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

Friday, September 19, 2014

Revlimid! My ah-ha moment!

Dear Revlimid-
Thank you, Thank you for saving my life by pummeling Myeloma.
But at the same time Revlimid, you are ruining what's left of my ruined life!
I am a house-bound, bathroom prisoner more than ever now...
I've discovered it's YOU Revlimid!
YOU are the cause of my "chew and poo" lifestyle!

I've tried to eliminate (ha! no-pun/pun intended!) so much from my daily ingestion to figure out why I have spontaneous volcanic GI issues.
I try to eat well, then it alllllllll goes through me.
I'll even "starve" myself, just so I can leave the house.
I eat light, healthy, bland, and that too goes through me.
I think I'm fine, then suddenly...cramps! and I am not fine at all.
If anyone is looking for me in the house, they know where to find me... and it's not out riding a horse!
Whatever I do regarding eating, I've finally discovered it's YOU my life saving Revlimid- you are the cause of awful, unpredictable, volcanic GI distress!
You are my nemesis, yet my best friend and ally. Ugh!

Recently, as an experiment, I stopped taking Dexamethasone, Acylovir, Mepron, etc, thinking it was one of those meds aggravating my GI system... as I really didn't think it was you Revlimid that was causing my intestinal distress. But nothing changed! The crazy volcanic reactions continued...

Seriously, I've read online about everything Myeloma since 12/30/2009... and just now stumbled upon this incredibly relevant ah-ha moment video: #AskDrDurie: How can Revlimid’s diarrhea side effect be handled?
How had I missed this?! Dang you life-saving Revlimid! It's YOU! Now I know who's the "chew and poo" culprit!

I've heard other MM patients talk about their diarrhea issues, but it just didn't sink in that it was you Revlimid causing me all this distress. I did fine on 10mg of Rev during initial treatment early 2010. But thinking back... that must have been because I was so corked up from 40mg of (4-days on) Dex!!! I had quite a time with GI reactions when hospitalized at City of Hope, but that was from all the high-dose Melphalan and the entire stem cell transplant process and neutropenic crash. (And I think they had me on Lomotil.)

So it must be that over time, my GI has begun to rebell. I "forget" that I have been back in full time treatment for a year.. and my GI system is so much different now and dang it, so much more sensitive! Not to mention, it's over 4 1/2 years I've been in (almost) continuous treatment!

And so, I must accept that "chew and poo" is here to stay and start trying out everyone's anti-diarrhea recommendations and medications. I've been so reluctant to add another chemical or prescription to my system, but I give up... it's a quality of life issue now!
Hello Imodium, Tums, Pepto Bismal, Kaopectate, and RX strength Lomotil.
Fellow MM-er's, please let me know what works best for you and possible side effects of each! I am not very brave at trying new meds anymore!

So now I know it's YOU Revlimid that causes unpredictable, volcanic diarrhea! But I still love you Revlimid since you brought me back from death's doorstep in 2010 and you continue to stomp and chomp myeloma outta my cancerous system!

Watch this video! Thank you Dr Durie and the IMF for this huge ah-ha insight for me!

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


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7 comments:

  1. tahoegirl.blogSeptember 19, 2014

    I've pretty much had the same issue. But only on certain days . It seems the day after dex I'm fine and most of the next day. Then Tuesday , I get hit with eat something and need the bathroom. But I also work my little part time job Tuesday , so I take 1'immodium . That does help. Then I just need to be near bathrooms after I eat the rest of the week. It was never a problem when I was on rev before. So maybe it is something that builds up over time.
    I'd definitely try the immodium . I use a generic brand.

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    Replies
    1. JulieSeptember 20, 2014

      Hi Christina! thank you so much for sharing your absolutely parallel story! We must take our Dex on the same day, as I'm ok on Fri, Sat and part of Sun. Then boom! I feel like I've been punched in the stomach and soon "the volcanic poops" begin for days and days! I did the Imodium today (along with Dex) and I'm ok so far! And like we've figured out, it must be after being on Rev for years... finally saw that pinpointed in the Dr Durie video above. Thank you for your reply Christina! Do you have a blog with your story? Best of luck with your treatment. Are IgA or IgG?

      Delete
  2. LindaSeptember 23, 2014

    Goodness Julie, I sure hope this works for you! Perhaps others will give you some good suggestions to help get your mobile life back. You need to be able to take drives in that gorgeous Carolina blue Bug of yours!

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    Replies
    1. JulieOctober 03, 2014

      Hi Linda, thanks so much for checking in :) Yes Imodium and Dex work to cork me up so can get out and about a bit. I have my Carolina Bug entered in another classic car show this month! Hoping all is great with you and EZ and your beautiful family. Thank you for your friendship! xoxo

      Delete
  3. AnonymousSeptember 26, 2014

    Julie, You have such a sweet spirit enduring all of this "Stuff".... Cancer treatments - meds are so harsh.............. But necessary to beat this horrific disease....... Hopefully the immodium will help to calm the 'volcanic poops".You are "my hero" and loved by so many..... I am glad that you and Jim are able to go on small trips..... Falls cooler weather should be a blessing.... You all are in our thoughts and prayers.... We love you and the rest of your family... Evelyn and Neel

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    Replies
    1. JulieOctober 03, 2014

      Thank you Evelyn and Neel for your endless love and support! I do have good days here and there and am learning how to deal with my volcanic life :) We can plan a date, and I won't eat before we go, and then I'll rush home after our lunch date! Hoping all is wonderful with you guys and I will email you!!! xoxo

      Delete
  4. iamnjtDecember 29, 2015

    Thank you so much for sharing this story. God bless you.

    ReplyDelete

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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.