The Lion, The Gazelle & The Pesky Myeloma Cell. I can't wait for a cure, can you?

I am really proud of this post because it is a very hard topic to explain (high risk myeloma disease). Plus I am in the video below!

The Lion, the Gazelle & the Pesky Myeloma Cell. High Risk Disease and What to Do About It

By Lizzy on June 3, 2016 Life With Multiple Myeloma, Myeloma 101, Myeloma Crowd Research Initiative

BY LIZZY SMITH for Myeloma Crowd

Every morning in Africa, a gazelle wakes up.
It knows it must run faster than the fastest lion or it will be killed.

Every morning a lion wakes up.
It knows it must outrun the slowest gazelle
or it will starve to death.

Not long ago, I heard Dr Rafael Fonseca of Mayo Clinic in Scottsdale, Arizona use this analogy when describing myeloma cells and, especially, the myeloma cells that survive treatment.

Dr Fonseca said something like this:

The lion knows that he doesn’t need to be the fastest, he just needs to be faster than the slowest gazelle. And, likewise, the gazelle knows that he doesn’t need to be the fastest gazelle in the heard to survive, he just needs to not be the slowest.

And so the contest between the lion and the gazelle begins, which is a lot like the contest we patients wage against bad cells when we discover we have myeloma.

Think of myeloma cells as a big huge heard of gazelles. For this analogy, the gazelles are bad, they are cancer, and we need to kill them.

Think of this heard of gazelles as myeloma cells. They are BAD!

The lion is the treatment being used, like bortezomib or melphalan. The lions are unleashed and they start picking off the gazelles in grand fashion. Lots and lots of gazelles. Even better, doctors unleash a heard of lions by combining drugs, so the lions might be named Bortezomib, Melphalan and Dexamethasone… Together, they are far more powerful than alone.

See these lions? For this analogy, lions are GOOD. They are the medications and treatments used to pick off the bad gazelles. We will name these three lions Bortezomib, Melphalan and Dexamethasone.

And when the lions are done, there are still gazelles left. They are hiding– quiet and undetected. And those gazelles are the smartest, fastest, and wiliest of the bunch. They are also typically the most aggressive, mutated and hardest to find of them all (remember, they survived the lions). Sooner or later, they will breed and be back. This time, we’ll need fresh combinations of lions– new lions who are smarter and faster than those gazelles.

After Bortezomib, Dexamethasone and Melphalan are done, some gazelles survive. And they are the smartest sneakiest, and evilest of the bunch. Sooner or later, they will reproduce and come back in full force, stronger and more resilient.

A new, better arsenal of drugs, therapies or combinations is needed.

Better yet, a cure!

Such is the nature of myeloma, and why myeloma patients who may not begin as “high risk” will eventually have high risk disease as time progresses.

So now what?

And this is why we must find new treatments, better protocols and a cure. The time is now; we cannot wait. The Myeloma Crowd Research Initiative is funding two promising clinical trials that may be cures. These trials are launching now. But in order for these trials to stay on track, we need your help.

What can you do?

• Consider supporting the Myeloma Crowd Research Initiative (MCRI) by starting a fundraising page. It is easy and takes just minutes. Click here to get started. Next, share your fundraising page with family and friends via email, Facebook, Twitter or any other social media you use. Ask them to donate to your page. Small amounts add up fast.
• Make a donation in any amount to the MCRI effort. Simply click here. Or you can mail a check to Myeloma Crowd/CrowdCare Foundation, 3315 Mayflower Ave, Suite 1, Lehi, UT 84043.

The Myeloma Crowd is a registered 501(c)3 non-profit. Tax ID 45-5354811. Your donation is fully tax deductible to the full extent of IRS guidelines.

I am a myeloma patient diagnosed in January 2012. I am 48 years old with two children ages 16 and ten who need me. I want to be here for them, to raise them, to be there for weddings and grandchildren. I have a new husband and a full life ahead of me. I cannot idly wait for someone else to do the work to cure me. I want to speed this process along. My life and the lives of other myeloma patients depend on it.

Please join me in getting involved in our own care. I promise you that it is empowering to know that we can be part of the solution. And, besides, I can’t wait for a cure. Can you?

Read the original article here.

Donate or Build Your Own Fundraising Page

This myeloma warrior starts on new wonder-drug Daratumumab (Darzalex). Crossing fingers & saying prayers

Last summer, I heard of Daratumumab (Darzalex), a potential ground-breaking new wonder drug in treating myeloma. What is Daratumuab?

This is a human CD38-directed monoclonal antibody indicated for the treatment of patients with myeloma who have received at least three prior lines of therapy, including a proteasome inhibitor ( like bortezemib), an immunomodulatory agent (like lenalidomide) or who are double refractory these agents. (www.darzalex.com)

That was me. So when I was told “no”, it wasn’t approved yet, I begged and demanded. To no avail. And with my myeloma numbers growing, we could wait no longer and I had that dang transplant, but first, I started it off in the grandest way I could think of: I went skydiving.



And the next day, I checked myself into the hospital for a really tough process during November and December. And I shaved my hair and lost my eyelashes and eyebrows (not to mention I threw up every day for weeks and weeks, ate no food at all for five days, and lost way to much weight). It pretty much sucked.



