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

Monday, March 1, 2021

2 New Options: Blenrep and Melflufen

 3.1.21

Hello Friends, 

All's the same... extreme fatigue and exhaustion thank you to very very very low CBCs, Platelets, Hemo, Reds, Whites, etc. I am so sick of feeling sick all the time. So tired of being tired all the time. Over the years, I had the flu and colds just like everyone else, but recovered like everyone else, and life went on. With Myeloma side effects, I can barely move and do anything now. Everything is challenge. Not a ton of pain, but it's there. But the weakness, fear of falling, I can barely get in and out of bed, the car, chairs, etc, and the inability to do much of anything is startling for me. It's just all totally disabling and I can't wrap my head around it. Never watched so much TV in my whole like. Never had to "force" myself to eat and drink. I am sick of hydrating. Sick of trying to eat the "right" things. I could live on the pre-boxed protein drinks, if that was healthy. But it's not. A while ago I weighed 131 when doing the High Dose Dex Steroids. Now I'm 121. That's fine with me, but I also know "what it means"...

So the regimen of Darzalex, Pomalyst, Velcade, Dex Steroids is a big joke to Myeloma. I'm "refractory" to all of them most likely. Oh well. I'm tired of blood tests, and needles sticking me. Never bothered me before, but now my skin is so sensitive, I tense and bristle up when the needle goes in. Never had this issue before. And the nose bleeds. Weird clots come out when I blow my nose. Oh well.... And the Extramedullary Lung and Abdominal Masses... who knows how big they are now. I care, don't care anymore. I get mad at myself when I mumble and bumble around the house and say I don't care anymore, I'm done, I can't take this anymore, and just want to feel what it's like with NO meds in me. But truth is, I do care. I care a lot. I want to live. But it's just so hard now. All I do is whatever I have to do to treat Myeloma and then deal with the side effects. Nothing tastes good. I try to eat, but it's not fun, nor tastes good any more. I try to drink, but I throw more tea and juices away, then I drink. And I used to love my herb teas and Cranberry sparking water mix. Can't stand plain water any more. Force myself... I haven't had coffee in weeks. Doesn't tase good at all anymore. I watch the Food channels and laugh at all the incredible concoctions. Onions, Garlic, Fried, Jalapenos, Carnival Burgers to Elegant dishes. I'll never be able to eat any of that any more... LOL, not that I ate it before, but for sure now, I will never be able to. 

Fun Show!


Will never celebrate with Jim and others again
He loved a good steak, I was never a regular meat eater
But we had a lot fun times at lovely restaurants... 

So Steroids and Darzalex today. The Benadryl is still affecting me with woozy brain mush, which is ok, cuz feeling mellow is ok with me. But I've developed "Restless Leg Syndrome" from the IV Benadryl. Weird. But my amazing Nurses reassure me that it is a known side effect. Hope to get back to the woozy effects, rather than stomping around trying to get rid of the "leg fizzies". Super tired and weak, but I am always careful, but I do worry about the Little Doggies getting under my feet and tripping me... I am very careful, don't worry about that! Use a cane most all the time now. They're Jim's canes. So funny. I had bought him several with very nice decorative patterns on them, NOT knowing I would eventually be the one using them LOL.

Tomorrow, Velcade and possible Platelet transfusion. Dr wants me to go for blood tests after injection. Don't feel like driving to another facility. Don't feel like doing anything. Would love to stop everything and see what happens, then if not good LOL, go back on some do me good chemo... would love to just sleep and sleep and sleep, then wake up refreshed, go outside and realize it's all been a crazy dream,,, ha ha...

Did my Ophthmology appt last week, and my eyes are good, and ready to be destroyed by Blenrep. 

