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A Patient Reports on Her Experience Serving on the IRB Board

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"Sitting at the table I felt prepared. I knew the language they were speaking thanks to all the education the IMF has given me....The two hours flew by."

As I drove down the crowded highway on a rainy Thursday morning, I asked myself, "What did you get yourself into this time?"

I was headed for my first institutional review board (IRB) meeting as a board member. The traffic was horrendous and I felt overwhelmed. I thought about turning the car around and driving home.

But I had an important job to do. The primary responsibility of an IRB is to protect the rights and welfare of people participating in clinical research and to function as a kind of ethics committee focusing on what is right or wrong and what is desirable or undesirable.

To prepare for the meeting, I had reviewed 13 clinical protocols, informed consent forms (IFC), and other important documentation related to each proposed clinical research trial/study. My head was spinning. Would I be able to contribute significantly to the discussions about this important process?

Why Are IRBs Necessary?

Federal regulations require all proposals for research involving human subjects that receive support, directly or indirectly, from the federal government to be submitted for prior review to an IRB. Prior to the 20th century, research ethics were primarily governed by individual consciences and professional codes of conduct. But early in the 20th century it became evident that many research subjects were being abused and left uninformed. The Tuskegee syphilis study, the experimentation done by Nazi physicians during World War II in concentration camps, and the Milgram obedience experiment are some of the most notorious of these abuses. They resulted in the National Research Act of 1974 and the establishment of the ethical principles of the Belmont Report, which guide the actions of IRBs.

As I approached the parking garage on that dismal Thursday morning I gave myself a much-needed pep talk. I know it is always important to hear the patient's voice, but I was questioning myself. Will I be able to provide the patient's perspective? Will I speak up or be intimidated by the doctors and other scientific board members? Will the questions I ask and the concerns I pose be taken seriously? I was the "unaffiliated, unscientific" member of the board.  And none of the protocols I reviewed had anything to do with myeloma--a subject I felt comfortable discussing.

Taking a Seat at the Table

I was greeted warmly as I entered the meeting room, and invited to take a seat at the table. When I had previously visited to observe the IRB, I sat in the back of the room. As soon as a quorum was present, we began our discussions.

Sitting at the table I felt prepared. I knew the language they were speaking thanks to all the education the IMF has given me. I just didn't know the specific drugs that were being researched. I felt comfortable participating in the meeting. The two hours flew by.

As I entered the elevator to return to my car, the hematologist/oncologist who chaired the IRB pulled me aside and thanked me. It is very important to the IRB process, he said, to see things through the eyes of a patient, and he added that the other "affiliated, scientific" members really appreciated my participation. I guess they did take me seriously. I didn't even notice the traffic driving home.

I will have a larger role as a secondary reviewer (reviewing an informed consent form and presenting recommendations to the entire board) for one of the protocols that will be on October's agenda. Once again I know I will be nervous, but I am up to the challenge. I encourage anyone who has an interest in the research process to contact your local IRB office and get involved. You will be truly appreciated.

Cynthia Chmielewski

A Whole New World: Becoming a Patient Advocate

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What does it mean to be a patient advocate? If you asked me that six years ago I would have no idea how to answer that question. Six years ago I was newly diagnosed with myeloma and struggling to learn about this heterogeneous disease and all the treatment options that would be available to me. Six years ago I was quite a different person. Six years ago I didn't have discussions with my healthcare team or ask them questions when things didn't seem right. Six years ago I thought I would offend my doctor if I sought a second opinion. Six years ago I was an uneducated, uninvolved patient who blindly followed doctor's orders. BUT six years ago I had the good fortune to attend my first IMF Patient & Family Seminar in Short Hills, New Jersey and things began to change.