Flash forward to today. I am doing well. I went to Nicaragua and Costa Rica for Spring Break. I took a couple trips to Florida and Las Vegas. I’m running/walking again. I bought a bike yesterday. My daughters are out of the school and we’re going to have some amazing times together.



And then…it was time to confront myeloma again. Last week, I had my three-month check-up with Dr. A. We ran the Minimal Residual Disease test and it was positive– 10 myeloma cells per million (just 10! While I wish it were 0, this is still a terrific response, says my doctor). Still in remission, but with those detectable numbers, he was able to convince my insurance company to get me on Daratumumab, which he says is not typically used as a maintenance therapy. Well color me happy, I want it! Anything to give my body the arsenal it needs to FIGHT.



Yesterday, I left the house at 7am for the 45-minute drive up to Huntsman Cancer Institute (plus 15 minutes for a coffee-run) for a 12+ hour day.



The first infusion is a very long one. I had to check myself into a hospital room so I could be monitored closely for any reactions. We accessed my port, drew some labs, and briefly met up with my PA and Dr A. Nearly two hours later, the Daratumumab began. Finally! Fighting cancer is so time consuming!

Was it eventless? No. About 30-minutes into the infusion, I felt a very slight tightening in my throat. We had to suspend the infusion until that went away. The nurse gave me an Ativan because I felt anxious, and more Benadryl via IV. That made me sleep, though not for long! I woke up completely congested. I had never felt anything that intense in my sinuses– total blockage. I felt like my cheeks were going to explode. I also lost my voice, barely able to whisper. They rushed me in some nasal spray. I used up almost half the bottle within maybe 10 minutes. Finally, relief. I fell back asleep for a few hours.

That was the end of the drama. They sped up the rate of infusion and I ate lunch. Then dinner. I watched TV. I wrote a few articles. I did a little shopping on-line. And then I was ready to start climbing the walls. When was the day ever going to end? Turns out, 8pm, almost on the dot. I popped five steroid pills (as part of my regiment, I take five after infusion, and five more the following day). And then my mom and I drove home. A long, grueling, boring day. But worth it!
This regiment will include weekly infusions for three months. After that, it’s bi-weekly infusions, followed by monthly infusions. I am praying hard that this is effective and keeps me in remission for a long time. At least long enough so that Car T Cell Therapy trials are easier to get into. Because that is really what I ultimately want.

So now what?

How can we patients and our supporters make this happen? By contributing to the Myeloma Crowd Research Initiative, which is funding two of those clinical trials. I started a fundraising page (and you can, too, by simply clicking here to get started) and have over $2,500 raised. And I’m not done yet, I’m still working on adding to that amount. Look, I’m not a rich person. I have loads of medical bills and co-pays. I’m on disability through Social Security and my employer’s long term disability insurance plan. But by asking our friends, co-workers, family or whoever to contribute via an email or Facebook post is easy.

One evening, I held a dinner party at my house and invited fellow myeloma warriors that I know and neighbors over. They contributed some money for the dinner (I donated food so all funds went straight to MCRI) and everyone got cool door prizes that I gathered up from local businesses (I just asked the restaurants and carwashes that I frequent for a donation and almost no one turned me down). Last summer, my daughters held a lemonade stand sale. So get creative. Every dollar helps us find what we all want and need: a cure! (Or at least better treatments.)

Daratumumab (Darzalex) Clinical Trials

To find a clinical trial using Daratumumab (Darzalex), click SparkCures link here:
SparkCures Clinical Trial Finder: Daratumumab (Darzalex)

Here's what I learned from joining Muscles for Myeloma (Thanks for the opportunity, Myeloma Crowd!)

My latest via Myeloma Crowd. Enjoy!

Muscles for Myeloma – Here’s What I Learned
BY LIZZY SMITH

 

On Saturday, Salt Lake City’s Muscles for Myeloma Team participated in a 5k. It was a beautiful day and I finished the race! I started off with thousands of others and thought… what if I try to run this thing? I did. And then I walked. For me, it ended up being a run-walk combo. Before getting multiple myeloma, I ran five miles a day. So not being able to run three miles without walking was disappointing. Did I deserve the medal they were handing out post-race? The answer was YES! For heaven’s sake, I completed my third stem cell transplant (yes, THREE) just a few months ago. I was moving and improving, hooray for all of us who do our best. I may still be weak but each day, I’m getting stronger. One day at a time, one step at a time.

 

Leading up to Saturday’s race was about two months of Muscles for Myeloma where I joined my fellow myeloma warriors and supporters from around the country as we vowed to get moving and get fit. Since I was eight weeks from getting discharged from the hospital, just getting to the fitness center was a big goal for me. But I did it most every day, walking the track with my dad, then going to Florida and walking along the beach with my husband. And as the weather improved, power walking through the tulips at the lovely Thanksgiving Point gardens nearby.

 

On Friday night (the day prior to the race), I hosted dinner at my house for our Muscles for Myeloma team, neighbors, and family. It was fabulous getting together with people I love and admire.

