Category: Myeloma

Myeloma

International Myeloma Foundation’s 3rd Annual Comedy Celebration for the Peter Boyle Memorial Fund

Beth 10 November, 200917 November, 2009 6

Ray Romano hosted the IMF’s third annual Comedy Celebration for the Peter Boyle Memorial Fund a few days ago. I’m so glad to see the IMF getting these big names to help raise money for research. Every life lost to myeloma is an important one, which is why these people are giving their time and lending their names to this cause. Read more at www.myeloma.org.

I really respect and admire the people at the IMF. I’ve been to three of the patient and family seminars and recommend them to anyone I meet who has myeloma or cares for someone with myeloma. I hope you’ll make a contribution so the IMF can find a cure and continue to educate patients and their families.

Categories Cancer, Myeloma, Research Tags International Myeloma Foundation, Peter Boyle, Ray Romano

Message from Pat & Pattie Killingsworth

Beth 3 September, 20093 September, 2009 0

Hi Beth-
I attended IMF conference in Twin Cities last weekend. Some interesting opinions and exciting news about maintenance therapy with or without a transplant. Go to www.multiplemyelomablog.com and follow my reports. How are you feeling? Hope all is well- Pat

Pat & Pattie Killingsworth
Pat@HelpWithCancer.Org
St Croix Falls, Wisconsin
Toll-Free 866-336-1696

Categories Cancer, Myeloma, Myeloma Treatment, Stem Cell Transplant Tags maintenance therapy

Myeloma treatment could be advanced by discovery

Beth 29 July, 200928 October, 2009 0

Have you seen this news? Could this lead to more effective myeloma treatment?

Multiple Myeloma Genome Unlocked
Discovery paves way for better therapies for some blood cancer patients, experts say
Posted July 29, 2009

WEDNESDAY, July 29 (HealthDay News) — The sequencing of the first three multiple myeloma whole genomes has been completed by U.S. scientists, who said this success will lead to a better understanding of this form of blood cancer and advance efforts to develop new therapies.

The analysis of DNA from more than 50 patient samples was conducted as part of the Multiple Myeloma Genomics Initiative. Overall, more than 250 patient samples have been collected and additional multiple myeloma genomes are being sequenced, according to a news release from The Broad Institute.

The first three complete genomes should be available online to researchers within the next several months, the news release stated.

The data from this research “will play an important role in developing better treatment options for individuals who derive little benefit from existing therapies and may ultimately help provide multiple myeloma patients with the most appropriate treatment for his or her disease. Furthermore, knowledge from this effort could also benefit patients with other types of cancer,” Louise Perkins, chief scientific officer of the Multiple Myeloma Research Foundation (MMRF) and the Multiple Myeloma Research Consortium (MMRC), said in a news release from the Broad Institute.

This research initiative “has created an unprecedented opportunity to examine an extraordinary breadth of genomic information to pinpoint the most important genes and cellular processes driving the disease,” added Jeffrey Trent, co-principal investigator on the Multiple Myeloma Genomics Initiative. “Such a remarkable dataset exists for very few other cancers; it will no doubt pave the way toward personalized medicine for multiple myeloma patients.”

Categories Myeloma, Myeloma Treatment Tags MMRC, Multiple Myeloma Genome, Myeloma Treatment

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

Beth 22 July, 200922 July, 2009 0

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

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

‘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.

Categories Myeloma, Myeloma Treatment Tags cancercare, multiple myeloma, Myeloma Treatment, transportation costs

Immunoglobulin Profile for June 1, 2009

Beth 10 June, 20096 January, 2016

GENLAB Immunology: Final 06/01/2009 15:03

IMMUNOGLOBULIN PROFILE
                                                             Reference
  IMMUNOGLOBULIN G                  *410         mg/dL       [588-1573]
          TEST REPEATED TO CONFIRM
            NOTE:  African-American reference ranges differ slightly from
                   those listed.  Please call the Immunology Lab at 684-6939
                   for race specific ranges.
  IMMUNOGLOBULIN A                  *432         mg/dL       [46-287]
          TEST REPEATED TO CONFIRM
  IMMUNOGLOBULIN M                  *26          mg/dL       [57-237]
  IMMUNOGLOBULIN E                   30          IU/mL       [4-269]

Categories Duke, Myeloma, Myeloma Treatment Tags IgA, immunoglobulins, multiple myeloma, Myeloma

Serum Protein Electrophoresis for June 1, 2009

Beth 10 June, 200910 June, 2009 2

Lab Report: Final 06/01/2009 14:36

SERUM PROTEIN ELECTROPHORESIS
                                                             Reference
  SPE INTERP
   COMPARED TO 2/10/09, NO SIGNIFICANT CHANGE IN PREVIOUSLY
  CHARACTERIZED (2) IGA-LAMBDA COMPONENTS FROM 0.21 TO 0.25 AND
  0.14 TO 0.19 G/DL.
  "I have personally performed the interpretation".  Dr. S. Pizzo, MD,PhD