The IMF quickly taught me that "Knowledge is Power." Being a teacher I liked acquiring knowledge so I began educating myself about myeloma. I attended IMF Patient & Family Seminars, listened to webcasts and Living Well with Myeloma teleconferences, participated in online communities like ACOR.org, which is now smartpatients.com and read countless publications. Gradually I became a more active participant in my healthcare. I was asking questions, engaging in discussions, requesting tests and seeking second opinions. I was becoming my own advocate and an "e-patient."  I shared what I learned about the importance of being an educated, empowered and engaged patient with members of my support group, the newly diagnosed myeloma patients I mentored, family and friends. 

I thought I was a "patient advocate;" boy did I have a lot to learn! In 2011 I was to asked to represent the Philadelphia Multiple Myeloma Networking Group at the IMF's annual Support Group Leaders Summit. While registering at the summit, two young ladies from the IMF Advocacy team approached me about participating in an upcoming advocacy training webinar. They were so nice and passionate about what they were doing, I couldn't say no.

I was trained by the IMF on how to become a political advocate. The IMF Advocacy team helps guide individuals to advocate for critical health issues that affect the myeloma community. I learned how to arrange a meeting with my representatives to Congress, how to conduct an in-district meeting and what the appropriate follow-up should be after a meeting. I was also educated on the current critical issues facing myeloma patients. Soon I found myself sitting at an in-district meeting with the legislative health aide from my district in New Jersey, asking for support for the oral chemo parity bill, the Cancer Drug Coverage Parity Act. I'm happy to say days after that meeting, Rep. Rush Holt, my representative to Congress, signed on as a co-sponsor of this bill. I would like to think it had something to do with my meeting and how well the IMF Advocacy team prepared me for it.

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This year I attended the American Association for Cancer Research's (AACR) Annual Meeting. I was selected to be part of the AACR's Scientist-Survivor program. This is a very competitive program, but thanks to the training and opportunities the IMF has afforded me I received one of AACR's coveted scholarships. While at the meeting I discovered an entire new area of advocacy- research advocacy. Research advocates provide the unique patient perspective in the research process, working with investigators, companies and government agencies to accelerate progress against cancer. As part of the AACR's Scientist-Survivor Program I learned that the National Cancer Institute (NCI) and the Department of Defense (DOD) use research advocates. I also learned that research advocates must demonstrate an understanding of cancer and the research process, have a familiarity with how the scientific community works and be able to work as a member of a scientific team.

Many of the other participants in the Scientist-Survivor Program were already research advocates serving on IRBs (Institutional Review Boards), participating in advisory boards, speaking on panel discussions at scientific meetings and refining cancer research education materials. They were very willing to guide me on how to become involved in this new avenue of advocacy. Once again I felt prepared to undertake this new endeavor because of the IMF. I learned a lot about clinical trials and research by attending the American Society of Hematology's Annual Meeting as a patient advocate representing the IMF.

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Upon my return from the AACR's Annual Meeting I created a research advocate profile on the NCI's newly designed Office of Advocacy Relations (OAR) website. But I felt I was at a stand-still. I was in the NCI system, but I only would be contacted if they needed a research advocate that matched my profile.

Once again I was asked to represent my support group this year at the IMF Support Group Leaders Summit. Part of this year's training was a session on.... you guessed it- research advocacy. Research advocates Jack, Jim and Mike presented to the group and encouraged us to get involved. They suggested we start our advocacy efforts at the local level at our own cancer center. I took their advice and contacted my local cancer center and asked if I could observe one of their Institutional Review Board (IRB) meetings. IRBs are groups of experts who review plans for clinical trials before they begin, seeking to protect the safety and rights of people who will participate in the research. My local cancer center was very accommodating and invited me to sit in on an IRB meeting a few weeks ago. After the meeting I wrote a thank you note and asked how I could become involved as a patient advocate on an IRB. In response to my question they invited me to observe another IRB meeting and then start the training process to join an IRB! I am now on my way to becoming a research advocate.

Why am I sharing this? Because anyone can become an advocate! You can be a support advocate, a political advocate, a research advocate or a fundraising advocate. The IMF is there to support you and provide you with the tools to be successful. Join the IMF ACTION team, start/participate in an IMF support group, work with Suzanne Battaglia to organize a fundraiser or try your hand at research advocacy. I have evolved as a patient and an advocate over the last six years and I have to credit the IMF with being instrumental in my metamorphosis.