 

Here’s what I learned from this experience:

• Local businesses rock! Over the past month, I stopped by restaurants, carwashes and bakeries and asked for donations to use as door prizes at my dinner. I was so touched by their generosity. I gathered up some 45 gift cards and more from the likes of: Harley Davidson Timpanogos in Lindon (they donated a backpack stuffed with goodies), Paradise Bakery (100 cookies for the buffet table), Kneaders, Cubby’s, Mr Hotshine Carwash, Avenue Bakery in American Fork, Culvers and Zaxby’s.  
• Small donations add up. Every person who came to my dinner Friday night made a monetary donation, which totaled over $500 that went straight to the Myeloma Crowd Research Initiative (www.myelomacrowd.org/mcri). These funds are supporting two important clinical trials that just may be our cure!
• “By the yard it’s hard, but by the inch it’s a cinch.” This is one of my dad’s favorite sayings and it is true! Even if you’re not feeling strong or well, try to get a little exercise every day. When I started out, a mile was HARD! But I am improving and can easily walk/run over three miles. I will continue my quest to do a little more and be a little better every day (or at least most days).
• Myeloma warriors are amazing people (and so are those that support us). Cancer is really horrible, but cancer survivors are amazing and I am blessed to meet so many new friends who inspire me.
• Empowerment is possible. Even as a cancer survivor, feeling powerful is possible. I feel it every time I exercise, or raise funds for myeloma research, or learn more about my disease so I’m better able to defeat it. I am not one to sit on the sidelines, I need to do something! And getting involved with the Myeloma Crowd gives me a purpose in life.
• Life can still be awesome, even if one has cancer. I live life in ways that I never did when I was healthy. Each day is a blessing. Each bit of good news is something I celebrate. And as new drugs are approved, new combos are tested, and progress is made, I feel hope.

While the initial Muscles for Myeloma campaign has ended, the program is staying open indefinitely due to popular demand. We have some myeloma friends who are joining summer and fall events and have suggested that fitness is never over. We agree! So far, we’ve raised over $20,000 for the MCRI! Now before we rest on our laurels, let’s keep moving. Let’s keep focused on staying as healthy as possible, combating this disease each day, and finding strength and hope through each other.

 

And if you want to donate, click on my page! Your deduction is tax deductible and will help us CURE Myeloma. The MCRI is funding two clinical trials that may be curative and they are happening now! I promise, it is NOT going into the BIG BLACK hole called "cancer research." You can track this one! Thank you, my dearest supporters.

Read the original article here.

PLEASE sign up for the MCRI 12 Day Challenge! YES, I am BEGGING. Let's cure myeloma now!!!

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BY JENNY A ON OCTOBER 20, 2015MYELOMA CROWD RESEARCH INITIATIVE, MYELOMA NEWS

We have been given a unique opportunity to get together as patients, family, friends and caregivers to raise research dollars and awareness for multiple myeloma through our social media actions.

The 12-Day MCRI Challenge will help each of us take specific actions that will directly impact our own outcome or the outcome of someone we love with multiple myeloma. Through a united team effort, theMCRI 12-Day Challenge will allows us to provide awareness, education, and important research dollars to accelerate a cure.

As the second phase of our Myeloma Crowd Research Initiative fundraising campaign, we’re announcing our inaugural “Can’t Wait for a Cure MCRI 12-Day Challenge,” a campaign that lets YOU take action to help myeloma patients. Takeda Oncology and Signal Genetics have agreed to pay $1 for every social media impression that is associated with one of our challenges. Our goal is to reach over 50,000 impressions in 12 days. We have a short window to take advantage of this opportunity and 100% of this money goes to sponsor the two MCRI myeloma research projects.

Here’s How it Works

1. Register

Starting today, you can register to join the Myeloma Crowd MCRI 12-Day Challenge. We are scheduled to start the challenges on Monday, October 26th. We’ll keep you up-to-date on the daily challenge, track your social media shares and tell you who won the prize of the day. Our goal is to have thousands of people taking action – patients, caregivers, siblings, grandkids, long-lost friends and anyone who knows and loves a myeloma patient!

Register

2. Do the Daily Challenge for 12 Days

Beginning on Monday, October 26th, we will post/email a daily challenge for 12 consecutive days. The challenges are simple: read an article and share it on social media, perform a simple act of service, or learn about a key topic that could change the course of a patient’s care. Do the challenge.

3. Share the Challenge on Social Media

After you’ve finished your daily challenge, please share the challenge link on your social media with the hashtags #discovermyeloma, #mmgenetics and #curemyeloma. Our goal is to get over 50,000 impressions by the end of the 12 days. Don’t worry – once you register we’ll send you a daily email with simple examples you can copy and paste into your social media to share once you’ve completed the challenge.

4. Help Earn Funds for Myeloma Research Through Your Actions

For each action you take, our generous sponsors, Takeda Oncology and Signal Genetics will donate $1 to the Myeloma Crowd Research Initiative. Your small and simple actions will not only educate, but will also bring tens of thousands of dollars to myeloma research!

Our host sponsor Takeda Oncology is donating tens of thousands of dollars to make these challenges meaningful for patients and research. They provide amazing support of myeloma awareness and are a world class supporter of patients and patient advocacy!

