Feed on
Posts
Comments

“Open collaboration is critical for driving innovation…” – Open Source Quote

This video hit the MM community as I was traveling for a long awaited cruise celebrating 30 years of marriage with my husband Dave, who has MM. It has taken me awhile to finally get it up here for those of you that might have missed all the hullabaloo. But if you want to see the follow up on this, there is no place better than the illustrious, long time smoldering myeloma patient who lives in Italy, drum roll… Margaret (of course!). Read here!

But first, watch this. What struck me as THE MOST IMPORTANT feature in this, is not whether years from now it will pan out for us or not, but the paradigm shift of a researcher opting to do it as Open Source. THIS IS HUGE! If we can get more of our researchers opting to do this we might make progress much faster. MMRF founder, Kathy Guitsi, was instrumental in the formation of her work to demand sharing of tissue from ALL participating and making it impossible for them to say no. Slowly, people are making a difference and breaking down the old barriers that kept progress slow and arduous. Keeping everyone’s eye on the ultimate prize, which is the answer to the puzzle, and the saving of lives.

Just click on the Ted Talk photo in the event you don’t see a play button. It’s there.

I think… I’m just about caught up now on important posts. Thank you for your gracious patience as I was off galavanting doing other things and preparing for the holidays!

 

“Elderly patients with multiple myeloma strive for upfront therapy that will extend their lives,” said Karen Ferrante, M.D., Chief Medical Officer, Millennium. “Today’s VELCADE data confirmed the sustained clinical benefits, including overall survival and complete response that VELCADE provided in patients with previously untreated MM.”

Peter, a member of the MM ListServ (moderated by Beth Morgan), sent me this announcement and we were waiting for the OK to publish. Then the holidays, my excessive traveling of late, and an opportunity to actually read it, delayed me in getting up here. It is good news for the elderly patient, whose treatment options are sometimes limited by their age and overall condition to venture down some of the more aggressive paths. And of course, whenever we make breakthroughs in this group and in the high risk groups, it is good news for us all.

Millennium Press Release

Thank you Peter for asking me to put this up.

“Somewhere, something incredible is waiting to be known.” – Carl Sagan

 

Rajkumar tackles defining “cure”. 

A five part video series Discussing the topic “Is Myeloma Curable” were Bart Barlogie, M.D., Ph.D., director of the UAMS Myeloma Institute for Research and Therapy and professor of medicine in the UAMS College of Medicine, and S. Vincent Rajkumar, M.D., professor of medicine at the Mayo Clinic in Rochester, Minn.

I haven’t watched them all yet, but I’m sure it will be quite informative.

Ok, I’ve watched them all and if you can suffer through the patient example and some of the more technical aspects, you will indeed enjoy the debate, the humor and the admiration these two physicians and researchers have for one another. They are closer in agreement than you would expect. Just different schools of thought and approaches. These debates are incredibly valuable as we push forward in finding some measure of “cure” in multiple myeloma. It helps to shape where the research is going and as we find answers, how we can improve now the QOL of the patient. It’s not enough to survive it. We want to also THRIVE. We don’t ask for much. 🙂

I like very much that we have Rajkumar beating the drum for QOL, though I have sometimes not agreed with his blanket statements, without definition, of QOL. I think it can be as individual as the disease, but I’m very happy that he has focused his attention on this. Then I like that Barlogie is relentless on pushing the envelope in order to attain a sustainable complete response in patients that has durability which makes it worth our personal efforts to go through treatment. Being a trekkie fan, “bravely going where no man has gone before!”

They are both right.

 

 

UAMS/MIRT News

Our Mission: “To accelerate curative therapies for multiple myeloma and related disease entities through innovative translational research and outstanding patient care.” – Myeloma Institute for Research and Therapy

Myeloma Institute doctors presented research findings at the annual meeting of the American Society of Hematology (ASH), December 10-13. You can view ASH Abstracts at http://ash.confex.com/ash/2011/webprogram/start.html (search by “Barlogie”).

