Tag: multiple myeloma

Analysis of the immune system of multiple myeloma patients achieving long-term disease control

The article is called “Analysis of the immune system of multiple myeloma patients achieving long-term disease control by multidimensional flow cytometry.” It makes me think they mean long-term disease control was achieved by flow cytometry. That would be pretty awesome. They really mean that the analysis was done using MFC.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3533663/

Highlights (determined by me)

Multiple myeloma remains largely incurable. However, a few patients experience more than 10 years of relapse-free survival and can be considered as operationally cured. Interestingly, long-term disease control in multiple myeloma is not restricted to patients with a complete response, since some patients revert to having a profile of monoclonal gammopathy of undetermined significance.

My comments: How can the monoclonal gammopathy be characterized as being of undetermined significance, when the pt has had MM? Obviously, there is a significance. I’m just picking. I know what they mean. It’s good to see that they’re asserting that complete response is not required. I have never had that. I think people put too much emphasis on it.

In summary, our results indicate that multiple myeloma patients with long-term disease control have a constellation of unique immune changes favoring both immune cytotoxicity and recovery of B-cell production and homing, suggesting improved immune surveillance.

My Comments: None, really. I just like the word constellation. :) Dr. Peterson used to use that word a lot.

Despite the fact that until recently MM was considered incurable, the introduction of high dose therapy/autologous stem cell transplantation and novel drugs has made it possible for a small fraction of patients to attain long-term (≥5 years) disease control even in the absence of a complete response, after reverting to having an MGUS-like profile. The underlying mechanisms leading to disease suppression in these patients are largely unknown, although immune surveillance has been hypothesized to play a critical role.

My Comments: This is me, in a nutshell. The small fraction.

Leg Rash? Bedbugs?

myeloma blog statsI don’t really blog much anymore, because I’m not being treated for my multiple myeloma these days.  It’s been pretty stable for nearly six years.  I try not to live in the myeloma world too much.  Actually, I don’t really even try.  It just works out that way.  When I first learned I had myeloma, back in 2003, it was all I could think about, from the time I woke up in the morning, until the time I went to sleep.  I’ve talked to a lot of people who experienced the same sort of involuntary obsessive thoughts about the disease.  It’s a strange feeling.  You know there’s something inside you that’s trying to kill you, and you can’t stop thinking about it.  The farther you get from your last treatment, the less you think about it.

Since I don’t do much blogging these days, I don’t pay attention to my stats, either.  This morning I decided I’d take a look.  What surprised me was the number of people who found my blog by searching for something with the word “rash” in it.    I had written a post in 2007 about what I think could have been an insect bite on my leg.  As you can see from the image on the right, “bed bugs rash” is now the number two search phrase that brings people to my blog.  Very interesting.

In the past, my blog was a big attraction for people searching about shingles.  I’ve had shingles at least three times, and blogged about it — with pictures.  I wasn’t shocked when I used to see that turn up in the analytics.  “Bed bugs rash,” however, is surprising!

Ferraro developed pneumonia

This is from the AP. Other reports mentioned only “complications,” which we now know to be pneumonia. It’s very common for myeloma patients to develop pneumonia.

Ferraro died at Massachusetts General Hospital, where she had gone Monday for a procedure to relieve back pain caused by a fracture. Such fractures are common in people with her type of blood cancer, multiple myeloma, because of the thinning of their bones, said Dr. Noopur Raje, the Mass General doctor who treated her.

Ferraro, however, developed pneumonia, which made it impossible to perform the procedure, and it soon became clear she didn’t have long to live, Raje said. Since she was too ill to return to New York, her family went to Boston.

Raje said it seemed Ferraro held out until her husband and three children arrived. They were all at her bedside when she passed, she said.

“Gerry actually waited for all of them to come, which I think was incredible,” said Raje, director of the meyloma program at the hospital’s cancer center. “They were all able to say their goodbyes to Mom.”

Test results and other stuff

I had blood drawn on 6/3, and got the results back today.

Test: Result (Normal Range)

IGG: 455 (600-1700)
IGM: 34 (35-290)
IGA: 466 (40-400)

This is from last time, so you can see there’s not much change!

IGG: 466 (600-1700)
IGM: 31 (35-290)
IGA: 408 (40-400)

I found a new web site that I’m still checking out.  It has details about lab tests and other info.
http://www.clinlabnavigator.com/

Anyway, the doc says I’m still smoldering!