Signal Genetics is a participating sponsor and in addition to their donation amount has has granted a FREE MyPRS test ($2900 value) as one of the prizes. Fantastic!

Thanks also to iHeart Media/94.1 KODJ and Dr. Guido Tricot and Dr. Robert Orlowski for their generous donations of tickets and time for our prize locker.

5. Earn Prizes

For each challenge, we will randomly select one winner from the participants of that day’s challenge. You must be registered either through the registration button above or the Time Machine phone app to be included in the raffle for this daily prize. The winner will be announced on the day following the challenge. Additional prizes are also available with the use of the app described below.

If You’re Tech-Savvy

If you, your kids or grandkids are tech-savvy, you can download an app called Time Machine on your smartphone to help you track your activity. Don’t do any of the challenges just yet! We are going to start them together on October 26th maximum impact. Here’s how to use the app:

1. Download the Time Machine App on your phone
   GET TIME MACHINE ON IOSGET TIME MACHINE ON GOOGLE PLAY
2. Find our campaign called “Can’t Wait for a Cure, Myeloma Crowd”
3. Login with Facebook or Twitter. This is how you will share the actions on social media
4. Click on “Do This”
5. When we post the challenge, do it in the app. The app will walk you through the steps to share your action on social media.

Register Today

Join Us and Take Action Today

Please join our united voice to power up our impact and improve outcomes for myeloma patients everywhere. Please share this article with your friends and family and invite them to register and do something meaningful for patients and their families.

For questions about the Time Machine app or the campaign, email us at info@crowdcare.org

Who can wait for a myeloma cure? Not me!

I am so honored and excited to be featured in Myeloma Crowd's video where we answer "Who can wait for a cure? Not me!" It is right here. http://www.myelomacrowd.org/cant-wait-for-a-cure/

The MCRI Is Speeding The Case Of Research

The Myeloma Crowd Research Initiative is now underway. This is the first time that patients have joined together to help find and fund potentially curative research for themselves. Bold? Yes. Needed? Absolutely.

With 1 out of 12 proposed projects actually funded by the National Cancer Institute, bad researchers have long since left the field. Dr. Craig Crews, inventor of carfilzomib, describes it as “cutting into bone” for talented researchers trying to make new discoveries. Young researchers are wary to join a field where they can’t drive to better outcomes for patients, simply because there is no funding.

I can’t sit and wait, can you? To wait for the “standard” process we’ve used for the last 50 years, we will wait patiently for an on-average 10-year cycle to find a new drug. Today, we are thrilled that newer drugs are coming into the clinic for multiple myeloma and are extending life, but none so far are considered to be “curative”. Frankly, I don’t have the time to wait. With a disease that has on average a 4-6 life expectancy, most of us will be gone in that 10 year period if we do nothing.

We have an opportunity before us. With the help of top notch myeloma experts, we have now found two thrilling projects that need our attention and funding. We set out to find solutions for high-risk multiple myeloma. What we found was cutting-edge research that will be effective for high-risk patients but also for low and standard risk patients. These two projects are immunotherapies, or ways to wake up the immune system to fight myeloma. To learn more about these projects, click here.

Patients can’t control everything about their disease, but they can determine how quickly a cure is discovered. While all may not be able to donate to research, we all have family and friends around us who want to see us thrive. Today, you can create your own fundraising page and invite the people who love you to support you by donating to that page. This is a meaningful way they can help  extend your life.

All of the proceeds raised will be donated to these two projects and donors will know exactly how their donation is being applied.

We have donation thank you gifts and prizes for top personal fundraising pages, but our best reward will be to see game-changing research come to the clinic for each of us.

Please join us today to be an agent of change for your own disease.

PLEASE donate! 

Please consider donating to my Myeloma page. Simply click here. Your donation is fully tax deductible. 

Details on MCRI

The Myeloma Crowd Research Initiative has selected two potentially CURATIVE myeloma clinical trials to fund. These trials are happening NOW and are track-able. That means you can watch, participate, and track their progress. Your donation will NOT go into a Big Black Hole of "general donation" never to be heard and scene of again. I am raising funds to help move these exciting projects forward. The very lives of multiple myeloma patients DEPEND ON IT.

We can CURE this blood cancer but I need YOUR help to do this. If you are so inclined, I will be forever grateful for your support. A donation in any amount will help. To donate, simple click here or copy and past this into your browser:
http://mcri.myelomacrowd.org/faf/donorReg/donorPledge.asp?ievent=1115055&lis=1&kntae1115055=9F5BDE4FC91E4BBF8EA1E4840F79CCB1&supId=423004428

Thank you for considering. I love my readers. You inspire me, you give me strength, and your friendship and support means more than you will ever know.

Regardless of your challenges in life, know that we have the internal strength to overcome. It is not always easy, but we are stronger than we can ever fathom. Go.Fight.WIN!!!

Much love,
Lizzy

PLEASE consider donating to my Myeloma page-- Let's find a CURE for this cancer!

