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

Thursday, September 9, 2010

P and P = Pain !!!

( 9-15-2010- and not doing any better from when I posted this last week :( 

Well I spoke too soon (on my previous post) ... eekkkk I have been attacked by the lingering affects of Chemo and the millions of medications that I was, and am on ....
I now have (what i am calling) the P P effect....

Paresthesia

Peripheral Neuropathy

More to come when I actually have use of my extremities and it doesn't feel like I have myself plugged into an electrical socket!!!

Me... 24/7 now ...

 And I welcome your suggestions/remedies/advice as to how to deal with or delete this awful side effect!!! It's not getting any better and I am not very good at dealing with not feeling good :(
9-15-2010


8 comments:

  1. Radar,

    Still following your blog every chance I get. There sure are ups and downs aren't there? I know you're wishing that things will level out for you, but just keep hanging in there! Golly, you've been through a LOT! I sure hope you can make it to Ft. Worth next summer! I'll give you a hug you'll never forget! :)

    Sure hope your on-board electricity generator calms down. You're amazing...!

    You're always in my thoughts and prayers, Julie!

    Love,

    Russ

    ReplyDelete
  2. Jennifer AbramsSeptember 10, 2010

    Julie,

    Damn those chemo drugs! Feeling those pins and needles in your feet and hands is probably the least of what you have. That, and the aching bones, AUUGH! It WILL go away. Thinking of you every day, and sending all my good wishes and thoughts. I hope the power of everyone sending all this good karma your way helps the pain a little.

    Love,
    Jennifer

    ReplyDelete
  3. Julie, I sufferred the same P & P after transplant (16 months ago.) Pain Management at M.D. Anderson put me on Lyrica. It has been extremely helpful as far as eradicating the electrical shock pain; howeve, the neuropathy itself is still pretty severe.

    ReplyDelete
  4. Damn it Julie - What'd I tell you about putting your finger in the electrical socket? ;)

    I'm sorry to hear about this new P & P development, but I know you will make the most of it (as you ALWAYS do). Hoping that this is something that will only last a few days and then never again.

    Let me know if you need anything! Great seeing you!!!!!!! :D! You look AMAZING!!!!!

    xoxo,
    RR

    ReplyDelete
  5. PS....

    hahahaha... just realized that maybe this is why you were/are always so energetic... hahaha... geez Julie - I always knew you had so much energy... Now I know WHY - you're finger is in the electrical socket!!!!! You are a shocker! ;)

    xoxo,
    RR :)

    ReplyDelete
  6. Hey Julie,
    So so so glad your doing better. I have been thinking and praying for you. I know its been the fight of your life, but it sure is paying off. Its wonderful news that your in remission and all your hard work, (along with Jim) has paid off. Keep up the fight girl :)

    XXOO

    Maureen Beaman

    ReplyDelete
  7. Julie,
    Hang in there! All of your friends and loved ones are rooting for you and here to support you. Please let us know what it is we can do to help/make you more comfortable, etc. We miss you here at COC!!
    Take care,
    Leslie Carr xoxo

    ReplyDelete
  8. Julie,

    Unfortunately P and P are common side effects from myeloma therapies these days (thalidomide, velcade, vincristine, cisplatin are among the drugs causing these problems).
    Do get a consultation visit from the palliative care/pain specialist team. They know exactly the right concoction to give you to ease the pain while your body is recovering from P and P. In some cases, it may take years before these problems get better. Get some interventions soon to maintain your quality of life.

    ReplyDelete

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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.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.