Ironically a blog follower mentioned "melphalan flufenamide (Pepaxto; melflufen)"  .  I had read about it previously too. It was just approved yesterday, Feb 28,2021! The most amazing thing I read, and couldn't believe my eyes, was good results with EXTRAMEDULLARY Myeloma:

 "Notably, the combination also showed activity in a subset of patients who had extramedullary disease (EMD; 41%). "
Thank goodness for the BRAVE people that do these Trials!!!


Well isn't this an amazing twist... will ask my Dr about Blenrep vs Melflufen!!

And in my recent Labs, Steroids have brought my A1C to a little over 6. But that could also be that I am not eating well, and eat more bread type things now to settle my stomach. I'm too Neutropenic for fresh fruits and veggies. But honestly, I eat whatever I want. Does it REALLY matter at this point... care, don't care... but I really do care... I think I'll try some Hot Chocolate now... sugar, sugar... who cares... 

LOL hadn't read this before just finding it to post!
I eat almost all the banished foods here LOL


Thanks for reading, caring and following my story. Sorry for being so sad and pesimistic now, compared to the upbeat, joking, positive, it will all be ok Julie, through out most of this blog since 2010...


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5 comments:

  1. CBMarch 02, 2021

    Hi Julie, Please do not ever apologize for being honest in your writings. I have kept up with all your blogs since you started and have appreciated how you have told your story, all the good and all the challenging, as you lived it out. It would not be as transparent if you only wrote what you thought people wanted to hear. While I do not have myeloma, I have gone through cancer and you became my hero through your writings. Your honesty helps us know how to pray, if that is something that is part of our life, send encouraging thoughts, and help people who are going through what you are. You will be an encouragement to some as long as you have breath and you have shown what an amazing woman you are in all of this. Thank you for continuing to find the strength to do this when life seems to be such a struggle each and every day. Sending lots of prayers, hugs, and love. CB

    ReplyDelete
    Replies
    1. JulieMarch 09, 2021

      Awww CB, you made my day when I first read this, and again today rereading. Thank you so much for understanding my writings and letting me know you appreciate how I write from the heart and core of who I am. Like you, it helps me so much when I read "real" posts from others too. Please know this post means the world to me CB and I love every word you wrote! I hope you are doing well, your family is doing well, and again, you are such a bright star in my life. If only we could get together one day. Maybe... :)) xoxoxo Thank you xoxo

      Delete
  2. AnonymousMarch 05, 2021

    Dear Julie, what a horrible time you're having. When myeloma is uncontrolled it's devastating, so we don't really get much choice about giving up treatment, do we? (Though at least you're living in a state that allows a final choice to be made - a choice to get off the run away myeloma train just before it crashes). You sound as if you still have options however. Great that Melflufen can be very effective against extramedullary disease! I read that Melflufen, like all myeloma treatments, works better in combination. Did you do well with Velcade in the past? It doesn't seem to affect blood counts as badly as the imids or give so many GI problems. Combined with Dex of course too. I also have read that the eye problems with Blenrep can be "managed", and people can stay on treatment even if they develop issues. (Though side effects all seem to be downplayed in the literature - quite another thing if you're the one who's living with them!) You still have some potential treatments to explore Julie - hope you can find the right one to drive that myeloma back down! Ruth

    ReplyDelete
  3. JulieMarch 09, 2021

    Hi Ruth, thank you so much for all your encouragement and information. Sounds like you do a lot of reading like I do, and I sure appreciate you passing along what you have discovered. I had an appt with my Dr today, and she likes the study results of Blenrep better than Melflufen, but would honor whichever I chose. She is worried how much the Melflufen would bring down my already low low low CBCs... I will submit the REMS paperwork for the Blenrep and asked for a lower dose to begin with, as I truly believe "less is more" in the beginning, until we know what works. You're so sweet to continue to follow my journey and be my "friend". Thank you for all your very relevant comments :)) Hoping you are doing well, and don't have all the ridiculous DRAMA I have. Thank you Ruth xoxo

    ReplyDelete
  4. Pedro Taylor ✅September 01, 2021

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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.