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May 2012 Archives : Myeloma Voices

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Whether or not to seek a second opinion is a key question and a concern for all patients with myeloma.  This 10-step summary attempts to answer the "ifs, whens, and hows" related to seeking a second opinion.  

1.) Should you consider a second opinion?
It is essential to realize that a second opinion is always an option- whether it be a telephone "consult" or a complete re-evaluation with testing and recommendations provided.  The urgency varies, as does the ability to travel and absorb the added expense.  If in doubt, call the IMF Hotline to discuss options and potential help available.

2.) Do you need a second opinion right now?
Crucial questions that frequently deserve and require a second opinion are:
 --Do I have active myeloma needing immediate treatment?  Or do I have MGUS or smoldering myeloma, for which observation is the answer?
--What is the best first treatment in my case?
--Am I really relapsing and do I need new therapy?
At the very least, these questions require careful discussion, if not input from a myeloma expert.

3.) What should you do if treatment is planned?
In general, urgent issues should be treated immediately.  However, if the recommendations include:
--Major surgery
--Delay in potentially crucial supportive care such as: dialysis for kidney failure, IVIG for infection, kyphoplasty for severe pain/vertebral collapse, 
thenreach out for help and advice.
Beyond urgent issues, there is usually time to assess treatment options for myeloma.  This is an ideal time to get a second opinion.

4.) What about your main treating doctor?
Even if your main doctor is experienced and expert in the diagnosis and treatment of myeloma, be aware that there are always differences in philosophy and opinion.  The major difference is the "watch and wait approach" versus the "treat aggressively now" approach.  Along the same lines is the "control versus cure" controversy:does one aim for chronic disease control or does one attempt to achieve a cure.  If you and your own MD have the same philosophy, a single opinion can be fine.  However, even then, it can be enlightening to hear and discuss the opposite philosophy before reaching a final decision.  

5.) Is getting a second opinion rude or inappropriate?
It is rare for a primary MD to object strongly to a patient seeking a second opinion.  In fact the willingness to support the search for available options often strengthens the relationship with the primary MD.  Nonetheless it is wise and polite to openly discuss the desire for a further opinion to avoid any misunderstandings.  Couching the discussion in terms of "I think you are a great doctor..." (if true) or "we are concerned that you do not see that many myeloma patients..." (if this is the case) "but/so, we would like to seek a second opinion" is helpful.  You can proceed from there.

6.) Which expert should I see?
This is a key question, and the IMF hotline staff are well prepared to help you.  For example, it is well known that certain centers are very well equipped to do specialized testing to ensure a correct diagnosis and/or to ensure that baseline prognostic factors such as FISH results have been established.  The choice of where to seek treatment may be influenced by such practical concerns as local convenience or the availability (or not) of reimbursement by your healthcare plan.  Obviously, you may choose to pay out of pocket, if necessary.   

7.) What is expected from a second opinion consultation?  Important considerations are:
--Do I just want advice, or do I plan to receive treatment there as well?
--Am I planning to go to a center for treatment such as transplant or to receive a new drug in a clinical trial setting?
--Will I continue to see my primary MD?  This is typically the case.  After advice is received or new treatment completed, it is most common for patients to return to their local MD's care.
--Will I plan to return for periodic review?  Again, it is common practice to see the specialist to get follow-up advice for the local MD.

8.) When is the best time for a second option?
In general, early in the disease course is an excellent time to make sure the diagnosis is confirmed and initial treatment decisions are the best possible.  However, later can also be very helpful, especially at the point of myeloma relapse when new drugs are needed.

9.) How do I decide about one center versus another?
The best center for you depends upon the questions or needs, whether that be a one-time consult, or ongoing care, or the need for a transplant, or the need for a particular new drug available only in clinical trials.  Right now, gaining access to pomolidamide, carfilzomib, and/or elotuzimab, for example, could be very important.

10.) What about follow-up?
At the time of a second opinion, recommendations are made, and typically the "myeloma expert" will call your local MD and/or send a summary report.  It may be possible to proceed with a new course of action, or no changes may be required, or perhaps additional testing is needed.  Frequently, the initial consultation is followed by an ongoing relationship between the "myeloma expert" and your local MD.  This is ideal.  It may be that you have to work with both doctors to make the partnership run smoothly and to your advantage.  It is worth the effort and many times produces the best outcomes.

So there you have it!  I hope that these perspectives and suggestions will guide your decisions in thinking about seeking a second opinion.  If you need more specific advice in your case, please do not hesitate to contact the IMF at 800-452-CURE.

