living her best life #44: the facts…

Spoke with Pat while they waited for their flight home from Minnesota. In speaking with her, I got a lot of good information about what’s in store for her when she returns to the Mayo Clinic in a month or so. It prompted me to delve a little further into what had been a total mystery to me. I knew a little bit about multiple myeloma, but not all the scientific mumbo jumbo. I’m pretty sure I’m not alone in saying…I didn’t want to know everything. I was too afraid of what I might find out. Pat’s call gave me the shove I needed to go looking.

The website for The Multiple Myeloma Research Foundation was just what I was looking for to shed some light on Pat’s disease. Of all that I read, the following were of significance to me, as I’m sure it will be to the majority of my sister-in-law’s loved ones, near and far.

Multiple Myeloma is a Treatable Cancer

Multiple myeloma treatment options have increased significantly over the last 10 years. New multiple myeloma treatments have resulted in improved survival rates among myeloma patients. Even more encouraging, there are many promising new therapies under investigation now. We are not just accelerating the development of the next treatment, but by seeking to customize treatments based on our mapping of a patient’s genome, we are accelerating the development of the right treatment for each patient who urgently needs it.

The importance of genomics
One area researchers are working on is better understanding the biology of multiple myeloma. Through genomic studies (studies of the tumor cell DNA), we have learned that there are many DNA alterations in myeloma cells, and these frequently differ from patient to patient. The ultimate goal of genomic research is to develop personalized treatments based on the DNA in the myeloma cells of individual patients. These frequently differ from patient to patient. There is not one set of defining alterations.

Today, we know that certain DNA alterations indicate how aggressive the myeloma is and, in some cases, test results can help guide treatment decisions or determine eligibility for multiple myeloma clinical trials.

DNA alterations and treatment
For most DNA alterations, there are not enough data to guide treatment decisions. An exception is t(4;14). This is one of a type of chromosomal abnormalities called translocation in which a chromosome breaks and a portion of it reattaches to a different chromosome.

Studies have shown that patients with t(4;14) have better outcomes when treated with a proteasome inhibitor, such as Velcade.

Factors determining treatment
There is no one standard multiple myeloma treatment. A patient’s individual treatment plan is based on a number of things, including:

Age and general health
Results of laboratory and cytogenetic (genomic) tests
Symptoms and disease complications
Prior myeloma treatment
Patient’s lifestyle, goals, views on quality of life, and personal preferences

In addition, many cancer centers have developed their own guidelines for treating myeloma, and these may vary between centers.

Stem Cell Transplants

What are stem cell transplants?

A stem cell transplant, in combination with high dose chemotherapy, is a treatment that offers a chance for durable remission of multiple myeloma. High-dose chemotherapy, though effective in killing myeloma cells, also destroys normal blood-forming cells, called hematopoeitic stem cells, in the bone marrow. Stem cell transplantation replaces these important cells.

Hematopoeitic stem cells are normally found in the bone marrow and in the peripheral blood (blood found in the arteries or veins). Virtually all transplants in myeloma are now obtained from the blood and are referred to as peripheral blood stem cell (PBSC) transplants. Bone marrow transplants are no longer done in multiple myeloma. Stem cells are collected after approximately four cycles of initial (induction) myeloma therapy in order to reduce the amount of myeloma cells. Medications that stimulate the production of stem cells (called mobilizing) are often given to ensure collection of sufficient stem cells for several transplants.

All patients who are eligible for transplantation are encouraged to have stem cells obtained (also known as “harvested”) so that the cells are available if the patient chooses to undergo transplantation at some point during the course of their disease.Stem cell transplants are categorized by the source of stem cells: allogeneic stem cells or autologous stem cells.

Common side effects of high-dose chemotherapy and transplantation include nausea, vomiting, diarrhea, mucositis (inflammation of the lining of the mouth and digestive tract), and fatigue. In addition, because the high-dose chemotherapy attacks healthy, disease-fighting cells as well as cancerous cells, there is an increased risk of infection. Other possible, but infrequent side effects may include organ damage, particularly to the lungs, liver, and kidneys.

…okay then…so now i know.

………hugmamma.

wake up!…the clock’s ticking…

Diabetes Mellitus

Diabetes Mellitus (Photo credit: anaxolotl)

That’s the news I received from my family doctor. I’m pre-diabetic.

According to the news, I’ve something in common with millions of Americans. Small comfort since statistics don’t help in battling the disease. We’ve each got to help ourselves regain and maintain good health. It’s not impossible…just lots of hard work. And the older I get, I’ve less energy and will power for using more elbow grease. Especially when my elbow’s arthritic.

