Category: Myeloma Treatment

Myeloma Treatment

Big Medical Bills

My nephew called last night to tell me that he’d had a trip to the ER Monday from work, by ambulance. He became really dizzy, and wasn’t even able to walk.  His manager called for an ambulance, and he was taken to the nearest hospital.  The ride made him feel even worse, causing nausea and vomiting.  After several hours at the hospital, he was told he had vertigo and was allowed to go home.  He saw a doctor the next day to make sure there wasn’t anything more he needed to do.

One of his concerns was the bill.  As someone who’s been paying medical bills on a continuous basis for over 6 years now, I offered some advice.  My advice to anyone who incurs hefty medical bills is to negotiate payments if you’re not able to pay the whole thing at once.  I’ve never been turned down by any hospital for a payment schedule, and they have never charged interest. Whatever you do, don’t put the charges on a credit card.

I do have pretty good insurance, but the annual out of pocket expense is up to $3500, depending on how much treatment I have, how many doctor appointments there are, what medications I’m on and if there were any hospital stays. In addition to the maximum out of pocket expense ($3500), there are drug and doctor copays.  There are also parking fees and driving expenses.  It can add up to a lot, believe me.  If I’ve made a trip to the Mayo Clinic or Dana-Farber or someplace, there are even more expenses.

I’m lucky that I have insurance that’ll cover the major stuff. Our plan has no lifetime maximum, and we have good prescription coverage. I don’t think anything I’ve ever done has been challenged by them.  I can see specialists when I want to, and only the really big stuff, like the stem cell transplant, has to be pre-approved.

There’s one problem with my insurance.  It’s tied to my job.  Should anything ever happen to cause me to lose my job, I’d be in big trouble.  I’m not old enough to be covered by Medicare and not poor enough to be covered by Medicaid.  I’m not elligible for disability, either. I’m an insured middle class person who, like most other working Americans, could easily become uninsured.  It’s a situation that can cause worry, because there’s nothing much I could do, except for exhaust my savings and sell my belongings to raise money for treatment if it was needed if, for any reason, I were to find myself uninsured.

I believe we do need to find a solution to address the need for affordale health care for all Americans.  I don’t think it’s something that we can keep putting off.  The way things are now, the very poor and the elderly get decent health care, and the middle class is left to fend for itself.  If employers provide group plans, that’s great, but there are a lot of people who have to pay for their own insurance or have none at all.  If you have insurance through your employer and lost your job, how long could you afford to pay the premiums?

I would ask that the people who think we should ignore the problem a while longer try to imagine yourselves jobless and without health care coverage. Then imagine that you have a chronic health condition or serious illness or injury. How will you manage to pay for your treatment or care?  What if you can’t even get insurance because of a pre-existing condition?

I usually don’t write about politics, but health care is a hot button issue here. I can’t imagine how any human being can want to deny another person the right to decent, affordable health care. Any of us could find ourselves in need one day.

Balloon Kyphoplasty for Spinal Compression Fracture

I got this alert last night, and it may apply to myeloma patients who have had spinal compression fractures.

Balloon Kyphoplasty for Spinal Compression Fracture

At 1 month, kyphoplasty patients had significantly greater improvements in global quality of life, back pain, and function than did controls.

In vertebroplasty and kyphoplasty, two minimally invasive procedures for spinal compression fractures, cement is injected into damaged vertebrae to prevent further compression and to alleviate pain. In kyphoplasty, a balloon is inflated within the vertebra to restore normal height and shape, and cement is injected into the resulting cavity. Although both procedures have been in use for longer than a decade, few data support long-term safety and efficacy of either one. With funding from a kyphoplasty instrument manufacturer, researchers randomized 300 patients with one to three acute vertebral compression fractures (average duration, 6 weeks) to receive supportive care alone or supportive care plus balloon-assisted kyphoplasty.

When the groups were compared after 1 month of follow-up, kyphoplasty patients had significantly greater improvements in global quality of life, back pain, and function and reported significantly fewer days of restricted activity. During the next year, these differences between groups narrowed, with some (but not all) losing statistical significance. Adverse events were similar in the two groups, apart from two reversible perioperative complications and a nonsignificant trend toward more new vertebral fractures in the kyphoplasty group.

Comment: This nonblinded study provides additional evidence that kyphoplasty improves symptoms and function more rapidly than supportive management. Although short-term pain relief and earlier resumption of normal activities are important outcomes, more data on the long-term efficacy and safety of the procedure are needed. The authors of the current trial will collect another year of follow-up data, and other groups are conducting randomized studies to compare vertebroplasty to kyphoplasty or to sham procedures.

— Bruce Soloway, MD

Published in Journal Watch General Medicine April 7, 2009

Citations:
Wardlaw D et al. Efficacy and safety of balloon kyphoplasty compared with non-surgical care for vertebral compression fracture (FREE): A randomised controlled trial. Lancet 2009 Mar 21; 373:1016. [Medline® Abstract]

Kallmes DF and Jarvik JG. Spinal augmentation research: FREE at last? Lancet 2009 Mar 21; 373:982. [Medline® Abstract]

Copyright © 2009. Massachusetts Medical Society. All rights reserved.

The above message comes from “Journal Watch”, who is solely responsible for its content.

Myeloma treatment could be advanced by discovery

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.”

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.

Immunoglobulin Profile for June 1, 2009

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]

Serum Protein Electrophoresis for June 1, 2009

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

The eight lethal cancers

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.

Oral mucositis caused by your myeloma treatment

I was told about about a research project that’s underway.  I have no affiliation with the group, so please do your due diligence.  If you participate, let us know how it went.

We are currently looking for people that have suffered “oral mucositis” (mouth inflammation or sores) as a result of cancer treatment to participate in 45 min telephone interviews.

The purpose of this research is to understand what does or does not work as treatment for this condition.

The interviews can be scheduled this week and next and participants receive $100.

Please respond with interest to contacts below. If this is not you, please refer or post for others that may have interest.

Kind Regards

Jan Mallery-Groom RN
Clinical Project Manager
+510-922-9710
recruitingresourcesllc.com