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

Wednesday, December 30, 2020

Out With 2020, In With 2021 with New Choices and Decisions To Make

 12.30.20

Hello Friends and Loyal Readers-

"HAPPY" (haha!) 11 YEAR MYELOMA DIAGNOSIS ANNIVERSARY TO ME 
TODAY, DECEMBER 30!!!

Can you believe I have been FIGHTING Myeloma for 11 years now? I should be "dead", but so darn grateful, thankful, blessed to still be here. Seriously unreal, and unbelievable, right! 11 years, wow!

On this day, 11 years ago, I was diagnosed with Multiple (WTF) Myeloma. 
11 years ago, December 30, 2009, I was diagnosed with INCURABLE MYELOMA CANCER. 
11 years ago changed my life forever, but on that day, I could not possibly comprehend or understand what was ahead of me. 
I heard the word CANCER and knew what that meant. But I sure did not know ANYTHING about Myeloma, Multiple (Who?) Myeloma. 

Everyone said- "Julie, Don't Google It!", "Don't Get Online and Read!" HA! That's EXACTLY what I did that night, and continue to do almost daily, to keep informed about what Myeloma is, how it's treated, how it mutates, morphs and changes, and how this huge unforgiving train comin my way, directly at me, is ready to run me over and do me in any day...

11 years ago, December 30, 2009, I was diagnosed with Myeloma. Multiple (OMG) Myeloma. I've survived this crazy, incurable cancer roller coaster insanity called Myeloma, for longer than anyone thought I could or would. Myeloma has been trying to KILL ME for 11 years now, but I ain't going down without a huge fight!
UNBELIEVABLE RIGHT!!!



Yesterday 12.29.2020 I had a Dr consultation appointment to plan the next treatment attack. My Kyprolis IV infusion was cancelled because my CBCs, Hemoglobin, Platelets, Red Cells, etc, are too dangerously low for chemo, so I received 2 bags of blood. So many things I thought I would "never do", I do now to stay alive. Thank you so very much to all the Donor Angels out there, saving our lives, One Bag at a Time!

11 years ago I could not even fathom where I am today, but I always thought I would still be alive. Yep, I was super naive and arrogant enough to think I was "different", even though a Myeloma diagnosis is DEADLY, full on deadly. I just couldn't couldn't fully absorb I was Not going to die an old lady, walking her pony down the road, thinking it was a dog or goat :)) Myeloma just wants to eat us up alive. And at this time, there is NO CURE, just chemo options. I seriously didn't question my long term survival at diagnosis. Stupid Yes, as Myeloma is medically TREATABLE, until one's treatment options "run out". But thankfully, all the incredibly BRILLIANT MEDICAL SCIENCE RESEARCHERS and Doctors are always on the hunt for novel TREATMENT combinations for us, always researching new options and a possible "CURE" for this awful, relentless,  morphing, mutating, incredibly SMART cancer. I hate you Myeloma, but from a bio-science perspective, I marvel at what cancer can do to a once healthy body... 

Well, here's my most recent Lab stats, they're not happy news and kinda scary!

Was wishing this blood sample had 
better news... 
Myeloma is smart, and mutates Fast and Furiously
when we become "Refractory" to the treatments we are on.
So on to the next level of treatment...
Better Brave Up Julie!


IGA is my telltale status marker
Yikes! Almost 13x the HIGH end of Normal!
As they say... "Numbers Don't Lie"...


How can the Beta2 increase like this in only several days? 
Well I did reduce the 40mg Dex Steroids to 20mg for a week...
This week I'll do 20mg Mon, 40mg Tues, 20mg Wed, 40mg Thurs. 
Just can't stand how poofy and bloated I am now :((

Ahahhaaaa!!! Me :)) 

Here I am, receiving 2 bags of donor blood-
Never thought I would do that, but I sure 
Thank the Donors for their Kindness and Selflessness!
Everyone in healthcare are amazing soldiers, warriors and life savers!