  SPE TOTAL PROTEIN                  6.8         g/dL        [6.0-8.0]
  SPE ALBUMIN %                      65.6        %
  SPE ALBUMIN                        4.46        g/dL        [3.97-5.34]
  SPE ALPHA 1 %                      2.9         %
  SPE ALPHA 1                        0.20        g/dL        [0.11-0.32]
  SPE ALPHA 2 %                      10.5        %
  SPE ALPHA 2                        0.71        g/dL        [0.40-0.88]
  SPE BETA %                         11.3        %
  SPE BETA                           0.77        g/dL        [0.60-1.02]
  SPE GAMMA %                        9.7         %
  SPE GAMMA                          0.66        g/dL        [0.53-1.37]
  SPE M-SPIKE 1 %                    3.7         %
  SPE M-SPIKE 1                      0.25        g/dL
  SPE M-SPIKE 2 %                    2.8         %
  SPE M-SPIKE 2                      0.19        g/dL

Categories Duke, Myeloma, Myeloma Treatment Tags IgA, LAMBDA, multiple myeloma, SERUM PROTEIN ELECTROPHORESIS, SPEP

The eight lethal cancers

Beth 1 June, 20097 June, 2009 10

A blog reader sent this to me, and I wanted to pass it on.

Hi Beth,

I follow your blog and thought you might be interested to know about a new initiative launched by a coalition of patient advocacy organizations during the American Society of Clinical Oncology (ASCO). Led by the International Myeloma Foundation (IMF), MDS Foundation and the Tackle Myeloma Foundation (TMF), they unveiled a patient “Statement of Principles” to address the inequalities in reimbursement of cancer therapies.

Currently, Medicare and private insurance companies require higher deductibles and co-payments for oral drugs than for IV therapies and inpatient procedures. However, private insurance is regulated at the state level and Oregon, Indiana and Iowa have laws requiring equal coverage with similar legislation pending in several additional states and federal legislation introduced in Congress.

If you’re interested in learning more or signing the petition, you can check out the IMF or MDSF websites.

Best,
Allison

If you go to the IMF’s web site, you can read more about the Cancer Patient Statement of Principles. This was taken from their web site.

About the eight lethal cancers
Eight forms of cancer, of which multiple myeloma is one, are projected to cause 49% of the 562,340* cancer deaths projected in 2009. For each of these forms of cancer, at least half of the patients diagnosed will die from their cancer within five years. Those cancers are:

Type of cancer	Deaths projected in 2009	New diagnoses projected in 2009	5-year survival rate
Brain cancer	12,920	22,070	35%
Pancreatic cancer	35,240	42,470	5%
Esophageal cancer	14,350	16,470	16%
Liver cancer	18,160	22,620	10%
Lung cancer	159,390	219,440	15%
Multiple myeloma	10,580	20,580	34%
Ovarian cancer	14,600	21,550	45%
Stomach cancer	10,620	21,130	24%

*Source: Cancer Facts & Figures 2009, American Cancer Society, Atlanta. 2009

Click here to support the Cancer Patient Statement of Principles.

Categories ASCO, Myeloma, Myeloma Treatment Tags ASCO, Cancer Patient Statement of Principles, IMF, MDS, multiple myeloma, Myeloma, TMF

Duke Lemur Center / Bone Marrow Transplant Clinic today

Beth 1 June, 2009 5

Monica and I got to go to the Duke Lemur Center in Durham, NC today for business. It was great! I took some pictures through the fences with my iPhone camera, and this was the best of them. I’m afraid I can’t tell you what type of lemur this is, but I’ll find out.

Just before the meeting at the Lemur Center, I had a checkup at the Bone Marrow Transplant Clinic. I’ll have the results of my tests on Wednesday. It’s been almost two years since I had a skeletal survey, so I scheduled that for September. The skeletal survey is a series of xrays of the long bones, skull and ribs and spine. I asked about a recent report I read that suggests that PET scans should be used for monitoring myeloma. My doctor does those if there’s activity such as an increasing m-spike and nothing shows up on xrays. The PET can show plasmacytomas and other activity.

I’ve been told that standard radiographs aren’t much good at detecting bone damage until there’s been a significant amount of destruction, so it’s not a good early warning indicator. I’d like to have a PET scan just to see what’s lurking. I know they’re expensive. A few years ago I called around to get the costs at various places because I wanted one, but was told by my insurance company that they weren’t covered for myeloma. At the time, the cheapest PET scan I could find was about $3,000.

Did you know you can do that? If you’re not insured, or your coverage isn’t very good, call around to see who has the best deals on tests or procedures. The costs can vary quite significantly between institutions. Another money-saving tactic is to find out what’s covered under what setting. For example, my insurance has me pay 20% of services performed in hospitals. That’s why I have most of my chemo and all of my Zometa infused at a nearby doctor’s office. When I do that, it’s just a $30 copay. Investigate all of your options!

Categories Duke, Durham, Myeloma Tags Bone Marrow Transplant Clinic, chemo, Duke Lemur Center, Lemur, PET Scan, skeletal survey, zometa