Dearest Readers,

I NEVER ask for donations. I have NEVER done a donation page for ANY organization. Not once. I have donated generously, but never have I been the one doing the asking. Until NOW. The Myeloma Crowd Research Initiative has selected two potentially CURATIVE myeloma clinical trials to fund. These trials are happening NOW and are track-able. That means you can watch, participate, and track their progress. Your donation will NOT go into a Big Black Hole of "general donation" never to be heard and scene of again. I am raising funds to help move these exciting projects forward. The very lives of multiple myeloma patients DEPEND ON IT.

We can CURE this blood cancer but I need YOUR help to do this. If you are so inclined, I will be forever grateful for your support. A donation in any amount will help. To donate, simple click here or copy and past this into your browser:
http://mcri.myelomacrowd.org/faf/donorReg/donorPledge.asp?ievent=1115055&lis=1&kntae1115055=9F5BDE4FC91E4BBF8EA1E4840F79CCB1&supId=423004428

Thank you for considering. I love my readers. You inspire me, you give me strength, and your friendship and support means more than you will ever know.

Regardless of your challenges in life, know that we have the internal strength to overcome. It is not always easy, but we are stronger than we can ever fathom. Go.Fight.WIN!!!

Much love,
Lizzy

Why myeloma patients should be getting into clinical trials

A VERY (extremely) important article! We patients MUST be getting into clinical trials. We ought to be DEMANDING it, actually. Here you go!

Clinical Trials, Multiple Myeloma & Why You Should Participate

BY LIZZY SMITH for The Myeloma Crowd

 

I have always thought that clinical trials were for the desperate people, the patients who exhausted all options and for whom little was left. And then I got myeloma. I was given a plethora of options for treating my illness and quickly embarked on a tandem stem cell transplant. Since that rather eventful year in 2012, I have remained active in the cancer community and have done all I can to learn about myeloma, current treatments, and those in the pipeline. One thing I have come to realize is this: Clinical trials are how we patients have been able to survive our disease to this point, and trials are the only way we will find new treatments and a cure. Those who have participated in trials are not guinea pigs, and many had not exhausted their treatment options. I have talked to countless cancer patients who have participated in clinical trials who were were seeking the best and most groundbreaking treatments out there, or were willing to be observed in order to further myeloma innovation. And there were those who had no other choice and were given a new lease on life because of one.

So here is helpful information on clinical trials…

Got questions? We have answers!

There are a lot of myths about joining clinical trials. The Myeloma Crowd has an excellent FAQ that will debunk these myths and answer many of your questions – like who pays for participation, how to find a trial that is right for you, and what to do if you don’t want to continue your participation. To find the FAQ, click here.

Sparkcures: Our absolute favorite place to search for myeloma-specific trials! (It is super easy) 

I have discovered first-hand how challenging it can be to find a trial that may be appropriate for the patient. One would think that oncologists are up-to-date and can find the perfect clinical trial for you but that is rarely the case. We patients (and, hopefully, our caregivers) must be our own advocates and when it comes to finding a clinical trial, this is definitely the case. Doing this research hasn’t been easy, at least not for me. Much of what I can search online has been difficult to sift through or understand. And then there came this resource: Sparkcures. Honestly, it’s the easiest database I have ever discovered for myeloma. You can customize your search in a snap. So far, I have found a trial I am very interested in getting into and I will be discussing this with my doctor on Friday. I want access to Daratumumab!

Personal stories & reasons to participate

I also love these articles from The Myeloma Crowd about clinical trials:

• Myeloma patient Joel Wharton on Living With Intention and My Choice for a Clinical Trial
• An interview with myeloma patient Stacy Erholtz who participate in the measles vaccine clinical trial
• 10 Reasons to Participate in a Clinical Trial
• Dr. Don Benson on our most popular show – why patients should join a clinical trial.

MCRI: We are funding a very promising trial

Dr. Ivan Borrello, MD, PhD of the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, is working to create a patient-specific immunotherapy using enhanced T cells from the patient’s own bone marrow, for truly personalized medicine. He has found the marrow infiltrating lymphocytes (MILs) inside of the bone marrow to be more indicative of a patient’s disease rather than taking a blood sample.

“Several years ago we did experiments where we took blood and bone marrow from patients and we activated these cells with beads in the laboratory and showed that upon activation there was no increase in tumor specificity or tumor recognition of the cells that were derived from the blood whereas, in contrast, the bone marrow cells or the MILs from the patients had roughly a 100-fold increase in tumor specificity,” says Dr. Borrello.

The higher the specificity, the higher the chance a patient has of going into remission. After he extracts T cells from the bone marrow in an individual patient (similar to a bone marrow biopsy), he expands them a hundredfold outside of the body in the presence of the tumor cells, which help them recognize which targets to hit when given back. Three to four days after autologous transplant, he gives them back to the patient. When they are re-introduced, they target the hundreds of proteins that could be causing tumor growth for that patient, not just a single protein. This is an open clinical trial today for patients with high-risk genetic features. Compared to CAR T Cells, this approach targets hundreds of proteins versus one or two and limits the “immune escape” that can occur in the CAR T cell approach.

By targeting the specific disease-causing proteins in each patient, Dr. Borrello hopes “that the likelihood of such antigen escape variance are potentially significantly less.” The treatment is used in conjunction with autologous transplant to take advantage of the time where the transplant takes a patient’s lymphocyte count down to zero. The body automatically tries to repopulate these counts, giving the new, enhanced T cells a chance to expand twice– once in the lab and then again as part of the natural growth that occurs after stem cell transplant.