Cynthia Chmielewski
@MyelomaTeacher on Twitter 

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My life was deeply touched this fall by three special, hardworking couples: Karl and Lorraine Vollstedt, Howard and Teresa Martinson, and Harold and Sue VanDuyn. Each went out of their way to welcome me into their local myeloma support group community.

With the help of myeloma survivor Barb Davis, Karl and Lorraine are co-leaders of the Stillwater, Minnesota Multiple Myeloma Support Group. I met them when I attended my first ever support group meeting five years ago.

I am fond of telling anyone who will listen that the education I received—and the friendships I made there—helped save my life.

After a number of years, Karl is still alive and kicking. Myeloma and advancing years have taken their toll on Karl. And Lorraine recently had both knees replaced, along with a painful foot surgery. But you wouldn't know it by talking with them—two of the most positive, upbeat people I have ever met

Lorraine was kind enough to invite me to stay with them during my recent visit north. I was scheduled to speak to a myeloma support group in Minneapolis, but I set up my schedule to allow me to spend a couple extra days with Karl.

We drove into the city for a tour of Target Field, the new Minnesota Twins' ballpark. We visited a homeless center there, too; Karl is a member of their board of directors.

And speaking of homeless shelters, my new friends and support group leaders, Howard and Teresa, in Spokane, Washington, also help to run a shelter in nearby Coeur d'Alene, Idaho.

What?  Like dealing with their own cancer and helping other patients and caregivers—doesn't keep them busy enough? Amazing!

I met Howard and Teresa—and our third couple, Harold and Sue—in Dallas at the IMF's Support Group Summit. Harold had just introduced himself when he started bragging-up their hometown of Grand Rapids, Michigan. They invited me up to speak to their group and I eagerly accepted.  Even thought Grand Rapids is the state's second largest city, there wasn't a support group for myeloma patients anywhere to be found nearby. So of course, this energetic couple started one ten months ago.

With the help of the IMF, the new, fledgling group is already amazingly successful.  Over 40 patients, caregivers and family members somehow squeezed into a room in the world famous Gilda's Club to hear my story on Monday. And Harold was right! Grand Rapids was a very impressive city, with new medical and research buildings rising everywhere.

But it's the people that make Stillwater, Spokane and Grand Rapids so special. Everyone I met was warm and helpful.

Harold only recently recovered from a stem cell transplant, and some of his counts haven't recovered.  But like Karl and Lorraine, you wouldn't know it!  Harold may be the patient face of the new group, but Sue pulls everything together.  She's the organizer.

Isn't that always the case?  Behind most every helpful myeloma survivor, there is a dutiful caregiver that helps monitor their medications, gets them to appointments on time and helps emotionally hold things together.

At breakfast Tuesday, Harold started rattling-off examples of all the new myeloma friends the couple had made since starting their group.  Right back at you, Harold!  I hope I make the list.  I can't imagine having better friends than Karl, Lorraine, Howard, Teresa, Harold and Sue!

Three exceptional patient/caregiver teams and support group leaders.  Six exceptional friends.

Funny how a cancer like multiple myeloma can bring out the best in people, isn't it?

Feel good and keep smiling!

Pat

Can We Trust Our Doctors Too Much?

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I met a wonderful woman recently at a support group meeting. Before and after I spoke to the group, she shared her experience with me, gushing several times that her new medical oncologist made her feel special.

He doesn't enter the room keeping one hand on the door while he pretends to listen to me," she said.

Apparently she had recently relocated from a larger metropolitan area to a much smaller, friendlier town in the Pacific Northwest. But the woman suffered from significant bone damage caused by her multiple myeloma. And she also mentioned several serious co-morbidities that would have me packing my bags and heading to see a big city specialist!

Considering that a number of other support group members had expressed disappointment with their local oncologists, I'm pleased for her. Crafting a good relationship based on trust of one's doctor can be a special thing.