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Two weeks ago I had the opportunity to speak to a group of dedicated nurses at the 37th Annual Oncology Nurse's Society (ONS) Congress in New Orleans.

How do I know that the 200 nurses there were dedicated? Here's a clue: The program started at 6 a.m.!

I was barely there for two days, but I had the opportunity to meet some pretty amazing nurses. On the flight home, I had a chance to reflect on my trip--and to think back about some of the excellent nursing care that I have received since I was first diagnosed with multiple myeloma over five years ago.

A pair of local, small-town Wisconsin nurses, Dody and Cathleen, put up with me for two years while my doctors worked to stabilize my cancer--and  I tried to wrap my head around my difficult diagnosis.

I spent a lot of time at the Mayo Clinic in Rochester, Minnesota, early on. Teresa, Joan and Monica were three of the most helpful, caring and professional health care professionals that I have ever met. How fortunate I was to have their help throughout a complicated 15-day stem-cell harvest from hell. Ladies and gentlemen, I couldn't have made it without you!

And then there were the half-dozen or more BMT (bone marrow transplant) nurses who helped me through my stem-cell transplant last summer at Moffitt Cancer Center in Tampa. All things considered, the procedure went off without a hitch, courtesy of the bright and compassionate nursing staff. And trust me, I wasn't the easiest patient to work with.

I endured waves of nausea around the clock. My nurses worked hard to help me rest comfortably throughout. Heck, late one night my nurse even called a physician at home to get me the medication I needed to stop hiccupping!

More recently, the infusion nurses at Florida Cancer Research have helped make my ongoing therapy a lot easier to endure.

It probably won't surprise you to learn that the oncology nursing skill I value most is the ability to start an IV effortlessly, even in the most difficult-to-stick patients.

I have learned a lot about what makes a good oncology nurse from a patient's perspective over the years. And I'm convinced that while any type of nursing is difficult, oncology nurses handle some extreme challenges nearly every day.

  • For example, an oncology nurse needs to deal with the emotional challenge of sometimes losing patients who have become close friends. And that isn't getting any easier now that cancer patients are living longer. Sure, that means there may be a few more victories early on. But it also means more time to become close and emotionally attached to a patient, which can make it much more difficult if they do pass away.

  • Then there are the technical requirements of their craft. I have no idea how these skilled men and women keep chemotherapy dosing straight. It can't be easy working with so much toxic, dangerous medications day in and day out.

  • Most importantly, an oncology nurse needs to be a good listener. Getting to know and listening to their patients not only allows them to help keep a patient thinking positively, it also allows these nurses to make suggestions to the oncologist about things that they have noticed will help their patients get through each day.

  • Patient quality-of -life issues are also a primary part of an oncology nurse's job. By closely monitoring a patient's ability to deal with their medication, a well-timed nurse's suggestion to an oncologist can make a huge difference in a patient's quality of life while they undergo treatment.

All that's left to say to oncology nurses is thank you. Thank you for distracting me just before the needle goes in. Thank you for helping to keep me warm when the IV is cold. And most of all, thank you for being my friend.


Feel good and keep smiling!

Pat

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A return visit to Asia by the IMF team of me, Susie Novis and Senior Global Analyst Dan Navid this past week was an exhilarating blur of activities that instructed, impressed and touched us deeply. 

On Thursday morning we visited the sponsoring institution--Shanghai Changzheng University Hospital--with Prof. Jian Hou, head of the Myeloma Unit. Dr. Weijun Fu, one of Prof Hou's assistants, showed us the laboratory facilities. On this amazing tour we saw the SPEP/UPEP and IFE testing laboratory, then the outpatient clinic organizations. 


The testing lab was in the basement and reached by an elevator packed with sick patients and family members. In the corridor we were greeted by a large picture of an electrophoresis (SP) gel (SPEP), commemorating the famous professor who established this pioneering unit in Shanghai.

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Here, samples for testing arrive in a drop-off box: reports on tiny pieces of white paper are sent to the patient's chart or mailed back to the referring outlying hospital by regular post. In addition to the electrophoresis laboratory we saw the whole range of clinical pathology laboratories plus the Blood Bank --- all with gleaming new equipment of every conceivable type.

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Hundreds of Patients Lined Up for Appointments

The outpatient area of the hospital looked like New York's Grand Central Station. Literally hundreds of patients lined up for appointments in a frantic lobby area, where patients also picked up prescriptions (free with SS#) at the huge pharmacy sections.