In the future, the treatment may be successful with high-dose chemo but not as high as transplant requires. The side effects of the treatment have been minimal, especially compared to the CAR T Cell potential effects. This third clinical study is now open is for high-risk genetic feature patients who have not yet had stem cell transplant but they can have had other prior therapies. The study uses lenalidomide as follow-up treatment because it has anti-myeloma properties as well as immune system boosting properties.

To learn more about this important project, read or listen to the Myeloma Crowd Radio Interview with Dr. Borrello.

To learn more about the clinical trial or how you can participate, click here.

To find out how you can support this important clinical trial and MCRI’s efforts to fund it, click here.

We patients have power

You don’t need to be a superstar oncologist to further the advancements in myeloma. You can participate in a clinical trial, which will give you access to potentially the current or best medications and treatments out there. It is a win-win.

(Note: If I get into a trial, I promise to share!)

To access the original article, click here.

Bill Conley and I are featured in this month's Utah Cancer Connections magazine for our work in raising funds to cure multiple myeloma!

Local Candidate Bill Conley Aims To Raise Funds To Cure Multiple Myeloma While Building A Stronger Community 

From The Myeloma Crowd 

 

We are excited to be featured in this month’s Cancer Connections magazine (page 15). This is an excellent example of how patients and caregivers can help support the Multiple Myeloma Research Initiative (MCRI) while having fun doing it. Creative? We say yes!

 

Bill Conley, candidate for Lehi City Council, was campaigning one hot morning. Just weeks earlier, he had decided to walk every major neighborhood in the city before Election Day meeting residents and business owners. On this particular walk, his fiancé, Lizzy, was at Huntsman Cancer Institute for her monthly doctor’s visit and labs. She was diagnosed with multiple myeloma in January 2012 and, though doing well, there is no cure. This means endless monitoring, infusions, and exams. He began wondering how he could support her cancer battle in a bigger way while also campaigning.

An idea was born that included long walks, lemonade stands, donations and talking. All right up his alley.

“I have owned several businesses in my past professional career,” says Bill. “My success involved thinking outside the box coupled with a willingness to talk to people.”

Lizzy was already working with a fellow myeloma survivor, Jenny Ahlstrom, on launching and growing the Myeloma Crowd (www.myelomacrowd.org), a patient-driven web site with information for the myeloma community, tips for navigating treatment, and new medications and treatments available to patients. In addition, Jenny and Lizzy helped launch the Myeloma Crowd Research Initiative (MCRI), which aims to find a cure for the disease. In August, they will begin crowdsource funding to sponsor a potentially curative clinical trial.

“What makes the Myeloma Crowd Research Initiative unique is that it is happening now, totally transparent, and its progress is trackable,” says Lizzy. “Typically, cancer research donations go into a big bucket and donors have almost no way of knowing if their generosity makes any difference. But the MCRI is potentially a game-changer. We want a cure now. As a patient, I am not satisfied with hoping someone else cures me. I need to be part of finding that solution.”

It wasn’t long before Lizzy and Bill were walking neighborhoods together wearing neon T-shirts (the front is a large Myeloma Crowd logo, the back a Vote Bill Conley for Lehi City Council message) and talking to residents about cancer and Bill’s campaign. Lizzy also put her two daughters to work– nine-year old Siena and 15-year old Morgan. They designed posters and began running lemonade and cookie stands on select walks. The snacks are free but they accept donations for cancer research. Additionally, they can also be seen around town wearing those T-shirts. This effort is a family affair. Lizzy’s dad even joined them on a walk.

“I will be a dedicated and tireless member of the Lehi City Council if elected,” says Bill. “I live in Lehi and have a vested interest in making this city an amazing place to live. But all funds raised go straight to the Myeloma Crowd Research Initiative. Not one single penny goes to my campaign. We are doing this for the right reasons—to make a difference in the world.”

On lemonade stands, raising funds for myeloma & running for Lehi City Council

Our Lemonade Stand Fundraiser for MCRI: A Family Affair                  

BY LIZZY SMITH for www.myelomacrowd.org

I tend to keep my daughters very busy during summer months. So in addition to travel plans (we just got back from a very fun road trip to Seattle and Canada, and we are leaving for Florida in two weeks), camps, and lots of physical activities, Bill and I decide that they should also learn a bit about giving back to their community. What better way to do this than raise fund for the Myeloma Crowd Research Initiative (MCRI)?

So we have planned a series of lemonade and cookie stands in our neighboring town, Lehi, Utah. Bill is running for Lehi City Council  and has vowed to walk every major neighborhood in the city before Election Day meeting residents and business owners. He ordered up neon T-shirts with one side the Myeloma Crowd logo and the other a Vote Bill Conley Lehi City Council. I often join him on these walks and we are impossible to ignore. On one particular evening, we started off Bill’s walk with our lemonade and cookie stand. We raise $70 for my personal MCRI fundraising page!

Here’s how we did it:

1. My two daughters, 15-year old Morgan and 9-year old Siena, baked cookies the day prior. We kept it simple, buying ready-made cookie dough.

