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Tuesday, September 18, 2018

Same (Painful) Story, Different Day...

Hello 9.18.18

Seems like this month, all my important events and status reports fall just before or after my regular "On the 8's" post dates.

I expect "Big" news on Monday Sept 24, my next Dr appt and Darzalex infusion day... as I should know the results of tomorrow's MRI, and I suspect my IGA continues to climb,  even though I've gone back to doing Darza every other week. I can just "feel" when myeloma is "winning"... Pain is just such an awful reality reminder...

But for now, until I know What's Really Going On... here's my mini update-

Pain is my nightly visitor now. When the lovely weekly Dex steroids waned yesterday, as I suspected,... the evil, excruciating, vibrating, deep deep deep leg bone nerve muscle pain crept back in. Seriously! Just like the ocean tide. Rolls in, rolls out. Creeps in, creeps out... It's crazy how predictable this has become now. Never had anything like this in my life! Imagine, at the end of your day, when you just want to RELAX and chill, read a book, watch TV or whatever your evening relaxation is... this maddening, incessant, deep ache invades, not allowing you to sit, lay down, relax. It's almost like a "jack-hammer" drilling away, up and down my mid, and lower left side. And all this really began after my severe reaction to my first and ONLY Zometa infusion... hmmmm...connection??

So every night now, I begin my new ritual of OTC pain meds when I feel the ache cramping my leg, and left side. I start with low dose, then graduate up to a higher dose. If that doesn't relieve the ever increasing pain, I add a muscle relaxant pill. A bit later I take my nightly Pomalyst pill, then as the pain pounds more deeply, I add another pain pill, then I slather on Bengay, or other supposed pain relieving cream. Lately, I've even tossed in one 4mg Dex steroid pill, hoping it's magical anti inflammatory properties kick in, and give me relief. In between all this, I begin pacing, walking, shaking out, stretching out, pounding my left leg, in hope of relief and sleep. Finally, at some point, so exhausted, so beat up, so frustrated, so sad, so overwhelmed with my "realities"... I sleep. Eventually, at some time, early morning, the ache disappears, and I wake up as if this insanity never happened, with just a tiny dull ache remaining, as "night's calling card". As I write this, I have a smirk on my face of how crazy this is! I wish there were bruises on my leg to make this "visually real", as it's just so unbelievable!.


Until next time, here's some of my favorite postcard sayings ~

I don't Live in Fear,
but I Have Fears

Yes, I'm always analyzing what is
and what can be

My life is so very different than I thought it would be
But I am grateful to still be here

Most "hate" the "Dex-affect"
But I sure love it's uplifting, anti inflammatory properties!

Just when I think I can't,
I do!

Ah, yes... 
I wouldn't go back, but I would like a cancer free body

Me, every other week on Darzalex days

Every day a new lesson,
a new challenge,
new solutions to accept

Breathing, yes, deep breathing is so important
and cleansing


Thank you for checking in and following my Myeloma journey. It's never ending, full of surprises and unwanted realities, and keeps me thinking about life 24 7. 

May your life be joyful, fulfilling and you are doing what you can to make the most of your precious time on this beautiful earth!




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6 comments:

  1. UnknownSeptember 25, 2018

    Just wondering what your tests results showed yesterday. I follow your blogs and look forward to hearing your results. Hopefully everything is improving.

    ReplyDelete
  2. JulieSeptember 28, 2018

    Hi there Unknown :)) Thank you for caring and enjoying my posts! I appreciate you letting me know you look forward to my updates. Are you a myeloma patient? Share your story with me! Thank you for commenting and letting me know :))

    ReplyDelete
  3. UnknownSeptember 28, 2018

    I am a myeloma patient. IgA Kappa. My name is Jewell. Not sure how to change from Unknown to Jewell. I have posted before. I was dx in Oct. 2015. I had over 90% in bone marrow, but no bone involvement to speak of. Mostly just anemia. CyBorD induction. Had SCT in April 2016. No maintenance. Relapsed in Dec. 2017 - RVD. Have been on Revlimid 10 mg. But at last appointment my Kappa is rising above normal. That was Sept. 18th. Repeating tests Oct. 23rd and back to the doctor Oct. 30th. Are you using a myeloma specialist? I only have an oncologist/hematologist, but he seems really up to date on all the meds. He has quite a few myeloma patients. My daughter is wanting me to go to M D Anderson in Houston. Mentioned it to my doctor last visit. He said but there is so much more that we can do. I am so confused sometimes. Right now I don't have a lot of pain. Just a lot of fatigue and some GI upset. I feel so bad for you and all your pain. I'm afraid sometimes that I am looking at my future. I look forward to reading your blogs. I hope that I am reading them for years to come.