But it can have a dark side. Blind trust in the guidance of any physician can become problematic for a multiple myeloma patient, especially if the physician isn't a specialist. And even then, a second opinion is almost always a good idea whenever we find ourselves facing an important therapy crossroad.

Bedside manner is important. But I will take a curt, hurried or difficult-to-understand specialist who will work with me to craft a new therapy course of action over a friendly, less well-informed doctor who tends to make decisions for me any day!

Several of my uncles were physicians. One of them was the chief of staff at a large western hospital. When my wife, Pattie, was first diagnosed with cancer 16 years ago, he advised me to "Find the most knowledgeable specialist you can for her, then do whatever it takes to get an appointment." He made no mention of how that physician and my wife might or might not get along. It was all about the insight and expertise her new specialist brought to the table.

Finding a medical oncologist that is ready and willing to help you coordinate your therapy is the cornerstone of building a solid healthcare team. My advice? Shop around until you find a medical oncologist that gets you. But make sure that he or she is willing to work closely with--and ultimately follow the recommendation of--one or more myeloma specialists.

Feel good and keep smiling!

Pat

Think Like a CEO to Build a Winning Health Care Team

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You have been diagnosed with multiple myeloma.  You and your family are shocked, scared and shaken. The initial reaction--by you and your doctor--is to start treatment immediately. 

STOP! Time is rarely of the essence following a multiple myeloma diagnosis. Multiple myeloma tends to be a slow moving, plodding yet unstoppable disease. A few hours, days or even weeks are unlikely to affect your overall prognosis.

Even if you have already started treatment, it is never too late to re-evaluate your treatment plan. Have you considered a second opinion? Why are you and your doctor doing what you are doing?  What are your expectations and goals? When is it time to change course, continue with your current treatment regimen or watch, wait and do nothing at all?

These are big decisions--and very difficult to make on your own, even with the help of a caregiver.Unlike some other cancers, myeloma patients often face overwhelming treatment options. Most work at first.  But what then?  Do you undergo an autologous stem cell transplant now, or wait?  If you do decide to transplant, do you start maintenance therapy soon afterwards or wait?  When do you resume treatment if and when your numbers start to rise again?  And which drugs should be used to best slow your relapse? 

By assembling a comprehensive health care team, you can surround yourself with experienced, qualified health care professionals to help you make the treatment choices which are best for you. 

Think of yourself as the CEO of a major company. Or a general contractor of a building project. Are you into sports? How about acting like you are the owner of a professional sports team? Or the president of the PTA?

Regardless of which leadership style you emulate, remember that powerful leaders in important positions surround themselves with experienced support staff. You should do the same. Here are the positions you need to fill as you create your winning support team:

�      Primary Caregiver.  This may be the most important position.  It can be a spouse, family member or friend.  While it is best to if one person fills this role, it can be done by a combination of people.  Your primary caregiver is responsible for reminding you to take your meds and help you get to and from medical appointments--and to take careful notes and help you ask questions at those appointments.  They are also there to provide emotional support and help you coordinate your health care team.

�      Multiple Myeloma Specialist.  This can be an oncologist or hematologist, preferably from a regional or nationally known cancer center.  Once you decide which treatment course to follow, this specialist becomes a consultant, keeping your team on course, or helping you make course corrections as necessarily.

�      Medical Oncologist.  This is the doc you see regularly.  He or she consults with your specialist of choice, working together to make your day-to-day treatment decisions. 

�       Oncology Nurse(s).  Let's face it;  oncology nurses run the show!  They keep track of prescriptions and remind the doctor about day-to-day details.  They are the ones who administer your IV and help minimize treatment side-effects.  Oncology nurses coordinate your labs and make sure you are doing OK.  In my next life, I am going to be an oncology nurse!  These brave, skilled women (and men!) have the difficult task of working directly with the patient day to day. They rock!

�      Internist or Family Doctor.  Don't let cancer dominate your entire health care world. You still need a regular doc to handle non-cancer -related issues.