Onyx Therapeutics, Inc. has awarded $1 million over a two year period to Dr. Saad Usmani, Director of Developmental Therapeutics at the Myeloma Institute, for collaborative research studies, with specific focus on the Institute’s Total Therapy 5B and Total Therapy 7 protocols.

The Myeloma Institute announces the recent departure of John D. Shaughnessy, Jr., Ph.D., Director of Basic Research.  After nearly 14 years with the Myeloma Institute, Dr. Shaughnessy has assumed a full-time position in the private sector with Signal Genetics to pursue development of targeted medications and treatments for multiple myeloma.


“Information is not knowledge.” – Albert Einstein

I have noticed there are those who are very knowledgable about Multiple Myeloma and there are those who have information, and then there are those who have a very superficial understanding. I have also noticed that sometimes it’s the patient, sometimes the caregiver, but rarely is it both who have a pretty good understanding of the basics and beyond. I have also noticed that some, either with information or knowledge, get annoyed with those that can’t keep up. Like it’s a crime. And even those who challenge their doctors assessment of the reports, continually. Continue Reading »

Study Hacks Blog

“Adversity has the effect of eliciting talents which, in prosperous circumstances, would have lain dormant.” – Horace 65-68 B.C. 

I have subscribed to a blog called Study Hacks for some years now. I’m a HUGE fan. This author doesn’t blog every day or even every week. But when he does, it is a turn your thinking on it’s head sort of experience. In a really good way. I have spread his blog around to many of my friends who have young children or kids getting ready for, or even in college. He writes it for the college kid, but really, for parents, it is a wonderful thing to read and rethink the cliches that pop out of our mouth. Things like, “find your passion and you’ll be happy” and so on. Continue Reading »

Contact Form

I have finally put a “Contact” tab up (across the top). This will allow some of you who might not feel comfortable leaving your comments to send me a message privately and more easily.

 

Book in the Works?

“Physical strength is measured by what we can carry; spiritual by what we can bear.” – Unknown

When I started this blog, it was partly my own very personal need to heal from my experience of moving from sheer terror to triumphant regaining of our life. Albeit a different life than the one we had, but in many ways, much richer. A common occurrence with those on the cancer journey.

Continue Reading »

“New and wonderful, ‘Myeloma Blessings’ came into my life last night!” – Lori Puente

Wow! I have come to embrace and truly LOVE the chance encounters I have in my daily life. It’s almost as if, “who or what will come into my life today?” Will they be for me? Or will I be for them? Or even better, for each other. Yesterday it was the latter. Continue Reading »

Holidays

Just as a puppy can be more of a challenge than a gift, so too can the holidays.” – John Clayton

The holidays can be both joyful and stressful.

When Dave and I were in Arkansas for the beginnings of his Tandem SCTs protocol… from Thanksgiving through New Year’s, it could have been a pity party. Continue Reading »

Kentucky

If you look thru the windows you will see the paddocks (click to enlarge)

“Paula is one of the gifts my mother left for me before she died.” – Lori

I’m off for my annual trip to Lexington, KY to visit my dear friend Paula at her place, “Rosehaven”.

This annual trip started the year before my mother’s death, with the invitation for my then 10 year old daughter to compete in the invitational diving meet at UK Lexington.

Continue Reading »

My Studio

“I get satisfaction of three kinds. One is creating something, one is being paid for it and one is the feeling that I haven’t just been sitting on my ass all afternoon.” – William F. Buckley, Jr.

The problem with weaving is it can be very sedentary. I’m working on trying to get out for a walk/run in the mornings before I get started each day. So far I’m not!!!! Continue Reading »


Bruce & Dave @ dinner October '11

“I wouldn’t be alive except for you and Nick!” – Bruce Bertsche

“No… it’s because your wife Jan called me.” – Lori 

This was the cute little banter Bruce and I would have from time to time when others were around and he would tell them of his story and how he got to Arkansas for treatment of his Multiple Myeloma.

