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

Friday, January 27, 2017

Cocktail Time!

Hello 1.27.17

How the days fly by! So much has happened since my last posts, regarding my mental and physical status on treatment. I almost don't remember all the details. But I'll try to keep this update short and sweet and to the important points.

After mulling over all my options, reading and reading, consulting and consulting, I decided to go with the Velcade shots... and the Pomalyst 4mg pills... paired with the Dex 40mg steroids. If this delightful cocktail doesn't scare Myeloma off, then Darzalex, here I come, probably along with some of those?
I read a lot online. A lot! Just my academic, inquisitive, counselor, information hungry personality. I read myeloma group posts, research studies, clinical information, pharma information, medical treatment center sites, other patient blogs, myeloma websites like the MMRF, IMF, Myeloma Crowd, Myeloma Beacon, Patient Power, etc. I read read read about myeloma ad nauseam, treatment options, side effects, etc. I realize my status isn't terrific, and my current stats are "scary", but I also realize I am very fortunate. Fortunate not have bone involvement and fortunate still to have decent organ function to handle a variety of treatment options. 7 years has taken it's toll, but it hasn't "taken" me.

With decision made, and new confidence to move forward, off to the chemo lab I went last Thursday, January 19 for my Dr appointment and first Velcade injection. After reviewing my blood stats, my Dr and I felt ok going ahead with the Velcade, Pomalyst, Dex "cocktail", (in spite of some low CBCs). She wanted start the Vel and Pom at the same time though. Velcade shot, right after my appointment, then Pom pills that night. But it would take a day or two to receive the Pomalyst, so she postponed the first Velcade shot one day. Oh well, go the flow Julie. Nothing is predictable about cancer and cancer treatments! Pom was ordered stat, to be received Friday or Saturday. So much for gearing up mentally for my first Velcade shot, only to be sent home to return the next day. See, once I make a decision to do something, I want to turbo charge ahead. No more waiting, wondering and stressing about all the "what if's". But whatever,...seriously not a big deal at this point. Decisions made. One day postponement, so not a big deal. We ordered the Pomalyst to be Fed Ex'd overnight and I was to return on the next day, Friday Jan 20 for the first Velcade shot.

Get in my cells Velcade!

At this point, I'm more than ready to switch treatments. Let's pummel myeloma, triplet cocktail! Honestly, my status worries me, and I welcome this new treatment, hoping it makes a dent. Done deal. No problem. Let's do this. So Friday, I returned to the chemo lab for my first Velcade shot. In a crazy way, it was like a "homecoming", and so great to see all my fave chemo lab nurses, pharmacists, patients and staff. Such wonderful people, saving all our lives!

Shoot me up!

I opted for the belly-fat shot, as unfortunately, Dex Steroids have really changed my body. I have plenty of belly chub now for successful SubQ shots. Ugh I just hate what steroids have done to me. But I can't go back to my "healthy anorexic", low calorie lifestyle now, right. Gotta get all those important food groups in daily, and not obsess over calories. Dex "makes me" want things I never cared much about before, like dark chocolate, salty foods like chips, cheese, etc, and I do more nuts now for protein. All those are rather high in calories, but what the heck, whatever!

 How I feel now lol

Thank you steroids for chubbing me up!

First shot in, stung a bit, but easy-peasy. Makes me laugh at myself for worrying about changing chemos. But, that was just the shot, I "knew" there were reactions to come. I just didn't know what, and when, and I seriously hate the side-effect's unknown time line. But oh well, you know my motto has always been: You Can't Control The Things You Can't Control, so Analyze it, Process it, Deal with it, and Move Forward!
Jim was just really glad 
they didn't mistake him for the patient!

And on the way home...

The conversation of the day was all about "cocktails", so Jim thought no better place to stop on the way home then BevMo! I've only been in BevMo once before, as I've never been a drinker, but now... it's all looking rather interesting. First on my list: Fireball! Bailey's and coffee, Malibu Rum, Sambuca, then... that Mint drink I remember from a long time ago... "Grasshopper"!!! ... ahahaaa... I'll have to ask my oncologist's how "chemo-cocktails" fare with "real cocktails". About time I grow up and start drinking. I'm running out of time... wink, wink!