�      Support Group.  Multiple myeloma support groups share all kind of details and data. Learn how other patients cope with side effects.  Learn what other patients are using and why.  Your support group members will become like family.  They understand what you are going through. 

�      Family and Friends.  Your friends and family want to help--they just don't know how--and you can't expect them to read your mind.  When they offer to help, try and assign them small, simple and achievable tasks.  They will feel good about themselves--and you will feel better knowing you have people surrounding you who love and care for you.

You don't have to stop there!  Add a nutritionist and/or naturopathic MD. How about a massage therapist or acupuncturist?  Try a physical trainer or therapist. You can make your medical team as large or small as you like. Keep it simple or expand it as you go--it's up to you--you are your own team's leader!

Of course, you won't be able to build a winning medical team overnight. It may take months or years to develop. And, like a good team owner or coach, you may decide to make changes as time goes on. Remember, winning owners change coaches and team personnel as needed. Team chemistry is important. If someone isn't contributing, or can't get along with other team members, find someone who can!

Good luck building your winning health care team!  Come on--I know you can do it--your life may depend on it. 

Feel good and keep smiling!

Pat

Ride Your Therapy Horse Until It Drops!

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Late last year I met a 19-year multiple myeloma survivor at the American Society of Hematology (ASH) meetings in San Diego.

She was an elderly African-American woman who seemed to be in surprisingly good health.

As I often do when I meet any long-time survivor, I asked her what her secret was for living so long. She thought a moment and said, "Therapy is like riding a horse."

"A horse?" I asked. 

"Like riding a horse," she repeated a bit mysteriously. "You should ride that horse until it drops--then wait for it to get up, and ride it again!"

As we talked some more, I began to understand her point. Patients should use a therapy for as long as they can, then go back to it and try it again and again until their doctor is sure that they have gotten every possible day--or mile--out of the drug or drugs that they've been using.

She explained that there are only so many myeloma drugs available to use at any one time. She felt that getting the most out of each of them had added years to her life. "And I've been lucky!" she said. "Just when I thought that I was running out of time, another drug came along to help me live a while longer."

My conversation with this wise and elegant survivor changed the way I think about myeloma therapy.

So many of us can be in a hurry to change horses midstream, abandoning a therapy that might not be working as well now as it did before. But that can be a mistake.

Even if your numbers aren't going down anymore--maybe they're stable, or even rising slowly--squeezing every precious day out of your therapy can add up to a lot of extra living in the end.

Who knows? A few extra months here and there might make the difference between becoming a statistic or living to fight another day! Wise advice, indeed!

Feel good and keep smiling! 

Pat


The Faded Bracelet

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jimomel_app.jpgThis is a story sprinkled with equal parts of sadness, admiration, and inspiration about a rugged Nebraska farmer and his courageous approach to myeloma. Glen Potter was no stranger to myeloma when he was diagnosed in 1999.  His father had died with it. His response to the shocking diagnosis was, "Well, how do we fight it. What do we do first?"  He had an auto transplant in 2000 and was more or less on continuous treatment for the rest of his life, rarely mentioning his painful Thalidomide neuropathy, chronic fatigue, or innumerable long trips to Arkansas.

Glen was a member of my Central NE Myeloma Support Group for 10 years and rarely missed a monthly meeting. He wore his burgundy IMF bracelet continuously and was a constant spokesman for more myeloma research and better public understanding of this horrible cancer.  No one will ever know how many countless conversations were started by that burgundy bracelet.  As he cared for his cattle and grew his crops the sun eventually faded the constant companion on his wrist from burgundy to pink to tan to off-white. It was as much a part of him as his white Stetson hat. It is impossible to tell you what a truly nice man he was...unbelievably optimistic, supportive, and a friend to everyone he ever met.

