Wednesday, February 24, 2016

LLS Southern California Blood Cancer Conference March 19

The Southern California Chapter of the Leukemia and Lymphoma Society's annual blood cancer conference is scheduled for March 19 in Anaheim, California. It's important to note that the LLS's focus include Multiple Myeloma, even though it's not in the name. Someday this will be fixed.

Nonetheless it's a good conference and there are sessions on myeloma. The conference is free.There will be various tables and booths, including a table for the LLS First Connection program, which matches newly diagnosed patients with experienced patients. It's a great program that I wish I knew about when I was diagnosed. Speaking with experienced patients can help alleviate some of the fears and concerns that come with a diagnosis. And I'm not just saying that because I'm a First Connection volunteer and will be at the table the morning of the conference.

Here's the link to the conference information and registration.

LLS Blood Cancer Conference

Myeloma Crowd interview with Dr. Berenson

The Myeloma Crowd is a patient-driven initiative to help educate and support multiple myeloma patients.The goal is to simplify complex information and arm patients with important and current information about myeloma in order to help them obtain optimal outcomes.
The Myeloma Crowd and CrowdCare Foundation were created by myeloma patient Jenny Ahlstrom. The Myeloma Crowd now features a wealth of content contributed by other myeloma survivors including Lizzy Smith, Gary Petersen and other patient contributors.
Myeloma Crowd recently interviewed my doctor, Dr Berenson, to talk about myeloma, his treatment philosphy, and an important new test, BCMA, for tracking patients and potential outcomes.The interview is about an hour long, but is absolutely worth a listen. Berenson takes a different path than other myeloma specialists and his positive results in treating patients is among the best.Gary Peterson is a myeloma patient and maintains a terrific website that tracks survival rates for myeloma specialist and hospitals. Here is a link to his website.  

Myeloma Survival
With regard to this interview, multiple myeloma is typically tracked by measuring the M-protein, also called the "M-spike." But in some patients, the M-protein gets lost, making it difficult if not impossible to detect myeloma levels without a bone marrow biopsy. Dr. James R. Berenson, MD of the Institute for Myeloma & Bone Cancer Research has been working on a new test (assay) and has found direct correlations between levels of BCMA and the M-spike. He also has identified new clues that BCMA levels can provide related to outcomes within specific patient populations. Learn more in this show about a new and potentially easier way to detect myeloma, which would be incredibly valuable for the non-secretor. (Note I don't have an M-spike and I am kidney impaired, so each visit to Berenson I give research blood for BCMA tracking. I'm currently on his maintenance regimen which he discusses towards the end of the interview) 
Here is the link to the interview: 

Berenson and BCMA
 

Wednesday, February 17, 2016

Coming Soon..Brackets Against Myeloma

We're inching closer to March Madness time....College Basketball Tournament...Brackets. For the past 2 years, I've used the brackets and March Madness as a fund raiser.  Two years ago I raised money for the MMRF. Last year it was the LLS. This year I'm raising funds for the Institute of Myeloma and Bone Cancer Research. This is Berenson's non-profit research group.


I've averaged right around 100 participants. This year I'm aiming for 200. It's simple. $20 buy in per bracket. (You can do more than one). Half the funds go into our winner's pot, the other half gets donated. Definitely win win.


We're about a month away from the official bracket announcements. But for now I wanted to remind folks that this is coming up. Spread the word.

Monday, February 15, 2016

Patient Legal Handbook

 
The Cancer Legal Resource Center is proud to announce its newly published PatientLegal Handbook. This handbook is a resource for patients coping with cancer and provides valuable information about cancer-related legal issues that touch patients all the way from diagnosis through survivorship. This handbook is part of a project funded by Amgen'sBreakaway from Cancer program, a national initiative to increase awareness of important resources available to people affected by cancer -- from prevention through survivorship. The CLRC's new Patient Legal Handbook is also available in Spanish as InstructivoLegal del Paciente.  



About the CLRC
The Cancer Legal Resource Center (CLRC) is a national program of the DisabilityRights Legal Center. The CLRC provides free and confidential information and resources on cancer-related legal issues to cancer survivors, caregivers, healthcare professionals, employers, and others coping with cancer.  Visit www.CancerLegalResourceCenter.org for more information about cancer-related legal issues and services provided by the Cancer Legal Resource Center.
 