Continue Reading »

Oasis of the Seas, Labadee, Haiti

“It’s true, sometimes, when you’ve had a difficult day, or met difficult people, or been let down, disappointed, or heartbroken, it’s easy to completely forget the most important thing of all… You’re alive.” – Notes from the Universe (Mike Dooley)

The quote doesn’t depict my mood, it came into me today and it conveys what I often feel is the attitude of those of us who have been dramatically touched by cancer. We sort of get a “reality adjustment” if you will and I often think we have discovered the secret to life. Experiences, things, people, get all shuffled up and reorganized in our life. For the most part, I would have to say for us, it’s been a good thing. So….. Continue Reading »

Celebratory Cruise

“If there is such a thing as a good marriage, it is because it resembles friendship rather than love.” – Michel de Montaigne

Dave and I have been married 30 years this year. As I have written in the past, we really stink at celebrating our anniversary and even our birthdays are a struggle. Last year on our 29th, we both forgot, completely. It’s better if you both forget than just one, trust me. Anyway, Continue Reading »

Click to access article (Page 22)

“What is most important is that we are both fighting in our own way for what we believe.” Leola Dublin Macmillan (my friend)

You know I like to share “other things” here on my blog. I can’t help it, it’s my life. What I love most about it (my life), is all the amazing people I have met. My experiences, good and bad, and the lessons and joys that come from each and every one of them. Some might find it a curse, but I just love profoundly, the life journey of others I get to cross paths with briefly or intimately along my own meanderings through life. And… I like to share. Continue Reading »

“Research is formalized curiosity. It is poking and prying with a purpose.” – Zora Neale Hurston

Cancer expert Kenneth C. Anderson, MD, from Dana-Farber Cancer Institute discusses bone marrow transplantation techniques and other related therapies used for treating multiple myeloma in this video from the National Comprehensive Cancer Network (NCCN), a not-for-profit alliance of 21 of the world’s leading cancer centers dedicated to improving the quality and effectiveness of care for cancer patients. For more information on multiple myeloma and other cancers, including the NCCN Guidelines for Patients, visit www.NCCN.com.

 


 

Todd Taylor Wines

“Even more importantly, it’s wine, food and the arts. Incorporating those three enhances the quality of life.” – Robert Mondavi

It has been a whirlwind for me after returning from Little Rock on Friday, well, Saturday morning Little Rock time! Busy preparing scarves for the upcoming “Weaving at the Winery”  (photos of our practice run) event this Saturday at the “Old Sugar Mill” in Clarksburg, CA, just outside of Sacramento. Continue Reading »

One of my own photos taken in SF on the street. 🙂

“Gratitude is an art of painting an adversity into a lovely picture.”  – Kak Sri

It is not an easy task to find something good in the middle of a cancer diagnosis. As you travel down this path for a while, trust me, you will indeed find new and wonderful things. Hang in there. Here is a little something to brighten your day. (The first 1/2 is him telling you who he is and what he does. The second half is a new project he has been working on… about 10 minutes of your valuable time.)

Louie Schwartzberg is an award-winning cinematographer, director, and producer whose notable career spans more than three decades providing breathtaking imagery for feature films, television shows, documentaries and commercials.

As a visual artist, Louie has created some of the most iconic and memorable film moments of our time. He is an innovator in the world of time-lapse, nature, aerial and “slice-of-life” photography – the only cinematographer in the world who has literally been shooting 24 hours a day, 7 days a week continuously for more than 30 years.

 

“Be careful about reading health books. You may die of a misprint.” – Mark Twain

Margaret over at Margaret’s Corner has written a small article clearing up the differences between Tumeric and Cucurmin when used for improving one’s health situation, which are often used interchangeably (by me as well!). She presented it in response to an article written on Steve Job’s recent death.

Margaret is considered by many of us THE SOURCE of information in this area and has successfully kept her myeloma from progressing into the stages where she would need medical intervention. I admire her tenacity and footnoting of sources used in her posts. Go have a read here.

And check out her later post on Quercetin. You should definitely keep Margaret on your list of blogs to follow, no matter where you are in your Myeloma journey. 

 

« Newer Posts - Older Posts »

Show Buttons
Hide Buttons