2. On the day of our event, we loaded up our car with a five gallon water bucket filled with lemonade, cups, our cookies, a table and signs that we were raising funds for cancer research.

3. While Siena and her two friends managed the donation table, Bill, my parents and I held up signs for Bill’s candidacy and the fundraiser.

We are hosting another lemonade stand next week on the same evening of a “Meet the Candidates” night. Since Bill will be at this event, we’ll set up across the street an hour prior and when we are done, attend Bill’s event and meet Lehi residents and discuss Lehi issues.

This is a fun activity that is also a family event. We all have a vested interest in helping find a cure for myeloma, after all. It is teaching my children some important lessons about what it means to do something selfless, and we have fun together doing it.

Consider doing something fun with your family and raising money for MCRI. For ideas to get you started, click here. Share with us your family activities or fundraising efforts at info@myelomacrowd.org.

MCRI Radio Show: Let's CURE myeloma! CAR T cells may just be the way to do it. Tune in Weds, May 27 11A CST

Tune in to Wednesday's Myeloma Crowd Research Initiative's show! This project could be a CURE for multiple myeloma! Let's WIN this battle. I think we are SO close. From www.myelomacrowd.org.
   

Our Next Show: The power of CAR T cells in Multiple Myeloma with Dr. Einsele and Hudecek, University of Würzburg, Wednesday, May 27 @ 11 CST

Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer

CAR T cells are a hot topic in multiple myeloma as an extremely powerful and potentially curative therapy. It is a highly personalized treatment because the patient’s own T-cells are redirected to eliminate cancerous cells using a targeted protein found on the myeloma cells. Learn what Dr. Hermann Einsele, MD and Dr. Michael Hudecek, MD are doing with CAR T cells to target the CS1 protein, commonly found on myeloma cells. 

Hermann Einsele, MD, is Professor of Internal Medicine and Director of the Department of Internal Medicine at the University of  Würzburg in Germany. Following his medical training at the Universities of Tubingen, Manchester, London and Seattle, he became a research fellow in the Department of Hematology/Oncology/Rheumatology/Immunology at the University of Tubingen, Germany. He was board certified in internal medicine in 1991 and became Assistant Professor in 1992. In 1996, he was board certified in hematology/oncology. He is a Visiting Professor at the Fred-Hutchinson-Cancer-Research-Center in Seattle, USA and the City of Hope Hospital, Duarte, USA.

Professor Einsele is a member of the American Society of Hematology, the European Group for Blood and Marrow Transplantation (EBMT), and the EBMT working parties for Infectious Disease and Immunobiology. He is currently a member of the board of the German Society of Blood and Marrow Stem Cell Transplantation. In 1999, he became Chairman of the German Study Group Multiple Myeloma. In 2003, he received the van Bekkum-Award of the European Society of Blood and Marrow Transplantation. He has published > 350 articles in peer-reviewed journals. His research interests include multiple myeloma, stem cell transplantation and adoptive immunotherapy. He is a member of the board of the German Lymphoma Group. In April 2011 he was elected Honorary Fellowship of the Royal College of Pathologists (London).

Dr. Michael Hudecek, MD,  leads the CAR T cell lab work at the University ofWürzburg. Dr. Hudecek obtained his MD with summa cum laude from the University of Leipzig, Germany, and performed his post-doctoral research fellowship at the Fred Hutchinson Cancer Research Center in Seattle, WA, USA. Dr. Hudecek joined the University of Würzburg in 2012 as a clinical fellow and research group leader.

MCRI Radio Show - The next in our series. Let's find that cure for myeloma!

This past week, I met a woman on Twitter who lives in Salt Lake City and is heading into her first stem cell transplant. Another myeloma warrior in my neighborhood. I'm going to visit her on Sunday. I also found another woman on Facebook who is in Salt Lake City living with multiple myeloma. I just picked up Tom Brokaw's book where he talks about his multiple myeloma diagnosis and fight to get well. Is it me or does it seem like way too many people (growing numbers) are affected by multiple myeloma? So my response? Let's find that cure-- especially for high risk disease. And regardless of how aggressive myeloma starts out as, as time progresses, it will eventually become high risk if it isn't already. Because those pesky myeloma cells are wily and smart. But we can be smarter and stomp it out.

Here's the latest upcoming radio show in which my fellow myeloma warrior, Jenny Ahlstrom, is interviewing doctors who are on a quest to either cure myeloma or take one huge step forward in making it a permanently manageable disease. Join me in tuning in. And learn more by visiting www.myelomacrowd.org/mcri or www.myelomacrowd.org.

Myeloma Crowd's MCRI Radio Show - Which multiple myeloma cells are evading treatment? Learn more from Dr. Gareth Morgan, Dr. Niels Weinhold and Dr. Christoph Heuck from UAMS this Monday @ 11 am CST

Monday, May 18,  9 am PST, 10 am MST, 11 am CST, Noon EST
Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer

Which myeloma cells are the most aggressive and resistant to treatment? Drs. Morgan, Weinhold and Heuck seek to understand where the most aggressive clones are coming from. Is it from clones that adapt the best to the bone marrow environment? Research is showing that patients with several different types of myeloma cells at diagnosis seem to have early relapse and shorter survival while patients with one dominant type of myeloma cell tend to do better.  Learn what the team is doing to find out which clones are the most aggressive and which therapies could actually induce stress and increase the mutation rate, leading to a more resistant myeloma clone.