Our group was planning our annual summer evening picnic and it was to be on Glen's 65th birthday.  I planned to have a special cake from a local grocery and nearly 40 voices would sing "Happy Birthday" that night. Food plans were made, tables and chairs secured, and our speaker from Omaha was anxious to attend.  A few days before the party Glen was playing with his grandchildren.  His family reports that he felt well, but in an amazingly short time he began to feel sick. High fever  forced him to the ER where he was admitted.  Despite IV fluids and supportive care he rapidly deteriorated and within hours was put on life support technology. Cardiac irregularities and renal failure quickly followed, most likely all caused by overwhelming sepsis.   Despite the best of care, Glen died.

Our group was devastated. Glen's funeral was scheduled for Saturday, the day of his 65th birthday and the day of our summer evening party which we obviously cancelled. The day before his funeral his daughter Shelly called to ask me if I had any more of the burgundy IMF bracelets which I had given to her father, the one faded nearly white with age and exposure. She explained that Glen would be buried with that faded bracelet still on his wrist, and she wanted to hand out new burgundy bracelets to all the close family members. The Potter family hates myeloma as much as anyone possibly could, and they plan to continue spreading the word about multiple myeloma. Their new burgundy bracelets will start many conversations. Glen's commitment to fight this disease and find a cure will continue long after his death. At his funeral the church was full and overflowing with people.  In several eulogies myeloma and Glen's battle with it were mentioned. Myeloma. Not cancer.....myeloma! Too often when people with our disease die, cancer is listed as the cause when it is "myeloma" which needs to be emphasized for better public awareness.

Glen Potter lived and died with myeloma for 13 years, but he never gave it a chance to rule his life. By his IMF bracelet, and the bracelets his family will still wear, he will continue to silently advocate against our awful disease.


patkillingsworth_app.jpgEnergizing. Life changing. Hopeful. All adjectives that can be used to describe my experience at this week's IMF Support Group Leader Summit in Dallas, Texas.

I must admit that I was reluctant to attend this year's meeting. I had lots of excuses. I had just returned from speaking to a pair of support groups in L.A, and I knew I was returning to California again this Thursday to speak to a group in Orange County, so I'm way too busy. I'm only one of three co-founders of our Nature Coast (Florida) Multiple Myeloma Support Group - and probably the least active at that. Or how about his one: my platelet and white blood counts were very low and I wasn't feeling well. Pick an excuse, any excuse.

Thank God the IMF's Support Group Director, Robin Touhy, encouraged me to go!

It was an amazing experience! Dozens of support group leaders from all over the U.S. and Canada attended, too. Some were first-timers, like me. Others had attended for many years.

But we had two important things in common.  We were all myeloma patients or caregivers, and we all volunteered our time this weeke
nd--and each month--to give our time and help our fellow survivors.

I was impressed with updates provided by IMF Chairman and Co-founder Dr. Brian Durie and a half dozen or more medical experts. Highlights included in-depth presentations about state-of-the-art advances in imaging, treating high-risk myeloma patients, and a series of updates by leading medical spokespersons from Millennium, Celgene and Onyx pharmaceuticals companies.

I was surprised to learn that Onyx, makers of the newly FDA approved proteasome inhibitor, Kyprolis, is already testing a similar oral chemotherapy drug. Moreover, I know from first-hand experience how exciting Millennium's new Sub-Q administration method for Velcade can be.

After taking Velcade by IV for only ten weeks, I was close to being forced to discontinue my treatment six months ago. The peripheral neuropathy was simply too intense. But about that time, my myeloma specialist switched me to Sub-Q Velcade.  It was like a miracle! My neuropathy didn't get any worse, I felt better and I spent far less time at my local infusion center, too.

Additionally, Millennium is also close to submitting its new version of an oral proteasome inhibitor, MLN9708.

But as exciting as all of this was, the human side of the gathering made the biggest impression on me.  What a wonderful, selfless group of dear friends I made this past weekend!

Even though it was my first Support Group Summit, I knew a number of the group leaders from visits I had made around the country to their groups to share my story with their members. And I knew most of the IMF staff from our trips together to American Society of Hematology (ASH) meetings in New Orleans, Orlando and most recently, San Diego.

