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

Saturday, March 25, 2017

Thanks Darza- 4 days later... I still feel Yucky, and You're Sabotaging my Party

3.25.17

Dear Darzalex,

Thank you for improving my myeloma status, and pummeling those invasive no-good cells, but what's going on here?! Each day since Infusion-Day-Tuesday, I have felt yuckier and yuckier... I feel "flu-ish", achy, so extremely fatigued, tired, headachy, dizzy, blurry and so incredibly ouchy, without relief or a break. I thought Velcade was "the" culprit, and kicked that treatment outta my life last week.

But Darza, perhaps Velcade is only partially responsible for my "misery", maybe exacerbating your side effects? Maybe the ouchy nerve pain is really you Darza, afterall? Maybe you are the cause of all these yucky side effects? Guess I underestimated your powers. I don't have the extreme debilitating, burning nerve pain from earlier in the month, but these current super ouchy-achy-flu-like symptoms are just doing me in. Is this you Darza? Or Velcade's delayed 2nd life? Or is this you Pomalyst, after just a few pills? I know the power of killing myeloma is in the multiple "agents" combined together, but this "torture" supports my previous rants about being on one chemo/immunotherapy at a time, so I can isolate which side effects are from what. I meet with my SCT Dr on Monday March 27, so we'll see what his take is on all of this is...
C'mon myeloma, can't you cut me a break... it's my son's birthday today.

Happy Happy Birthday to my amazing son Scott! 



Throwback to better times...


=====================

What are the possible side effects of DARZALEX®?
DARZALEX® may cause serious reactions, including:
  • Infusion reactions. Infusion reactions are common with DARZALEX® and can be severe. Your healthcare provider may temporarily stop your infusion or completely stop treatment with DARZALEX® if you have infusion reactions. Tell your healthcare provider right away if you get any of the following symptoms:
    • shortness of breath or trouble breathing
    • dizziness or lightheadedness (hypotension)
    • cough
    • wheezing
    • throat tightness
    • runny or stuffy nose
    • headache
    • itching
    • nausea
    • vomiting
    • chills
    • fever
  • Changes in blood tests. DARZALEX® can affect the results of blood tests to match your blood type. These changes can last for up to 6 months after your final dose of DARZALEX®. Your healthcare provider will do blood tests to match your blood type before you start treatment with DARZALEX®. Tell all of your healthcare providers that you are being treated with DARZALEX® before receiving blood transfusions.
  • Decreases in blood cell counts. DARZALEX® can decrease white blood cell counts which help fight infections and blood cells called platelets which help to clot blood. Tell your healthcare provider if you develop fever or have signs of bruising or bleeding.
The most common side effects of DARZALEX® include:
  • tiredness
  • nausea
  • diarrhea
  • shortness of breath
  • fever
  • cough
  • muscle spasms
  • back pain
  • cold-like symptoms (upper respiratory infection)
  • nerve damage causing tingling, numbness or pain
  • swollen hands, ankles or feet
Tell your healthcare provider if you have any side effect that bothers you or that does not go away.
These are not all the possible side effects of DARZALEX®. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
General information about the safe and effective use of DARZALEX®

======================

Or is it you POMALYST?

POMALYST can cause serious side effects, including:

  • Low white blood cells (neutropenia), low platelets (thrombocytopenia), and low red blood cells (anemia) are common with POMALYST, but can also be serious. You may need a blood transfusion or certain medicines if your blood counts drop too low. Your blood counts should be checked by your healthcare provider (HCP) weekly for the first 8 weeks of treatment and monthly after that.
  • Severe liver problems, including liver failure and death. Your HCP should do blood tests to check your liver function during your treatment with POMALYST. Tell your HCP right away if you develop any of the following symptoms:
    • Yellowing of your skin or the white parts of your eyes (jaundice)
    • Dark or brown (tea-colored) urine
    • Pain on the upper right side of your stomach area (abdomen)
    • Bleeding or bruising more easily than normal
    • Feeling very tired
  • Severe allergic and skin reactions. Call your HCP if you have any symptoms of an allergic reaction, including: swelling of your lips, mouth, tongue, or throat; trouble breathing; or skin reaction.
  • Dizziness and confusion. Avoid taking other medicines that may cause dizziness and confusion during treatment with POMALYST. Avoid situations that require you to be alert until you know how POMALYST affects you.
  • Nerve damage. Stop taking POMALYST and call your HCP if you develop numbness, tingling, pain, or a burning sensation in your hands, legs, or feet.
  • New cancers (malignancies). New cancers, including certain blood cancers (acute myelogeneous leukemia or AML) have been seen in people who received POMALYST. Talk with your HCP about your risk.
  • Tumor Lysis Syndrome (TLS). TLS is caused by the fast breakdown of cancer cells. TLS can cause kidney failure and the need for dialysis treatment, abnormal heart rhythm, seizure, and sometimes death. Your healthcare provider may do blood tests to check you for TLS.
  • The most common side effects of POMALYST include tiredness, weakness, constipation, nausea, diarrhea, shortness of breath, upper respiratory tract infection, back pain, and fever.
  • These are not all the possible side effects of POMALYST. Your HCP may tell you to stop taking POMALYST if you develop certain serious side effects during treatment. Call your HCP for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

What other important information should I know?