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A very efficient dedicated testing area consisted of a series of rooms in which myeloma patients had their blood tested and their bone marrow sampled (right there off the clinic), and received an immediate morphology review and FISH (chromosome) testing. About half a dozen MDs cope with 30 to 40 patients daily. 

On Friday morning we headed to a Howard Johnson's Hotel--strange to see in China, but a so-called "5-star" property.  There we reviewed our cooperative agreement with China - the China Health Promotion Foundation (CHPF), with whom educational activities are authorized and planned. We discussed potential upcoming activities with the leading myeloma experts in China, Prof. Wen-Ming Chen from Beijing and Prof. Hou from Shanghai.

Asian Patients Are Younger and Have Different Disease Patterns

MD investigators flew in from seven countries (Hong Kong, Taipei, Japan, Korea, Singapore, Thailand, Taiwan) to participate in our Asian Myeloma Network (AMN) meeting, which followed. Prof. Kim (on behalf of Prof. Lee and the Korean team) presented the results of our database project, which has been accepted in abstract form for presentation at both ASCO and EHA in 2012. 

At the meeting there was much interested discussion about the results comparing Asian with U.S. (Mayo Clinic, for example) and European datasets. Of note, Asian patients are younger and have different disease patterns, such as more frequent plasma cell leukemia, extra medullary disease, as well as IgD type myeloma.  Despite limited access to many diagnostic facilities and therapies - including, for example, auto-transplant (ASCT) in China - in many of the countries the overall survival was a very respectable 52 months. This is not too dissimilar from general outcomes elsewhere. 

Plans for new clinical trials in Asia were then discussed, with specific protocol suggestions resented by Dr. Wee Joo Chng from Singapore. Active discussion ensued. There are different issues for drug access and approval in each country. Nonetheless, potential protocols in both the frontline and relapse settings were favorably received and it seems likely that with incorporation of the feedback and suggestions agreement will be reached to initiate new Asian trials - a first in the region.

Follow-up plans were made. A very enthusiastic and positive meeting.

A Lot of Contacts and Discussions Occur...Before Too Much Toasting Has Happened!

Friday evening was the opening ceremony for the 2nd Chinese Myeloma/Lymphoma Congress hosted by Prof. Hou.  The 1st Congress was held in Beijing last year, hosted by Prof. Chen. This 2nd opening ceremony was a lively affair, including a gymnastic performance (think Cirque du Soleil) and the normal "toasting," which involves everyone going from table to table meeting prominent invited guests/speakers and toasting with Great Wall of China red wine. It seems that this is when a lot of contacts and discussions occur - especially before too much toasting has happened!

After an exhausting day we slept soundly to be up for an early start. I gave the lead-off lecture at 8 a.m. back at the Howard Johnson's Hotel. I was followed by a number of international guests, including Dr. Douglas Joshua (an IMWG member) from Sydney, Australia.  At the first coffee break we were very excited to meet five of seven Chinese physicians who will be travelling to Los Angeles in August to participate in a tailored two-week educational course hosted by the IMF.  The group includes four women. All attendees are very excited about this opportunity, which the IMF is in the midst of planning

Very Emotional and Sometimes Difficult or Tragic Stories

The final event was the Patient Forum at Changzheng Hospital on Sunday morning.  Over 120 Chinese patients attended the event, held in a transformed lobby area using one wall as a huge screen with multiple TV panels. I co-hosted with Dr. Fu, and one of his colleagues gave an excellent lead-off "Myeloma 101" talk illustrated with really beautiful, up-to-date slides.

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This was followed by what started off as a "free for all" of questions, with everyone keen to have their question answered first.  This is when Susie stepped in to restore a degree of order to the chaos by taking questions row by row.  Through an interpreter and with the help of Dr. Fu, over two hours of questions ensued.  We heard very emotional and sometimes difficult or tragic stories. Everyone did their best to come up with helpful advice as well as what was equally important - the support coming from reaching out in an environment of hope.

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Numerous contacts were made. There will be many e-mail follow-ups.  Again, it was an exhausting day, but an incredibly rewarding day for all.

After what seemed like a blur of activity it was time to catch a direct flight back to LAX.  Pondering great plans for the future, we took off at 9:35 p.m. from Shanghai and arrived in Los Angeles at 6:10 p.m. the same day - before we took off!  We saved a day on our way back, which we certainly needed for our recovery!

Read Dr. Durie's earlier reports about the IMF's visits to Asia:

China: The New Frontier in the Search for a Cure for Myeloma, August 19, 2011

Report from the Inaugural IMF China Myeloma Symposium, October 20, 2007 

A Patient's Blog: Figuring Out a Maintenance Strategy

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In my last post, I wrote a bit about my background and set the stage for an important patient goal I feel very strongly about.
  