We all worked hard, spending the weekend learning and sharing ideas together.

Sure, the pri
mary goal of the Support Group Leader Summit was to bring back lots of ideas and information to our respective support groups.  But in one short weekend, I was able to turn a dozen former acquaintances--along with more than twice that many survivors, caregivers and IMF team members that I just met--into what I hope will be life-long friends.

It was an experience I will never forget!

Feel good and keep smiling!  

Pat

A Patient Blog: Taking the Good with the Bad in 'Demon Dex'

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This week I am going to examine the many side effects of dexamethasone--and what we as patients can do to help minimize them.

In my first book, "Living with Multiple Myeloma," I feature a chapter titled, "Demon Dex."   Here's an excerpt:

Dexamethasone is the generic name for Decadron, a powerful corticosteroid. The good news is that it is inexpensive--and it works! Dexamethasone can be used to fight myeloma by itself, or in combination with other drugs.

The bad news is that Dexamethasone comes complete with a long laundry list of possible side effects. A very long list! Possible cardiac arrest, arrhythmias, cardiac enlargement, congestive heart failure, blood clots, impaired wound healing, hair loss, fluid retention and weight gain, weight loss, abdominal distention, loss of muscle mass, abnormal fat deposits, decreased resistance to infection and osteoporosis to name just a few...

Many dex-related side effects can be annoying. Some may even put your life at risk.

Two months into my treatment in 2007, I developed a pulmonary embolism and was forced to spend a week in the hospital. I have been forced to take prescription blood thinners daily ever since.

Most patients who use dexamethasone over long periods of time experience muscle wasting, retain water and begin to develop extra belly fat.  Not what you want to experience when you are an aging 56-year-old trying to maintain a positive body image!  And did I mention possible hair loss, a hoarse, raspy sounding voice, insomnia, extreme mood swings and feelings of anger and rage? 

But as I wrote above, dexamethasone works.  It enhances the performance of all three of the novel therapy agents: Thalomid, Revlimid and Velcade. Most patients take dexamethasone in pill form. Some patients receive dex by IV along with Velcade. But more often it is taken orally, especially now that many patients are taking Sub Q Velcade.

A day doesn't go by that I don't receive one or more emails or comments complaining about dexamethasone-associated side effects. Not taking dex isn't an option for most of us. It is too important to our therapy results to drop--at least at first.

So what can we do about it? How can we minimize dexamethasone-related side effects? See if any of the suggestions on this list help you:

  1. Accept it. You can hate taking dex. But for most of us, the benefits outweigh the risks.
  2. You may be able to minimize insomnia the first night by taking dex right before bedtime.
  3. Since most patients experience side effects for two or three days after using dex, taking an Ativan tablet on nights two and three works for me!
  4. Try to time activities to correspond with your dexamethasone cycle. I know a patient who loves taking dex because it reduces pain and inflammation in her joints, and the "upper affect" helps keep her active for two days. "I can clean my whole house and have energy left over!" she exclaimed. So take advantage of your side effects whenever possible. Can't sleep? Read that book you hoped to find time for. All wound-up and feeling energetic? Clean the garage or those overstuffed closets. Get the idea?
  5. Experiment with your dosing schedule. Of course, as is true with all medicines, changes in dose and schedule should be discussed with your doctor. Maybe my "before bedtime" tip doesn't work well for you. Doctors don't seem to care how you do it, as long as you take 40 milligrams of dex weekly. So maybe taking two or three 4-milligram pills daily works better. Or 20 milligrams on Tuesday and 20 milligrams on Thursday or Friday.
  6. Watch what you eat. Taking dexamethasone can raise your blood sugar dramatically. So don't eat a lot of sweets or other high carbohydrate foods the day after you take it.

Hopefully, realizing how important dex is to your lifesaving therapy regimen will help you deal with the unwanted side effects. But if things get out of hand, ask your doctor if you might be able to reduce your dose--or stop using dex altogether. Research shows dex loses its effectiveness over time. So if it has been a year or more since you started taking dex, asking your doctor to drop it may make sense.

