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

Friday, February 17, 2017

Stop This, Start That, Moving On

Hello 2.17.17


Ok Pomalyst, you're history for now, as you're affecting my CBCs in a terrible way and you're not really pummeling myeloma anyway. So GoodBye Pom. I'm Neutropenic, as my immune system apparently can't handle your "power". Dr P thinks Pom at 4mg is just too much for my fragile system right now. But I do wonder, being on this triplet cocktail, is it only the Pom doing this? Is Velcade a culprit too? And Dex? Of course they all are! See, this is why I have always preferred singular agents with Dex, so we can see which chemo does what to me, independently and individually. With combo cocktails, who knows which is doing what, right? Myeloma buddies, how do you sort all this out?

My appointment was full of information and lots to talk about and decide.


While looking at my recent labs, surprisingly my IgA and M Protein ACTUALLY CAME DOWN A BIT! But Dr P believes they are still way too high to continue another month status quo with Pomalyst, Velcade and Dex. I agree. Let's slam those myeloma cells, get the numbers down (hopefully), then talk about the next chapter. Ugh, I just don't like medication changes, and always hope beyond hope that I can get longevity mileage out a treatment regimen before tossing it out. But as they say, numbers don't lie, right...

 I think this drop is meaningful

 M Protein down a bit too

Dr P wants to begin Darzalex in a week or so (Feb 28), and she also suggested adding Ninlaro to the mix, with of course Dex. Can you guess my perspective on this... Yep, I said... well No! I prefer to begin a new chemo singularly, as I mentioned above, as I like to know which medication is causing what. And I think it's important to know if each agent is working independently. No I am not a Dr or chemist or medical researcher, just one who knows my body, and I am a "less is more" person, as I have mentioned a zillion times before on this blog :))

I agreed to begin Darzalex with Dex, and hold off on a third med. Let's see how I do on Darza, and if it is the "new wonder drug" many have indicated it is. We'll find out if it indeed does "wonders" for me as it has for others. Then we can add back Velcade, or Pom or Rev or try Ninlaro. Choices, choices, choices. OyVey!

But then, after processing and mulling alllllll this over, I began to think: "if my current cocktail is now making a dent... why CHANGE??" Oh, that's right, my numbers are really high lol, and also one of those beasts is dragging my immune system back to SCT hospitalization status. Ok, Darza here we come Feb 28.


I also consulted with the chemo specialty pharmacists right after my appointment and let them know what's happening (they know me well) and I quickly asked a zillion questions about the scary first infusion. "Should I premed with my regular dose Dex before I come?" "Should I bring my own inhaler for asthmatic reactions?" "Should I premed with anything else?" Well, yes, yes and yes they replied and suggested yes, premed with Dex, premed a few days before with Claritin, Zertex, Allegra, Benadryl, etc. I thought these were awesome suggestions, based upon what I have read the first infusion challenges are! Drug up Julie!



cancer-treatment/chemotherapy/oncolink-rx/daratumumab-darzalex-r

https://www.darzalexhcp.com

https://www.darzalex.com/

But I still wonder... should I stay on the current cocktail I'm on?? It is slightly working. Ugh, I hate you myeloma! Leave me alone and stop consuming my entire being and life!
So that's the plan man, and I get 10 days off Pom and Vel to hopefully boost my system back up. I took 20mg Dex prior to my appointment, as I didn't know I wouldn't be getting my weekly Velcade shot. I took my remaining 20mg Dex today. Yiippee, Dex me up you crazy 40mgs, buzz me up for 48 hours! But the type, length and intensity of my looming crash and side efffects is always a nasty surprise. It's worth it, as I felt pretty good yesterday and today, so who knows. Felt good, that is, for being sooooooo immune compromised. Good enough to get out in this huge rainstorm So Cal is experiencing:

 I'm such a rebellious cancer patient-
Here I am immune compromised and Neutropenic, 
but you can't keep me away from 
Nature and all her beauty and beast!

 Normally, this area is dust bowl dry, 
but at it's peak, this must have been over 7' 
of raging river!

 Logs, telephone poles, coverts, lumber, mini boulders
all went sailing by, like they were feathers!

Beneath this raging water
is normally a 5'+ drop off! 
Then add 2'+ more of water
Very intense!

Those pictures may not look dramatic, but our normally drought dry creek bed was a roaring flash flood river today! WOW! We were all over the news too. I took a lot of pictures and videos, got quite wet and so did my phone, so I had some delay in downloading and retrieving pictures. I will add more tomorrow, so check back.

 Oh yes, the fierce winds remodeled our corral roof! 
More like a sunshade or rain slide now!

So much seems to always happen, when I think so little will LOL. Such is life, and I am so very grateful to have this life, myeloma drama and all, as long as I can breathe deeply this life of surprises, love, beauty, laughter, unexpected excitement and beautiful people and places surrounding me!

And this happened to poor Jim a few days ago!
He slipped and fell on our tile entrance
where I had a towel from all the rain.
And that was before this BIG GIANT of a storm!
He's much better now! 

 
And then the next day this happened!
Our son Scott planned a fun and fancy date for all of us!
See Myeloma, you can't stop me from
living life in the "small" way I do :))


Thank you everyone for checking in and caring about my life, status and story as you do!

Here's an interesting SCT article. I always wondered how they "cleaned" our stemmies prior to the stem cell transplant! clinical-trial-cleaning-up-stem-cells-before-they-are-given-back-during-stem-cell-transplant/ 


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


4 comments:

  1. The new plan sounds like a good one...always thankful for new combinations to hit the MM with!! Stay safe out there in CA...what a monstrous storm! Praying for you Julie and thankful for your handsome supporters and fighting spirit...now go get 'um!! ❤️

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    1. Thank you Linda for checking in :)) Love all your family pictures and hoping everyone's health is ok, and trust that Ernie has healed up just fine, and back to all his activities. Enjoy your beautiful house and property! Love your pictures!! xoxo

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  2. Hi Julie! I've been wanting to mention to you there is a nice program on Netflix called "Heartland." I have never been a horse person, although my husband and son are. I started watching it from season one and have developed a greater understanding and now a respect of horses and their relationships with their owners. If you need an "escape" from our reality, like G rated scenic shows, horses and owner relationship stories, with some human relationship kind of "chick flick stuff" you should check it out. You could really get lost in it for a while (especially if you binge watch on some days that you need a longer distraction.) Most likely you're familiar with it, but if not, I hope you enjoy it as much as I have. God bless, and thank you for sharing your story. I look forward to each post and pray for you to get great results! Carolyn McNichols

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    1. Hi Carolyn, thanks for checking in and the sweet post! Years and years ago, when my daughter was in upper Elem school/Jr High, she found the Heartland book series and read them 24/7. I remember reading some too :)) Recently, she too had found the series and mentioned we should binge watch on my crash days! So cute how you mentioned it!! And sweet that your husband and son like horses! Do they ride, have them? Another blog friend Jan, on previous posts, is a horse lady too :)) Thank you so much for following my crazy MM story and commenting. Means so much to me to know who's reading and that my posts mean something to others :)) xoxo

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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.