Beth Morgan Multiple Myeloma Treatment Blog
My life as a myeloma patient for almost two decades
I was diagnosed with MM in January of 2003. I underwent various treatments, including thalidomide/dex, revlimid/dex, dex alone, a clinical trial of CNTO 328, and Velcade, Doxil and dex until late August, 2007, when I had an autologous stem cell transplant after high dose melphalan. I experienced what's known as a very good partial response (VGPR). Since then, my myeloma has been stable.
This is a Red Velvet Ant (Dasymutilla magnifica) that was wandering around in the yard. They’re actually not ants though. They’re wasps! When I got back in the house, I googled “read and black wingless ant” to find out what she was. What I found out is that they have a painful sting and are pretty tough creatures. They’re also known as “Cow Killers.” They’re not actually capable of killing cows though, so no need for dairy farmers to be hyper-vigilant.
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.
This has been a busy week. On Thursday, I took a friend to UNC in Chapel Hill for surgery and spent most of the day there. UNC is an impressive facility. I used to spend a lot of time at UNC when that was my home base for treatment. It’s not a terrible place to have to spend several hours. On Friday, I was able to go back to pick her up to take her home.
This week I’ve been feeding some feral cats for someone who’s on vacation. There are three small colonies in Southern Pines that rely on this person for daily food and water. Some have been trapped, spayed or neutered and released. Tomorrow is my last day for doing that, I think.
I have a friend’s yard to mow this weekend. I should be doing it now, before it gets too hot. I have to do my own, too!
On top of that, I’m watching someone’s dog while their family takes a short trip before school starts. He’s an old timer, so he’s no extra bother. He gets along well with my dog and the cats. He’s jumped into the pool before, so he does have to be supervised when he’s out in the yard.
On Tuesday, we went to the National Night Out Against Crime event at Memorial Park in Southern Pines. Jacob had a lot of fun watching the canine unit demonstration. I have some pictures of that I can post later.
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.
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.”
On Saturday, August 22nd , beginning at 2pm, at the Owens Auditorium at the Sandhills Community College, the County Animal Response Team (CART) will be hosting an invaluable event for those owning or caring for pets and/or domesticated animals in Moore County. A free showing of the award-winning documentary, “Katrina Tails,” will be followed by a presentation and discussion about Moore County’s newly-revised Animal Response Plan to be executed during disasters. Call 910-947-2858 for more details.
More information:
GROUNDBREAKING DISASTER PLAN FOR MOORE COUNTY’S ANIMALS
On August 22nd, the County Animal Response Team (CART) will be hosting an invaluable event for those owning or caring for pets and domesticated animals in Moore County. A free showing of the 2008 Accolade Award-winning documentary, “Katrina Tails,” will be followed by a presentation and discussion about Moore County’s newly-revised Animal Response Plan. The event will take place at the Owens Auditorium at Sandhills Community College beginning at 2pm.
Doug Harris, a Katrina victim, remembers being asked to leave his pets behind: “We were informed that buses would be taking everyone to higher ground and we would not be able to take our pets with us,” he said. “The worst was being forced to walk away from my beloved dogs who loved and protected us for years and would never have done that to us for any reason.”
We are all haunted by the TV footage and photos of scared and hungry animals left behind in the wake of Hurricane Katrina. Long after the flood receded, the heartbreak continued as people searched for their lost pets.
Back in 2006, President George W. Bush signed the Pets Evacuation and Transportation Standards (PETS) Act into law.
This landmark legislation requires local and state disaster plans to include provisions for household pets and service animals in the event of a major disaster or emergency.
With more than 358 million pets in the country residing in 63 percent of American households, the PETS Act helps ensure that Americans never again are faced with the choice of abandoning their pet and finding their way to safety or staying with their pet and remaining in a hazardous and potentially life-threatening situation.
Moore County’s Animal Response Team is chaired by Scot Brooks, the County Emergency Manager and Deputy Director of Public Safety. It brings together representatives from the NC Department of Agriculture, the County Department of Animal Operations, the Fire Department, the NC Cooperative Extension Service, the NC Wildlife Resources Commission, the NC Veterinary Alliance, the American Red Cross, the Veterinary Medical Assistance Team, and Moore County’s Pet Responsibility Committee.
Over the past two years, the Team has met and worked on an Animal Response Plan which considers not only pets and service animals, but all domesticated animals in Moore County. It has also included provisions for wildlife.
Plans have been made with Southern Middle School in Aberdeen designating it as a “Co-Located Shelter,” that is, a shelter that accepts both people and their pets.
Meetings have been held with a group of local veterinarians and decisions are being finalized regarding locations for the care and treatment of sick and injured animals in a disaster or emergency.
Contact information for local, State and National animal rescue resources has been compiled for quick access. A plan for a database of local volunteers to help with the animals in an emergency is underway.
The event at the end of August is designed to help residents prepare, plan and stay informed regarding the safety of their pets and animals in a disaster.
Members of the CART will be on hand at the event to answer questions and a number of booths will distribute related information. The Moore County CAMET (Companion Animal Mobile Equipment Trailer), a vehicle designed to quickly enable the setup of an emergency pet shelter will also be on display for the public to see, as will an equine ambulance designed to transport injured horses. Residents may also talk to a CART representative about signing up to be a member of the disaster volunteer pool.
In these uncertain times, there is one thing we can unfortunately be sure of: there will be emergencies and disasters. Animals and humans are profoundly impacted by these unexpected and many times unpredictable events. However, with advance preparation by individuals and government agencies working together within a community, the better everyone is able to effectively respond to the crisis.
For more information regarding the event, please call Animal Services at 910-947-2858.
A list member just told us about this. Thanks, Sandy!
‘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.
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.
I was talking to James about a saddle he was working on. I asked him what it was called, and the name struck me as being kind of funny, so I couldn’t help but laugh! What do you think?
This is a butet jumping saddle
For saddle repair, visit http://cabinbranch.com/ in Southern Pines. To get a WordPress blog like this one, call ConnectNC.