Contact the CLRC:
Telephone Assistance Line: (866) 843-2572
Fax: (213) 487-2106

Friday, February 12, 2016

Cure Talk Tuesday Feb 16

Everything you need to know about Daratumumab and Multiple Myeloma

FDA recently approved daratumumab (Darzalex) to treat patients with multiple myeloma who have received at least three prior treatments. Daratumumab is the first monoclonal antibody approved for treating myeloma and provides another treatment option for patients who have become resistant to other therapies. Our myeloma panel is talking to the father of daratumumab, Dr. Torben Plesner, on the use of this drug in treating multiple myeloma.




Register at: http://www.curetalks.com/event/rsvp/Everything-you-need-to-know-about-Daratumumab-and-Multiple-Myeloma/248/?upcoming=yes

Thursday, February 11, 2016

Rest In Peace Pat Killingsworth

"Feel good and keep smiling". This was Pat's sign off on every post in his blog. On Monday from the hospital, Pat wrote a post titled "I'm not dead yet".   This is what he wrote in that post:

The commonly used name here for plasmapheresis is plasma exchange. I'm being hooked up for my third, three hour round of plasma exchange. Honestly, I’m in pretty bad shape.
I’m not eating. I could give you a lot of technical information about my situation, but the bottom line is this: Five doctors and none can figure out whats’ wrong with me. Just passed out, woke up with laptop on top of me.
Your prayers and positive energy isn’t in vain. I feel it. So does Pattie. Thank you!
Feel good and keep smiling! Pat

Today, February 11, 2016 was Pat's 60th birthday. Pattie, Pat's wife, brought some of his favorite things to the hospital today. Today Pat also got his wings. Pat was diagnosed in 2007. From that point on, he devoted his life to helping other myeloma patients. He was a vocal and strong advocate.  When I was first diagnosed, like so many others, I was lost and scared. Pat was the first patient I discovered who I could relate to. He was always positive, but also very clear on his fate. After knowing Pat through social media, emails and conference calls, I met Pat and Gary Peterson in person a couple of years ago. They were quite a dynamic duo. Over the past years, I've gotten to know them both better. Gary has been keeping us all updated these past few days on Pat's condition.

Pat wrote books about myeloma, blogged, sat on patient councils and never said no to talking to fellow patients. That's the thing about cancer that I never expected when I was diagnosed..the powerful and supportive myeloma community. Pat was my friend, role model, mentor, and sounding board. We talked about how we would want the end of lives to look like. Pat's goal has always been to enjoy his life in Florida, to spend time with his wonderful wife Pattie, to hang out with his dog Finnegan and to continue with his advocacy.

Pat puts on an annual beach party, gathering patients and caregivers for a weekend to both celebrate life and to get smarter about our disease. Pat preached that we need to be our own best advocate. I hope we can continue with Pat's Beach Party and use this year to celebrate his life. I'll be there.

I and so many others are absolutely heartbroken and lost.  I'm going to do my best to honor Pat with everything I do. Whatever your faith or belief, please let's all say a prayer, light a candle, or take a moment to think about Pat and Pattie. Sad day.


Sunday, February 7, 2016

Tom Shell's post in the Myeloma Beacon

The thing about myeloma is that at times it feels like a never ending journey. But that's a good thing. If the journey ended, that would mean we lost the fight. We strive for normalcy. But our new normal compared to our pre-diagnosis normal is very very different.  For instance, I have a normal week ahead of me. Work, meetings, gym, walk Gracie, hang out with Leslie, watch tv. Normal right.

But this week I also have chemo. And I'll have the dex roller coaster. Thursday I have a dermatologist appointment to look at some odd bumps under the skin behind my left knee. Thursday I also will bring a 24 hour urine container to work. It's time to collect. Friday I turn in the urine and give 5 tubes of blood. That's the new normal.

Tom Shell writes for the Myeloma Beacon, which by the way is a great source of information about myeloma and to read about other patient's and caregiver's experiences. Tom recently wrote about his journey in his post This Ride Never Ends.

Give it a read.

http://www.myelomabeacon.com/headline/2016/02/02/myeloma-in-paradise-this-ride-never-ends/comment-page-1/#comment-59744

Friday, February 5, 2016

Pat Killingsworth's Blog

I'm not sure folks read or follow Pat's blog, Living With Multiple Myeloma. He has also written books on the topic. Pat is positive, forward looking and very honest. His blog was the first I read after I was diagnosed and after I was over the initial period when I didn't want to read anything about myeloma. Over the years I've gotten to know Pat pretty well. He's a good friend and a great person. He's going through some challenges right now, but I'm confident that he's going to get through it. That's how Pat does it. He perseveres and will continue to be an advocate, mentor and teacher for all myeloma patients.