Learning that I’m pre-diabetic wasn’t a surprise. My mom had it, a brother has it, and I’m sure most of my other siblings do as well. It’s in our genes, but that doesn’t mean it’s a lost cause. We have a say in the path our health takes. And it always comes back to…exercise and diet.

Rather than assign me to some implausible regimen, my doctor agrees that my best resolve is to ramp up my exercise and stay clear of anything white…foods, that is. No white breads. No white rice.

I’ve done it before; I can do it again. The difference being…time’s running out on my ability to hit the reset button. Older age has a way of dealing with procrastination…it doesn’t. At a certain point the door closes on our options.

Only one option remains for me now…a lifestyle change with no going back. I’ve gotta do…what I’ve gotta do…

Ulcus bei Diabetes mellitus

Ulcus bei Diabetes mellitus (Photo credit: rosmary)

…the alternative…is not an option…

………hugmamma.     😦

would i want to know?…would you?

A question we ask ourselves, those of us with loved ones who have succumbed to Alzheimer’s.

I must admit to having pondered the possibility of being tested myself. Wouldn’t it be prudent to prepare myself, my family? Get my life in order; do what I need to do…before I can’t.

Wouldn’t I want to go out with one, big, last hurrah? Go out with a bang! Dare to live on the edge, knowing that now is “as good as it gets.”

Ronald Reagan

Ron Reagan chose not to know if he had the gene responsible for his dad’s demise. President Reagan suffered the debilitating effects of Alzheimer’s soon after he left office. The son’s decision was predicated upon the simple fact that as yet there is no cure. I was swayed, but not totally convinced myself. Until I read the following article in the  Wall Street Journal.

English: A healthy brain compared to a brain s...

English: A healthy brain compared to a brain suffering from Alzheimer’s Disease (Photo credit: Wikipedia)