    ReplyDelete
    Replies
    1. JulieSeptember 28, 2018

      Aww Jewell, thank you for introducing yourself and sharing your story. I do remember you from previous post comments! :)) Thank you for commenting, letting me know my writing is meaningful.
      Wow, 90%!!! I was 70 IGA at Dec 2009 Dx. So glad yours was caught when it was!
      I had super high anemia at Dx, and no bone pain until this stikn Zometa infusion in July. I really think that triggered something...
      Please tell me about the CyBorD, as that's my upcoming treatment. I posted about it today. I asked for a low dose Velcade, as worry about Neuropathy. Does that affect you? And also, Cytoxan scares me, as I had a lousy GI reax from my one and only IV back in June 2010, in prep for my July 2010 SCT. Did you do pills or IV. What was your dose?
      I'm sorry myeloma is rearing it's lousy self again for you, but yes as your Dr said, you have soooooo many options available to you. You can Google all the options or go on the IMF or MMRF, or Myeloma Crowd website, or ACS, etc to read all the options.
      I have a group team of Drs that are all Oncologists/Hematologists. And then this team also consults with my other team at City of Hope. So they are all generalists, but several of them do specialize in Myeloma. I feel very well taken care of with a team of so many Drs consulting, and a large supportive Nursing staff too. In your case, if you are with a private practice, you could always consult with MD Anderson too, but keep your current Dr, if you are comfortable.
      As long as you are up to date with treatments and options, you should be ok, and you can bring in recommendations, studies, etc, in case you feel your local Onc may not be aware of everything. So sweet your Daughter is on top of things for you, and so supportive :))
      I hope you don't have bone pain, or nerve pain or whatever this craziness is I'm experiencing. I was too smug for too long, thinking being IGA, I was "different" lol.
      Do make sure to have Skeletal Scans, and PET CT Scans, and MRIs to pick up on everything. I was living in a dream world, but sometimes "ignorance is bliss" in my case. But honestly Jewell, in comparison to all the patient's stories I read online, I'm better off than a lot. So many tragic stories out there! And yes, when I read other's stories, I feel as you do,,, looking at my future.
      But there is so much research and so much hope for so many treatments now!
      And yes Fatigue and GI, is just life with Myeloma :((
      but do what you can to feel well, happy and positive.
      Thank you so much for sharing your story Jewell, and please always update me on how you are doing!! xoxo

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    2. UnknownSeptember 28, 2018

      I honestly can't remember the dosage of my Cytoxin, but it was pills. I had to reduce the amount because it affected my WBC. I had to take neupogen shots to bring it up. I have some neuropathy, mostly in my hands. But it is not bad. Thanks for your advice. I will let you know what happens after my next appointment. Jewell

      Delete
    3. JulieOctober 02, 2018

      Hi Jewell, thank you for letting me know that and I'll take low WBCs and Neupogen/Xarxio shots over GI issues :0 !! I had very low WBCs with both Revlimid and Pomalyst, well actually with all my treatments. It turned me into an "OCD germaphob hermit", but I as you read from my posts, I still get out and about, but carefully. I just had such a yucky strong reax to high dose IV Cytoxan, that I'm kinda worried for the pill form. But from what others have said, and I talked to my chemo Pharma today, most don't have extreme nausea with the pill form. Whew!
      I'm hoping my Neuropathy doesn't increase from Velcade, and I will continue to push for a lower dose, if it works repressing stikn myeloma.
      And yes, please let me know how your appts go, and your treatment journey. xoxo 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.