Then This Happened: while we were driving and running a few errands beyond BevMo, turns out my Nurse was trying "frantically" to get a hold of me, and tell me NOT to begin the Pomalyst, as my labs from earlier in the day showed my CBCs were too low to add the Pom in with the Velcade. Seriously!!! I'm all geared up for this Dex, Vel, Pom cocktail, and the brakes are abruptly put on, and we skid to a cocktail halt. I was glad though, that I at least had Velcade in my belly, with Dex down the hatch earlier, as I seriously now get concerned when on any treatment break... even for a week.

My Pomalyst 4mg did arrive on Saturday. I picked it up from the local Fed Ex office, tucked it securely in my medicine drawer for later use, shook my head, and tried to process this crazy myeloma ride with "cocktail time" cancelled. At least I was strong enough for a singular chemo option, paired with Dex. Labs in a few days, they said, to update my status. Here's how my first lovely Velcade shot site looks now:


I did have a red rash there too, for several days after the shot, but the rash has subsided (with some good ole Benadryl and Cortisone cream). Just the bruise is there now. Not sure why it bruised? It's only a little bothersome, and so far, so good, no dramatic side effects... well a few... I won't give you the GI details, but if you've been following my blog for a while, or know me personally.... here's the hint... I have the OPPOSITE GI problem now, then I did with Revlimid. Maybe that's due to how cold it's been, and I'm not drinking gallons of water daily, or maybe it's due to the myeloma (itself) side effects? 

So I did blood tests again on Tuesday, and my Dr contacted me and said my CBCs went up just a little, just enough, so now ok to add the Pomalyst 4mg in. It's official, I've joined the myeloma 3's a charm, cocktail club!
And that's my chemo cocktail story.

Today:
Status labs this morning. Dex down the hatch. Velcade shot in the afternoon. Pom at night.
I'm tired, fatigued, weak, headaches, bit of Neuropathy, always thirsty and dehydrated and have had a "breathless" issue, mainly after eating. Hmm... I remember that from back in 2009.... will have to mention that to my Dr and Nurses. Most likely due low CBCs. Anemia? Oh myeloma, you are the "gift that Never stops giving". But still, I have many more positive "gifts" then negative...

Rained and stormed a lot here. 
Blew some panels around, but all's good and nailed down now.

Thanks for checking in and following my story. Please let me know how you are, what treatments you're on, and MM patient or not, how your 2017 is going so far :)


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


4 comments:

  1. Julie, did they offer you Zofran with the Velcade? I sued to also take Zofran with my Velcade. Never had any side effects like nausea, but an ounce of prevention... Well I decided to be a big girl and take the Velcade w/o my friend Zofran. No side effects still. Now I just get the Velcade, solo. Also, have them "push" the velcade slowly. It might help the bruising and stinging. I really don't even feel it anymore. I've never bruised like that, but always get the red rash. Good luck!

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    Replies
    1. Hi Sheri! Thanks for your comment and feedback. So far so good. I've had 3 shots now and no bruising like the first. Must have been how the shot went in the first time. I just have redness surrounding the other 2. So far no real reax either, but I do take my Dex on infusion day and day after. Is Velcade working for you? How is your status? Thanks for checking in, and I will be doing my full update tomorrow. Hope all is great with you Sheri :)) xoxo

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    2. Velcade is still keeping me stable. M-spike is .1, light chains are up and down, but usually the ratio is still in normal range, which is what my dr. wanted for my kidneys. I take 20mg of Dex and I have been waiting to take it at bedtime the day of my treatment. It seems to help with the insomnia. And I have never had the really bad crash that everyone talks about. Hoping the Velcade works for you!

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    3. Hi Sheri, glad all is going so well for you :)) I may add Velcade back in, in a few weeks with the Darzalex... we'll see. I didn't have any negative reax to Velcade thankfully, but I was only on it for a month (4 injections). Yes, I have heard some take Dex at night to get a head start on it... it may try that some time. Thanks for letting me know it works so well for you!

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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 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.