  • Blood clots in your arteries, veins, and lungs, heart attack, and stroke can happen if you take POMALYST. Most people who take POMALYST will also take a blood thinner medicine to help prevent blood clots.
Before taking POMALYST, tell your healthcare provider:
  • If you have had a blood clot in the past
  • If you have high blood pressure, smoke, or if you have been told you have a high level of fat in your blood (hyperlipidemia)
  • About all the medicines you take. Certain other medicines can also increase your risk for blood clots
Call your healthcare provider or get medical help right away if you get any of the following during treatment with POMALYST:
  • Signs or symptoms of a blood clot in the lung, arm, or leg may include: shortness of breath, chest pain, or arm or leg swelling
  • Signs or symptoms of a heart attack may include: chest pain that may spread to the arms, neck, jaw, back, or stomach area (abdomen), feeling sweaty, shortness of breath, feeling sick or vomiting
  • Signs or symptoms of stroke may include: sudden numbness or weakness, especially on one side of the body, severe headache or confusion, or problems with vision, speech, or balance

===================

I just can't tell if I am getting better or worse. These side effects are really throwing me a curve. And to think I "complained" for years about the "volcanic, surprise" diarrhea from Revlimid. What's that ole saying... "be careful what you wish for"!


Happy Birthday to my amazing son!
We were just so cute back then! 


Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can
Posted by

8 comments:

  1. AnonymousMarch 25, 2017

    I just spent seven days battling the flu..hope you aren't dealing with that. It was awful.
    Happy Birthday to Scott...one great looking guy.
    JC

    ReplyDelete
  2. JulieMarch 27, 2017

    Ugh, so sorry Jan! The flu and feeling like the flu is awful. Stay away from the cooties, and be healthy and ride! Hoping all the horses and darling kiddies are well and enjoying Spring! Thank you for always checking in, and all your cowgirl support :)) xoxo

    ReplyDelete
  3. WendyMarch 27, 2017

    Glad the flu is over. I have heard from so many people this year, that it's a bad one--even if you received a flu shot. I hope you feel better soon.
    Great picture above.

    ReplyDelete
    Replies
    1. JulieMarch 29, 2017

      Hi Wendy! Thanks for checking in and appreciating my writings :)) Luckily I haven't been sick this year! Just lousy side effects that make me "feel" sick. I think I have finally isolated the burning feverish skin pain to Darza's 2nd life after infusion side effects. This week I will extend my Dex and see if I can get this bipolar life of mine under control lol. Hope all is well with you and your husband. Let me know how he's doing. xoxo

      Delete
  4. WendyMarch 29, 2017

    Hi! Thanks for your quick reply. My husband is on a clinical trial and is doing pretty well. He's tired a lot and takes a nap everyday, but the results of the clinical trial, so far, are good. He takes Dex once a week and has a love/hate relationship with it! He's treated at Dana Farber in Boston. Although we live about 2 hours from there, their reputation as a world class cancer center is why we go. We try to make a day of it by doing a few fun things too. The camaraderie at the center actually helps a lot.

    The pictures on your website are adorable. You look pretty great. I hope you're feeling better.

    ReplyDelete
    Replies
    1. JulieApril 01, 2017

      Aww thank you Wendy for your sweet comments. I just never know if I'm too personal or not, or which pictures I should post. Thank you for always reading and commenting. Glad your husband is doing well on the clinical trial. How did he choose, or was chosen for that particular study? I know one day I will "need" to do that too, but I would imagine it's a bit "scary" taking "unknown" meds, with possible "unknown" side effects and reactions. Tell him I think he's very brave. Glad you get to enjoy the appt days! Thank you Wendy! :))

      Delete
  5. WendyApril 01, 2017

    Your comments are perfect! They are funny, honest, well-articulated and compelling. Curt is on a trial called "ACY". Since it's a trial with some history, he has a good idea of what he's getting into. The trial has little side effects, he says. He does tire easily, but still goes to the gym. At 64, this isn't too bad!



    ReplyDelete
    Replies
    1. JulieApril 11, 2017

      Hi Wendy, thank you for kind comments! I really do appreciate it :)) It's surreal writing my posts to my "invisible online friends", and when you become "real", it gives me a huge smile and boosts my motivation to keep writing and posting. Good to know about Curt's trial treatments, and gives me hope and confidence to one day do the same. Glad he has history on what he on, as it would "scare" me to take unknown meds, but I guess that's the whole point of a trial, right. What "type" of MM does he have, or how are his levels measured? I know many that follow their Light Chains, as opposed to IgA, IgG, etc and MProtein. Tell him I think he is very brave and you are an awesome caregiver. Thank you Wendy!! xoxo

      Delete

Subscribe to: Post Comments (Atom)

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.