I was at Five Points Pet Resort a couple of weeks ago, where this green-winged macaw engaged us.  He has a lot of personality!

StoryCorps/NPR Broadcast on Multiple Myeloma

From a reader:

I’m writing from StoryCorps, America’s largest nonprofit national
oral history project. Because our broadcast this morning on NPR talks
about the experience of a family affected by multiple myeloma, I
thought it might be worth sharing with your readers. Please have a
listen!
Sy Saliba talks to his daughter, Yvette, about her mother, Pat, who
passed away from multiple myeloma, a type of blood cancer, in 2005.
http://bit.ly/93jYOB

StoryCorps is an independent nonprofit project whose mission is to
honor and celebrate one another’s lives through listening. Since 2003,
tens of thousands of people from across the country have interviewed
family and friends through StoryCorps. Each conversation is recorded
on a free CD to take home and share and is also archived for
generations to come at the Library of Congress.

W5 investigates the high cost of Celgene’s Thalidomide

W5 investigates the high cost of Celgene's Thalidomide
http://watch.ctv.ca/news/w5/pills-patients–profits/#clip281624

Canada’s news program, W5 (which I assume is shorthand for who, what, when, where and why) , did a program called, “Pills Patients & Profits.”  You can see the entire segment on their web site.  Click on the link or image above to watch part 3, which focuses on the cost of thalidomide (Celgene’s Thalomid), which is an important treatment for multiple myeloma.

It’s very informative, so please do watch all four parts.

CancerCare Launches New Program to Help Multiple Myeloma Patients Cover Transportation Costs

A list member just told us about this. Thanks, Sandy!

CancerCare Launches New Program to Help Multiple Myeloma Patients Cover Transportation Costs

Help with myeloma treatment travel expenses‘Door to Door’ initiative offers individual grants to patients to help defray costs of transportation to and from medical care

NEW YORK, July 20 /PRNewswire/ — CancerCare announced today the launch of the “Door to Door” program for patients with multiple myeloma. CancerCare’s program will provide individual grants of up to $600 annually to multiple myeloma patients for covering transportation costs such as gasoline and taxi, bus or train fare to and from their medical care.

The program is funded in part by a generous grant from Millennium: The Takeda Oncology Company. CancerCare is a national non-profit organization based in New York City that provides free support services to people affected by cancer.

Multiple myeloma is a cancer of the bone marrow that is diagnosed in approximately 20,000 people annually in the U.S. Advances in the treatment of this cancer have dramatically increased patients’ life expectancy (an estimated 60,000 people in the U.S. are now living with multiple myeloma) and consequently lengthened the duration of treatment.

“Because of the nature of their therapies and the disease itself, many multiple myeloma patients may be required to visit their doctors several times a week over many months. Particularly for patients on a fixed income, these travel expenses add up and create a financial burden that may prevent them from keeping up with their health care,” noted Diane Blum, executive director of CancerCare. “The Door to Door program will provide much-needed relief to this patient population, and we are grateful for Millennium’s support.”

Founded in 1944, CancerCare has a long track record of providing financial assistance to people facing cancer; it is a cornerstone of its direct support services to help people cope with the emotional and practical issues of a cancer diagnosis. During fiscal year 2009, CancerCare provided over $4.2 million in grants to more than 24,000 people with cancer to cover treatment-related costs like transportation, child care and medications for side effects.

Last year CancerCare launched a separate foundation to help cancer patients cover the cost of their health insurance co-payments for certain types of treatments. To date, the CancerCare Co-Payment Assistance Foundation has assisted thousands of people undergoing cancer treatments with grants of up to $10,000.

To receive a Door to Door transportation grant, patients must meet certain eligibility criteria and complete an application form. The form can be viewed on the CancerCare website at www.cancercare.org.

For more information about the CancerCare Door to Door program, contact Jeanie M. Barnett, director of communications, at 212-712-6137; or email jbarnett@cancercare.org. For more information about multiple myeloma, see CancerCare’s free Connect booklet, Advances in the Treatment of Multiple Myeloma, available to order or download from the CancerCare
website.

About CancerCare

CancerCare is a national non-profit organization that provides free, professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved. CancerCare programs – including counseling, education, financial assistance and practical help – are led by professional oncology social workers and are completely free of charge. Founded in 1944, CancerCare now provides individual help to more than 100,000 people each year, and has more than
one million unique visitors annually to its websites. For more information, call 1-800-813-HOPE (4673) or visit www.cancercare.org.