Gareth Morgan, M.D. FRCP, FRCPath, Ph.D, Professor of Medicine, is the Director of the Myeloma Institute at UAMS.  He is also the deputy director of the Winthrop P. Rockefeller Cancer Institute at UAMS.  Dr. Morgan came to UAMS from The Royal Marsden NHS Foundation Trust and The Institute of Cancer Research in London where he was a Professor of Haematology and Director of the Centre for Myeloma Research.

Dr. Morgan is an internationally recognized clinician scientist who works in the field of molecular genetics of blood cell cancers, in particular, multiple myeloma.  He is specifically interested in how this knowledge can improve the treatment of cancer.

Before coming to the Myeloma Institute, Dr. Morgan served as a professor of Hematology and director of the Centre for Myeloma Research at the Royal Marsden NHS Foundation Trust and The Institute of Cancer Research in London, Europe’s largest comprehensive cancer institute. He is also a founding director of the European Myeloma Network and has authored more than 450 peer-reviewed journals.

Dr. Niels Weinhold, PhD is Research Assistant Professor at UAMS. His field of study includes the genetics of multiple myeloma, minimal residual disease, and diagnostics in multiple myeloma. Prior to his coming to UAMS he was a Postdoctoral Fellow in the Department of Internal Medicine at the University of Heidelberg, in Germany.

Dr. Christoph Heuck, MD, is Assistant Professor of Medicine at the Myeloma Institute for Research & Therapy.  He completed a hematology/oncology fellowship at Montefiore Medical Center and an Internal Medicine residency at Jacobi Medical Center, both in New York. Dr. Heuck is board certified by the American Board of Internal Medicine. He received his medical degree in 2003 from Humboldt University in Berlin, graduating magna cum laude.

Dr. Heuck has conducted research related to molecular genetics of multiple myeloma and other cancers.  He is board certified in Internal Medicine and board eligible in Hematology and Oncology.  Dr. Heuck is a member of the American College of Physicians, American Medical Association, American Society of Clinical Oncologists and American Society of Hematology.

MCRI's next show: Weds, May 13, 1PM EST. Let's find a cure for myeloma!

I'm on the board of the Myeloma Research Initiative (MCRI), one of the coolest projects ever and one in which we may find (relatively soon) a REAL cure for myeloma, high risk myeloma. Who wants to donate money to cancer research where you don't know where it's going, what it's done, or the timeline? What I as a donor want is real, tangible progress, results, and something reportable and transparent. That's what MCRI is doing. We are on a quest to pick a project or two that show the greatest potential for a cure-- like a cure in the near future, not a jillion years away. And the really great news is that I'm not picking the project-- myeloma doctors and specialists are. I'm helping with communicating this amazing, important, groundbreaking, potentially game-changing initiative. Anyway, here is one potential study that may receive MCRI support. So read up and listen in if you can. Catch you on Wednesday's show!

Myeloma Crowd Research Initiative (MCRI) Next Show: A potential cure for 14;16 multiple myeloma using a PIM2 Kinase Inhibitor with Dr. Carmen Baldino, PhD and Dr. Kelvin Lee, MD, Wednesday, May 13 @ 1 pm EST

Wednesday, May 13,  10 am PST, 11 am MST, Noon CST, 1 pm EST
Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer

The 14;16 translocation is a high-risk feature in multiple myeloma patients. Through the work of Dr. Carmen Baldino, PhD, scientific founder of Jasco Pharmaceuticals and Dr. Kelvin Lee, MD of Roswell Park Cancer Institute, a new drug has been developed that may be potentially curative for these patients. In this 7th show for the Myeloma Crowd Research Initiative, we interview Drs. Baldino and Lee to learn more about this important drug now in development.

Dr. Baldino is a scientific co-founder of Jasco Pharmaceuticals, LLC and the company’s President. Prior to joining Jasco, Dr. Baldino was one of the scientific founders of China based BioDuro, LLC, an integrated R&D services company, and served as its Vice President of Research and Business Development. Dr. Baldino also spent ten years at ArQule, Inc., most recently as Vice President of Chemistry, managing a group of scientists responsible for early discovery technologies, medicinal chemistry, and analytical chemistry. Dr. Baldino obtained his B.S. in Chemistry from Southern Connecticut State University (1987), Ph.D. from Purdue University & the Scripps Research Institute (1993) with Professor Dale L. Boger, and completed a post-doctoral fellowship at Yale University with Professor Harry H. Wasserman. Dr. Baldino’s academic research focused on the total synthesis of natural products and bioorganic chemistry.

Dr. Kelvin Lee is Professor of Medicine at the Roswell Park Cancer Institute as well as Vice Chair of Medicine and Chair of Immunology. His laboratory has a long-standing interest and publication record in multiple myeloma, being the first to characterize CD28’s pro-survival function in myeloma. In his lab he also studies the bone marrow microenvironment and other survival proteins.

To learn more, visit www.myelomacrowd.org/mcri