Embrace the challenge and try and find ways to co-exist with "demon dex." Your life may depend on it!

Feel good and keep smiling!

Pat

A Patient's Blog: The Side Effect That Dares Not Speak Its Name

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Novel therapy agents are a mixed blessing. Yes, they are helping me and a number of my fellow multiple myeloma patients to live longer. And compared to the harsher cytotoxic agents that many patients with other types of cancer are forced to take, the side effects for most of us aren't so bad.

But with more of us using maintenance chemotherapy for longer periods of time, the side effects can become harder to manage. This is especially true for those of us who have had a stem cell transplant. I seem so much more sensitive to most any drug I take now.

Just because a side effect isn't life threatening doesn't mean it can't negatively affect our quality of life. Last week I focused on nausea. This week I would like to share some tips for how to control another common therapy side effect--constipation.

Isn't it funny how the same drug can have such a different effect on different people? For example, I know several patients who get diarrhea from using Revlimid®, Thalomid® or Velcade®.

But in my experience, it is much more common for patients who are using these chemo drugs to experience constipation. Mix in a variety of other medications--especially pain killers like oxycodone--and chronic constipation is almost guaranteed.

Let me share how I overcome my day-to-day constipation challenges.

Regular exercise can help. So can drinking lots of water. Yet as many of you may have already experienced, simply staying active and changing one's diet may not be enough. But it is the beginning to a long-term solution.

I start my day with a vegetable smoothie that includes spinach, tomatoes, carrots, celery, cucumbers, kale and milled flax seed. And I eat two or more vegetables at every meal.

Since I'm on a low carbohydrate diet, eating a lot of sugary fruit isn't practical for me. But blueberries, strawberries, raisins and a few prunes can also help.

But modifying what you eat by adding a wide variety of fiber-rich foods is only a start. I quickly learned that no matter how many vegetables I ate, it sometimes wasn't enough.

I never liked the idea of using a product like Metamucil or over-the-counter stool softeners for an extended period of time. Instead, I use a safe and simple substitute--magnesium.

Magnesium is the number one ingredient in a number of laxatives. It is inexpensive and has the added bonus of helping prevent cramping caused by taking Thalomid or Revlimid.

You can experiment with how many magnesium tablets to take and when. I'm not a physician, but I believe the worst that can happen to you if you take too much magnesium is a case of the "runs."

For me, a 100-mg tablet or two with each meal--along with my high fiber diet--is enough to keep me close to regular.
I already mentioned how I add milled flax seed to my morning smoothie. Flax seed is an amazing food, full of omega 3's and fiber. So is wheat germ. Sprinkling one or both of these concentrated super foods on your cereal is both good for you and can be a "constipation buster."

Over the years I have received a number of suggestions from readers about ways to overcome constipation. I would like to share a few of those with you now. Because what works for me may not work for you:

    • Drink a large hot glass of water with lemon slice every morning
    • 2 or 3 tablespoons of mineral oil daily
    • 2 or 3 tablespoons of coconut oil as needed. They also agreed adding flaxseed can help
    • Probiotics help prevent the problem before it occurs. Eating yogurt with natural cultures daily is the most common way to build up the live microbial organisms that should be active and present in everyone's digestive tract. I have been told that Kefir, sauerkraut and Asian foods like kimchee, natto, tempeh and miso can all be incorporated into your diet to help build up the natural digestive process
    • Using herbal teas containing rhubarb, aloe, senna or buckthorn
Try to remember that overusing laxatives and/or stool softeners can make the problem worse. This also applies to the herbal teas I mentioned above.

Also remember, multiple myeloma patients tend to take a lot of calcium, which can cause your muscles to contract and make constipation worse. Again, magnesium helps counteract this problem.

All set? Next week, I will suggest ways to deal with side effects caused by "demon dex," or dexamethasone.

Until then, feel good and keep smiling! 
 
Pat