I always "bring" Jim with me,
have his picture in his car and mine always
and also a pictorial "shrine" to him in the kitchen.
He is always with me, and I feel his presence everywhere
in our house and property

Amazing what cancer patients go thru,
and so Amazing what the body can tolerate!
How can someone eles's blood co-mingle with mine,
and my body is totally ok with it! 
Can we just drain my Myeloma contaminated blood,
and replace it completely with some healthy blood :))


So what did my Dr and I discuss... 
Well a lot, and know she feels bad for me, as she knows Quality of Life is Most Important to me at this time, and she knows I am afraid of new side effects, and she knows I am scared of changing to new chemos, immunotherapies, and she knows I don't want another SCT (even tho I have millions of my own Stemmies for another SCT), and she knows I don't want to do the Car T (as too many I know have had severe complications, and eventually passed away after it seemed so promising)...  At this time, it's Hospice over Hospitalization for everything...

So I had downloaded a copy of all the FDA approved Myeloma meds as talking points, highlighted what I have already tried, had success with, and then eventually became refractory to- 
Here's the list of all the meds I have done since January 2010. Several of these I have done several times in different combinations with each other. Several of these I had somewhat miminal daily side effects LOL, minimal being so relative LOL. Diarrhea, extreme Diarrhea, Nausea, intense bone, muscle, nerve pain. Extreme Fatigue. Fevers. Steroid bloating. Neuropathy, Neutropenea, etc. 
Actually NOTHING about this awful journey has been minimal LOL...  but the WORST for me was Elotuzumab-Emplicity that seemed to grow, encourage, morph and mutate all my tumors, lesions, fractures, masses, etc!, into the "huge" out of the bone marrow, into body cavity, "masses". June, July, August of 2020 was so awful on the daily imobilizing pain and fever scale, (and unfortunately, that was when Jim was declining so fast also, and we put him on home Hospice.) So insane I am living with a Mass in my R side Lung Chest area (tennis ball size), R side skull area, and R side Abdominal (near the Kidney, Liver and Adrenal Gland area), softball size. So unreal to me. 

THE BEEN THERE, DONE THIS LIST:
Dexamethasone Steroids @ 20mg or 40mg, always paired with these-
Revlimid
Cytoxan IV prior to SCT
Melphalan IV with SCT
Revlimid maintenance
Revlimid
Kyprolis
Pomalyst
Velcade
Darzalex
Cytoxan (IV for SCT 2010, pill form for treatment Sept 2019 to May 2020)
Elotuzumab Emplicity
Revlimd
Velcade
Kyprolis
Next up??? Great list here of treatment options...

Had Radiation in 2018, for a week+:
Sacrum tumor, Skull, Ribs, Clavicle, collarbone tumor and several fractures 

Had Radiation in 2020, 2 weeks+:
Have a Lung mass size of a tennis ball, and Abdominal mass even larger, the size of grapefruit or softball, more clavicle and rib radiation- both R and L sides

Became "Extramedulary" in 2020

Add in:
Acyclovir daily to prevent Shingles
Omeprazole for Steroid stomach issues
Benadryl to prevent reactions and for sleep
Flexeril to help calm and untangel all the nerves and muscles caught in all the tumors, fractures and masses
Vitimins- B12, D3, C, Magnesium, Women's Alive, Tylenol, Opioids (that I don't use as they don't do much for me, so why use those and damage my body more!
.81 Aspirin, depending on the treatment and chance of DVT
And more I am probably forgetting

So what am I going to do, going forward... 
Everyone always asks if I seek out 2nd, 3rd opinions. I don't feel I need to, as I have a wonderful Dr who consults with the whole Kaiser Onocology Team, and is very aware of how I feel about how I want to treat this awfulness. And she consults with current research, studies, and clinical trials, and follows that VERY EXACTLY. She brings up the reports, trials, treatment options, when we meet. And Kaiser is paired with City of Hope, so I have access to any medication, treatment, drug, clinical trial, etc, I want. Again, I am the one putting the brakes on many suggestions, because I AM NOT BRAVE WHEN IT COMES TO YUCKY SIDE EFFECTS! But I did schedule an appointment for January, with the Kaiser City of Hope Myeloma Specialist Dr Sahebi, My local Dr will also consult with her, re my next chess move. They all work as Team and consult with each other all the time for case management and planning. What better is that? And again, I have access to ANY MEDICATION, CHEMO, IMMUNOTHERAPY, TREATMENT PLAN COMBINATION I WANT, Kaiser has never refused me anything, ever, and has always leaned towards a more "agressive" , "progressive" treatment perspective than me!

