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.

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tortoises for the “long haul”… lions for the “gusto”

Read a very interesting horoscope, not something I usually do. Prefer to “fly by the seat of my pants,” or the opposite extreme, be in total control. However I found “HOBOSCOPE”, authored by Mr. Mysterio in The Contributor highly entertaining, especially with what he had to say about Leo, my zodiac sign.

LEO

As many curious Leos already know, “senescence” is the word for biological aging. It’s a process that occurs in almost every living organism. As we age our cells don’t divide like they used to, DNA becomes harder to repair, and the kids’ music gets too loud. Tortoises, however, experience negligible senescence. Despite always looking like wrinkly bald men, tortoises age very, very slowly. Some have been known to live over 250 years. Some scientists believe that if we can master whatever causes tortoises to age so slowly, we could age more slowly ourselves. It’s worrisome to think about getting older, Leo, but I don’t think anti-aging turtle potions are the answer. Your journey through time has value every step of the way. However long it may last, make it count.

does this guy know me…or does this guy know me…hugmamma.  😉

As an added note (his words, not mine): Mr. Mysterio is not a licensed astrologer, a certified Lexus, or a notarized sample copy.

Want more pearls of puzzling pulchritude? Follow Mr. Mysterio on twitter at: www.twitter.com/mrmysterio …

…and tell him “hugmamma” sent you!  😉

the past, only a reference point

I don’t think it’s possible to escape one’s past. From what I’ve observed first-hand and with others, childhood experiences, good and bad, establish the paths our lives take. Where improvements are possible, we should make them for our own sake, and for the sake of our children. As parents we are empowered to discontinue the cycle of negativity.

Remembering back to when our daughter was to begin kindergarten, one specific memory stays with me. An evaluation was required to familiarize the staff with, among other things, her likes, her needs, her trepidations, as well as our own. On the appointed day, I met with the school psychologist. As I approached her I was nervous, as though I was the kindergartener. In reviewing the form with her, I lingered over a particular answer. The question had asked what qualities we would like in a teacher. It was amazing to think we had a choice. I replied that our daughter was with me most of the day and I was the disciplinarian. Therefore I would prefer that her teacher be more fun-loving like my husband, who enjoyed play time with our daughter. As I spoke, tears welled in my eyes and my voice choked. When I confessed to my guilt at not being more playful, the psychologist assured me that my husband and I were each performing very crucial tasks in our daughter’s upbringing. My equilibrium restored, I left feeling we were on the right path to being good parents.

As a child I wasn’t allowed to play until all my chores were done. Though not unique, it probably influenced the direction my life took. Because my mom was a single parent, working much of the time, it fell to us children to keep our home in order. Once a week I had to clean my room, dust, sweep and mop the living room, weed the small patch of garden at the front of our house, and help my siblings wash the car. Daily chores included setting the table for meals, as well as clearing it off afterwards, and watering the greenhouse plants. When I was older I also had to hand-wash clothes in the water-filled tub; hang them to dry on the clothesline; and hand starch and iron dressy-wear. Then there was homework to be done which, of course, took precedence over everything else. For a number of years, nap time was always part of the mix. So when I was allowed out to play, for I had to ask permission, I enjoyed every precious second, staying out until the sun set if possible. Summers spent with older sisters in Honolulu meant fun, fun, fun. Even though I still had chores to do, there were less of them, and no school meant no homework!

For the most part, doing chores before playing remains my life’s routine. Being 61 and married 40 years has given me license to cut myself some slack. So now I blog before I clean the bathroom. But keeping a clean and orderly home will never be wiped from my DNA, it is too deeply ingrained from a lifetime of repetition, beginning as a child. Just as allowing myself to “play” will never be without a sense of guilt for which I will always apologize, looking for a “pass” from my husband. Raised as 1 of 5 sons, with 7 sisters, he was not as burdened with chores as a youngster. So a clean house is not a must for him, but it is for me. The obsession can also extend to the orderly functioning of my mind as well. If my surroundings are in disarray, my brain seems overwhelmed by what it sees, becoming immobilized. That alone motivates me to straighten and vacuum. Since the presence of dust is only in the eye of the beholder, my mother-in-law living too far away to perform the “glove test,” dusting is one chore which is left for tomorrow, or the day after, or…

I did not insist that my daughter do a list of chores growing up. The cycle was broken with her. I enjoyed keeping house, having youthful energy on my side then. Being a mom was preferential to commuting into NYC to sit at a desk, watching the clock. But perhaps while I was doing what I knew best, keeping house, I allowed our child to have a different life. She was able to find her own passion, not one imposed by circumstances. I like to think that’s why she’s a career ballerina. And, she has proven to be a good housekeeper too. Having lived in an orderly home probably became part of her DNA. Fortunately she tends to play without first having to do all her chores. Thank God!

we are who we are, making the best of it…hugmamma.