughts are with you.

    -My

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    1. JulieMarch 22, 2021

      Hi My, thank you reading and sharing your story. Yes, I remember all that from my July 2010 SCT. Sorry you are reading all this at 11 years. I had some very very good years after my SCT, and I'm sure you will too!
      Just take the "Maintenance" and never let Myeloma get ahead of you. Julie

      Delete
  3. AnonymousMarch 20, 2021

    Good to hear that Blenrep as well as Melflufen can attack those extramedullary tumors. Maybe with less myeloma your bone marrow will be able to produce more regular blood cells and stabilize your counts? I certainly hope so. Such a giant leap in the dark to take these new drugs, but then again, most of the drugs we are taking are only a couple of years out from trials. At least the side effects of Blenrep and Melflufen are known and the doctors know what's best to prescibe for your situation and what side effects to monitor. It sounds like you have a good medical team too. Thinking of you.
    Ruth

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    1. JulieMarch 22, 2021

      Thank you for checking in Ruth. Yes it's amazing what us cancer patients put in to our bodies, all these powerful chemicals, and we survive! I do a lot of ready the research when I feel well, and let my Drs know how I feel about taking chances, avoiding High doses, etc. I asked to start at the lower dose of Blenrep, so we'll see. I just want to know what side effect train is coming my way. Just hate being a sickie. Thank you for all your support and comments :)) Julie

      Delete
  4. VinceMarch 21, 2021

    Julie, I appreciate your very candid description of what you really feel and not sugar-coat your MM journey when your acceptable options are limited. You bring lot of humor out in painful situations, as well. The discussions about your reasoning behind Blenrap / Etc is very useful as many of would be facing such decisions. Please keep up your helpful blog.

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    1. JulieMarch 22, 2021

      Hi Vince, thank you for finding my Blog and for your appreciation of my honest rants. Not everyone wants the "real guts". I do feel bad for the newly Dx that finds my Blog, as they most likely will have many months, hopefully years, of postive treatment success. But yes I can only be honest and tell my story as it is. And yes I will do the lowest dose of Blenrep to start and see what side effects is causes, but NO WAY will I do eye complications if that happens. I barely have a "life", but I do have my Independence :) Hope your journey is going well, if you are a myeloma warrior too. Julie

      Delete
  5. Dallas, TXMarch 22, 2021

    Hello Julie,
    I too wanted to thank you for your honesty with this disease. I have it for the past 4 yrs and have gone through all(almost all)the meds you describe. I have refused some--the Blenrep for the eye issues. I don't see the point of living a few more months with no eyesight as I am an avid reader. My doctor laughed but I did not take the drug. I also turned down a Phase 1 trial after reading the sponsor's (aka drug co.)requirements. I would be spending all my time as a human guinea pig without any guarantees and this would basically go on for the rest of my life or the side effects which they don't know yet what they are caused me to quit. I was chewed out by the onc research dr for refusing the trial and wanting to spend what time I have feeling as good as I can enjoying the company of friends and family. There is no cure in this disease as you know. We are just buying a few more months that may or may not be 'quality'. Everyone has their priorities and must make their own choice. I choose quality over unknown quantity. I really respect you and hope you will keep your column going. It is the ONLY one I have found that tells the truth of the disease treatments. Most columns try to make myeloma sound like an outing with Mary Poppins and pity for those people who DON'T have myeloma. You are a good person and please stop beating yourself up for stopping treatment and giving time to your beloved husband. In the end we will all be judged on how we loved one another. You loved very well.
    God bless you. Keep writing if you can and if it doesn't insult you I am praying for you.

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    1. JulieMarch 22, 2021

      Hi Dallas, Tx- thank you for Your comments above that (lol) come out of my mouth everytime I have discussions with my Drs and Nurses. They seem (especially the Drs) to believe that strong treatments and Clinical Trails are the answers. I ranted about this in prior posts, so thank you for the good laugh, and understanding perspective we agree on. More is not More in this case...
      I could write at length in response your post, and I so appreciate your honesty too! I have gone on and on with my Drs re NO WAY do I want any chance of "serious" eye issues, and my adult kids laugh and agree too. What's the point of affecting the Myeloma, if we then can barely see, etc. I too love to read, and also not being able to see what is left of my life, would be stupid and devastating, Not to Mention losing Independence. No Way!
      Whenever I am offered Clinical Trials, well... I let everyone know I will, at this time only do FDA approved meds. I have great respect for those who do them for us, but No thank you, and I will not be a Lab Rat or Guinea Pig, or Placebo. I tell everyone that asks why, more or less what You said above. I do not want to lose even more control of what goes in my body, as it's bad enough putting in all the chemicals we do, and then waiting for the Fireworks to go off LOL.
      Surviving 11+ years is pretty remarkable for MM, and 4 for you, and perhaps our "Methodolgy" works. And YES, quality over quanity... altho I am pissed I won't have the years I thouht I would :((
      By the way, my husband passed last year, and thankfully that was before this Awefulness set in . I still "blame" Elotuzubab for picking this awful additional war within me, with my IGA type myeloma. All the other varieties of MM may just do fine with it, but I truly believe it triggered the Extramedually invasion...
      Ok, thank you very much for your reply Dallas, Tx! I appreciate everyone that comments.
      PS- I am still waiting for the glow in the dark Rainbow Unicorns to visit me ;)) Julie

      Delete

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My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

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!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
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?

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?”)

Infections

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.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.