We discussed combinations of these, some I have done before, others new to me:
Thalidomide (very old school, and one of the 1st Myeloma treatments)
Cytoxan pills
Kyprolis IV
Ninlaro - Ixazomib pills
Sarclisa- Isatuximab
Darzalex
Xpovio- Selinexor
Blenrep- Belantamab



I never was a big "risk taker", and certainly am NOT now. I used to be much more "brave"  and took all this more lightly than now. But as I stare death in the face, with one foot in the grave, and know my High Risk IGA has morphed and mutated, I am more aware and scared than before, and KNOW I must make decisions I don't want to. And those decisions are:

1- I can deal with Lower GI side effects, but not Upper GI side effects and I know several of the newer meds are puking meds...

2- At this time, I do not want to be Hospitalized for the super duper 24 7 high dose, 4 or 5 chemos/immunotherapies at a time, as with stupid Covid, my family and friends cannot visit me. Face Time, etc is not my thing and when I feel Gross, I wouldn't have energy for that. I told my Dr it's Hospice over Hospital. She understands but would still like to be more "aggressive" than me.

3- At this time, I do not want to be Hospitalized for another Stem Cell Transplant, even tho I have millions of MY cells for it and it would be at the wonderful City of Hope. Maybe later on after Covid is reined in, if ever...

4- At this time, I do not want to be Hospitalized for the CAR T transplant, as sorry everyone, I "know" and "know of" too many Myeloma warriors that seemed to be ok at first, then tragically passed away, after thinking CAR T magically "healed and cured" them. And they were in reputable hospital clinical trails at City of Hope, and all over the USA at Myeloma Specialty hospitals..

5- I will wait to see what my Dr says after consulting with the Myeloma specialist at City of Hope

6- I will consult with her too at my January 2021 appointment

7- At this time, I am ok with bumping up to a 3 or 4 medication combination that is both pill form and clinic IV, but with stupid Covid, maybe all pill form, but ugh, my poor tummy!!!

8- I hate pain, I am NOT Brave anymore, I want to feel good, I want to be able to live life while in treatment. I just want to do all the "little things" around here Jim and I worked so hard for all our lives. I'm not even asking to go horseback riding any more. But maybe one day I can groom some manes and tails? I am Sick and Tired of being Sick and Tired. I'm so over not feeling well. I cannot stand the constant FATIGUE when not on steroids. Yes, I live in La La Land :))

Here's all my posts from the time I've reflected back on this incredible 11 year journey. Can you believe I've been writing this blog for 11 years now! I need to make this into a book in case Google crashes! Ugh, scary, don't want to jinx it... 

2019



And soooooooooo, the crazy journey continues. I'm amazed, stunned, shocked, increduous, but ready to begin 2021 With a New Stronger Treatment Plan that will Pummel Myeloma's celluar butt! If you have successfully done a treatment I have not, Please Share the Combination with Me! If you have a recommendation of a particular IV, Pill-form chemo, immunotherapy, please Share with Me! I am open to all ideas EXCEPT something that involves HOSPITALIZATION. What my husband Jim went through with the home health care Hospice, was "wonderful" and peaceful, and taught me and my adult kids a lot. Hospitalization right now with stupid Covid, is very very crazy and complex and if "something went wrong", I would pass without my family there... So I'm stickin to out patient chemo and immunotherapy pills and chemo-clinic IV at this time. 
Hospice over Hospitalization is my new mantra :))

Thank you for checking in, reading and commenting about my life story. Means so very much to me! Hoping you and your family are well, happy and ready to get the heck out of 2020 and get to a better 2021! Best Wishes for health, happiness and positive things for all of us in 2021!










4 comments:

  1. Hi Julie, All I can say is ugh, this disease sucks. When I was having issues with finding a drug that worked we tried Bendamustine (Treanda) and it worked really well when other drugs didn't. Perhaps add to your list of questions for Drs in January. Thank you for sharing this. You are strong and amazing. I'm thinking of you. Matt

    ReplyDelete
    Replies
    1. Hi Matt, Happy 2021! Ugh, this life. Hoping 2021 has started out ok for you. I'm now doing Darzalex like you! Along with Pomalyst and Velcade and Dex. Did you ever do that combo? I should probably message you, as I don't know if you'll see this comment. And thanks for the Bendamustine Treanda recommendation. Will have to look that one up. Did it give you yucky side effects, or was tolerable? Hoping you and Leslie are doing well, and we'll get a date on the calendar asap. Let me know when you have an appt with Dr B! xoxo

      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.