His blog provides a lot of useful information about myeloma. He also documents his personal journey. I strongly suggest you take a look at it.  http://multiplemyelomablog.com/

Wednesday, February 3, 2016

Breaking the Cancer Stereotype

This is a post from a young cancer survivor, Ali Powers. She wrote this for Stupid Cancer, an organization that provides support for young adult cancer patients.  But I think her words are worth taking a couple of minutes to read.


https://blog.stupidcancer.org/breaking-the-cancer-stereotype-cf0a8957aea8#.rpv4m8dl3


When I tell people I have cancer, I normally get something like ‘but you don’t look sick” or “you can’t have cancer, you still have all your hair.” I normally just dismiss their ignorance and say thank you, but what I really want to say is…

What do you mean I don’t ‘look’ sick? Can’t you tell my insides are sick not my outsides? You mean you can’t tell by looking at me that my colon is missing? Or that My lungs have tumors in them? You couldn’t just see that by looking at me? Would it be better if I faked a limb to fit your idea of being ‘sick’? Thank you, I try hard not to ‘look’ sick. Oh and not every cancer patient looses their hair, I have been working on growing my hair back for the past 2 years thank you for noticing.

I was at an event where hey had a comfy chair label “Reserved, this chair is for those with Chronic Medical needs.” I believe having cancer counts as a chronic medical need. There were two chairs across the isle from each other. A lady with a cane came and sat in one. But I didn’t sit there, I took the hard chair instead because people there didn’t know I was sick. I didn’t look sick and I know I would be judged if I sat there. But why is that? Is it because I don’t fit societies stereotype of someone with cancer? I am not super sickly skinny and bald, or I don’t walk around with an oxeygen tube hanging from my nose. I don’t look like I am going to die. I have been there at one point. I looked sick. I was super skinny, you could see all my bones, You could see the effects of the chemo on me. I was 5'9, bald, 100 pounds and a size 0. I have been there, but I have also been 5'9, 160 pounds and a size 13 (thank you cancer & steroids.) I have been that stereotypical cancer girl, but that was 2 years ago. I still have cancer, even though I don’t look like that “sick’ girl anymore.

So where does society get its view point of cancer patients? The media is a big one. With movies like The Fault in Our Stars, My Sister’s Keeper, Me Earl and The Dying Girl which all paint cancer patients as a sickly, frail, bald person. When Chasing Life came out the biggest complaint was she didn’t loose her hair or look ‘sick’ fast enough. It took her a good 10 episodes to go bald and look sick. But why is this idea forced upon us? Is it not believable that a person who functions fine out the outside, who looks fine, who functions like every other normal person could be dying of cancer? Is that too hard to comprehend?

Each cancer is different, and everyone reacts differently to the medications. I have friends who were on the same drugs as me and I lost a lot of weight while they gained a lot of weight. They are also breaking the stereotypes. My doctors told me with my chemo I should be able to keep my hair. Unfortunately, I lost it, but they said most people on that type of chemo keep their hair. Once again, breaking the cancer stereotypes. Some people have cancer that is just a lump or a bump they get it removed and they dont lose their hair or lose a third of their weight. They are also defying the cancer stereotypes. Everyone’s cancer is different and we dont fit into one mold.

Sometimes I wish I had a visible illness so I could avoid the judgemental stares, the mean comments and the stereotypical remarks, but not everyone as a visible illness. Just because I look fine on the outside have you check out my insides lately, the part you can’t see? I may look fine on the outside but my insides don’t match. Just because my illness isn’t visible doesn’t mean it’s not there.

Tuesday, February 2, 2016

57

57 since diagnosis.  5 years is just around the corner and then we're on double bonus time.







Monday, February 1, 2016

Cure Magazine to Honor Multiple Myeloma Heroes

CURE Media Group, publishers of CURE magazine, is honored to be hosting the Multiple Myeloma Heroes recognition event at this year's 20th annual International Congress on Hematologic Malignancies® in Miami, FL. At this event, CURE will honor individuals who champion those affected by multiple myeloma.

Multiple Myeloma (MM) is a cancer formed by malignant plasma cells. It is the second most common blood cancer affecting approximately 24,000 Americans each year. The five-year survival rate of people with multiple myeloma is 47%. However, many factors influence an individual's survival, such as age and overall health.

The MM Heroes recognition program is accepting nominations for individuals who have gone above and beyond on behalf of the multiple myeloma community through February 17, 2016. At the close of the contest, the winners and the individuals who nominated them will join CURE in Miami Beach, FL to be honored at the annual MM Heroes recognition event!
Nominate your Multiple Myeloma Hero today!

Help to promote awareness of MM by rewarding the voices and actions of those who have driven advancements and made a difference!


http://www.curetoday.com/events/MM