The Curse of a Diagnosis
by Melinda Beck
     If you were in the early stages of Alzheimer’s disease, would you want to know?
     That question will haunt a growing number of people and their families as scientists devise more ways to diagnose the degenerative brain disease before it causes severe symptoms, but still can’t prevent or cure it.
     Linda Dangaard underwent a spinal-tap test last year confirming suspicions of early Alzheimer’s disease at age 56. Allowing his wife to be tested “was the biggest mistake of my life,” says Colin Dangaard, age 70. Even though she is still functional and vibrant and works in the family’s Malibu saddle-importing business, the diagnosis cost her her driver’s license, many of her friends and much of her self esteem, her husband says. “Her golden years were ripped out from under her by a diagnosis that I think is cruel, because there’s nothing anybody can do about it.”
     “It feels like a bomb has gone off in my life,” says Mrs. Dangaard, who concedes that she sometimes gets confused and repeats herself. “I also ask myself, ‘Why me?’ I eat right. I exercise. No one else in my family has this.”
     Traditionally, the only way to confirm Alzheimer’s was with an autopsy, when the disease’s characteristic plaques and tangles are found in a patient’s brain. Before that, doctors diagnose it on the basis of symptoms, once they rule out other explanations. But experts say the plaques and tangles start forming 10 to 20 years before symptoms appear.
     New tests are emerging that can detect those early brain changes, and more are on the horizon. Last month, the Food and Drug Administration approved a radioactive dye, Amyvid, that makes brain plaque visible on a PET scan. It is expected to be available this summer.
     The spinal tap test that Mrs. Dangaard had measures changes in the cerebrospinal fluid associated with brain plaques and tangles. It has been available for several years, but used mainly in research settings.
     Neither test is covered by insurance or Medicare, and neither is definitive alone. Negative findings reduce the likelihood that cognitive impairment is due to Alzheimer’s. But 20% to 30% of people over 65 have some plaques in the brain and many are cognitively normal. It is unclear if they will ever develop the disease.
     Genetic tests can identify gene variations that raise the risk of Alzheimer’s to varying degrees. One rare variation virtually guarantees that a carrier will develop Alzheimer’s at an early age; their offspring have a 50% chance of inheriting it. Researches are testing a drug that could potentially prevent Alzheimer’s in a large Colombian clan that carries the gene variation. As in many research trials, family members won’t be told who has it and who doesn’t, since the knowledge can be devastating without effective treatments.
     For patients already experiencing memory problems, the ethical issues are different, experts say. It pays to have a medical evaluation, since many treatable conditions can cause dementia-like symptoms. Once those are ruled out, neurologist John Ringman at the University of California, Los Angeles, says he typically asks patients with mild cognitive impairment if they want to know if it is likely to progress to Alzheimer’s–even though the knowledge won’t change their treatment. “Some people say, ‘Doc, I want to know everything.’ Other people say, ‘If it isn’t going to affect the treatment, I should just live my life.'”
     Mrs. Dangaard’s sister, Dawn Coffee, says it was Linda who first raised concerns about her tendency to repeat herself several years ago. Mrs. Coffee and their mother–all of whom work in the Dangaards’ business–were concerned as well, so they encouraged her to investigate.
     Her primary-care doctor found that she had a severe deficiency of vtamin B-12 which can mimic Alzheimer’s. B-12 injections helped a little, but when her symptoms persisted, they consulted a neurologist, Paul Dudley. He conducted more tests, including two MRIs, which were inconclusive, and suggested they seek a more definitive diagnosis at UCLA. Still, Dr. Dudley found enough evidence of dementia that he notified state health authorities, as required by California law, triggering a review of her driver’s license.
     At UCLA, Mrs. Dangaard fared poorly on tests of memory and word recognition. But her age and the insight she displayed weren’t typical of Alzheimer’s, so Dr. Ringman suggested the spinal tap. “I wanted to make sure I hadn’t missed anything,” such as an infection or inflammation in the spinal fluid, he says. (Drs. Ringman and Dudley both had the Dangaard’s permission to discuss her case.) The spinal tap found levels of beta amyloid protein and tau “consistent with Alzheimer’s disease,” he says. And given her scores on the cognitive tests, he adds, “it isn’t what I’d call the early stages–she has significant dementia.”
     Mr. Dangaard disputes that his wife is significantly impaired and says the diagnosis has done more damage than the disease. “Sure, she can’t do the complicated ordering that she used to do in our business, but there are lots of other things she does very well,” he says.
     Losing her driver’s license has been particularly hard. “It is like house arrest in California,” he says. Mrs. Dangaard attempted to win it back but failed the written test. Mr. Dangaard blames the stress of the situation and says she misses only one or two questions out of 220 when he quizzes her at home. “She can out-Sudoku me,” he says.
     Mrs. Dangaard jokes that while her short-term memory can be hazy, “I figure if I keep doing those tests over and over again, eventually they’ll be in my long-term memory and I won’t have a problem.” Asked if she thinks she has Alzheimer’s, Mrs. Dangaard says, “I guess my wiring is a little off. But knowing it is worse than having it.”
     Her husband says, “There’s no way this diagnosis benefits people who have it. It just crushes your spirit.”
     Her sister has a different view. “I love my sister dearly. We’ve been best friends all our lives. But she’s gotten worse and he’s in denial,” says Mrs. Coffee, who says that disagreements over Linda’s condition have caused a rift in the family.
     Experts in caring for Alzheimer’s patients say it is typical for family members to disagree in such cases. It is also typical for people with Alzheimer’s to remain highly functional in some areas of life and deteriorate in others. “Patients often work very hard to compensate for it, but there comes a point where they can’t hide it anymore,” says Lori Bliss, a care manager at Senior Concerns, a nonprofit organization that serves adults with special needs in nearby Thousand Oaks, Calif.
     As devastating as it is, an early diagnosis can give families time to plan and let patients participate in financial, legal and health-care arrangements. The course of the disease is often unpredictable. Some people work and remain independent for years after a diagnosis. “Families should let people with Alzheimer’s do as much as they can and be there as a safety net,” says Norma Featherston, a senior care consultant at the Alzheimer’s Association in Ventura County, Calif. Staying active and connected socially is vital to patients’ well-being, particularly in the early stages, she adds.
     That is one thing everyone agrees on in Linda Dangaard’s case: “I just want her to live every day and be as happy as she can be,” her husband says.

With ongoing research many diseases are being dealt with successfully. It’s not the case with Alzheimer’s. Longing to know if it’s in one’s genes is logical. But we are not devoid of emotions, and feelings. Most of us would be unable to fight the tidal wave of resignation. Sinking into depression would be the equivalent of standing in quicksand. The stress and worry of knowing one’s fate might even accelerate the progression of Alzheimer’s.

Wouldn’t it be bliss if we could rid ourselves of the weaknesses of the flesh, face the inevitable head on, and leave our material trappings behind … happily … peacefully? That would be my “happily-ever-after” wish. Unfortunately, life’s not a fairy tale…

The Reagan family in 1960, from left to right:...

The Reagan family in 1960, from left to right: Ronald Reagan, Ron Reagan, Nancy Reagan, and Patti Reagan (Photo credit: Wikipedia)

…so we do what we can…to make each moment…worth living… 

………hugmamma.