Since many multiple myeloma patients are living up to a decade or more, I believe that it is vitally important to work with your healthcare team in creating a long-term treatment plan.

To review, most doctors don't feel comfortable doing this. They like to take things one step at a time and deal with whatever happens next later. In my view, this can be a big, big mistake. Because while taking things one day or one treatment at a time can help ease a patient's anxiety, it doesn't allow your doctors to plan today's treatments to complement those that a patient may need in the future.

My case is a perfect example of this.  Let me share it with you.

More and more myeloma patients are choosing to delay their auto stem cell transplants until first relapse--or later. That's the path I chose over four years ago.

I still feel that I made the right decision by waiting. But after undergoing my first autologous SCT last July, I am discovering a few factors that my doctors and I never considered back in 2007.

We harvested enough stem cells for three possible transplants.  Revlimid worked like magic for me.  It took me less than a year for Revlimid and dexamethasone to bring me to a complete response (CR) that lasted over three years.

Wonderful!  It wasn't always easy.  My peripheral neuropathy (PN) slowly worsened.  And my neutrophil (ANC) counts dropped to very low levels and stayed there.  But hard to complain about three years of CR!

But--and there is a but--no one anticipated what I would do after I eventually underwent a SCT.

Unfortunately, my transplant didn't go as planned.  My M-spike actually jumped significantly at the three-month mark.  My transplant had made things worse!

But it wasn't a total loss.  My RVD therapy (Revlimid, Velcade and dex) worked quite well after the fact as a consolidation therapy.  As I write this today, one lab shows that I have no M-spike.  Another lab shows a 0.1.  Good.  Very good!

But now it is time to figure out my maintenance strategy.  Trouble is, Revlimid is the only drug with a proven maintenance track record.  And although my transplant may, in fact, re-set my myeloma's susceptibility to Revlimid, it can't be counted on as my primary maintenance agent.

So I will use Velcade, right?  But as of now, no one has any published data about when and how often to use it. (Editor's note: Dr. Heinz Ludwig and other members of the IMF's International Myeloma Working Group referred to Velcade maintenance in this article published in the journal "Blood" on Jan. 23, 2012.) And the company can't say.

I look forward to hearing answers to questions about Velcade maintenance during the June 13, 2012 IMWG Teleconference Series presentation "Making Sense of Treatment." Dr. Brian Durie says that Velcade maintenance will be one of the topics debated at this inaugural event by a discussion panel that includes him, Dr. Antonio Palumbo, Dr. Paul Richardson and Dr. Jes�s San-Miguel.

Had my original specialist anticipated the maintenance quandary I find myself in today, maybe I would have started on Velcade and dex, or RVD for induction and Velcade for maintenance after I achieved CR. 

So, that leaves my myeloma specialist and medical oncologist--and me of course, being an informed and actively involved patient--to put our heads together to help come-up with a maintenance plan.

Remember how I said doctors don't like to plan ahead?  One way to help get them to participate is to be working with more than one doctor--strength in numbers, maybe?
 
In an upcoming post, I will share their thoughts--and the plan that we have set together.

Feel good and keep smiling!

Pat

Myeloma Caregiver Wife Blog: Riding Tandem

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In the Fall of 2004, Mr. C and Ms. J were riding a bicycle built for two around Greece, celebrating Ms. J's return to health and strength after her multiple myeloma diagnosis in 1999 and her stem cell transplant in 2000. 

Alan and I were in Greece at the same time, celebrating our 15th wedding anniversary. But we hadn't yet met Mr. C and Ms. J, and hadn't ever heard of multiple myeloma. For us, those two things wouldn't happen for another year, when in the Fall of 2005, back in Portland, Oregon, Alan was also diagnosed with multiple myeloma.

In 1999, Ms. J was diagnosed with MM after several of her vertebrae collapsed when she was moving a large vase in their home.  Mr. C launched himself into the battle to save his wife, who at the time was given a 6-month prognosis.  He did a lot of research, collecting 7 binders full of MM notes and data. Mr. C is a "Caregiver's Caregiver"  He bought stock in Celgene, the manufacturer of Thalidomide, the latest (at the time) breakthrough drug for multiple myeloma, in hopes of getting the current information on what Celgene was developing, as one of their shareholders. When C & J determined that their best option was a stem cell transplant, Mr. C offered to buy their local hospital the equipment to harvest the stem cells. In 2000, stem cell transplants were a relatively new and experimental process in Portland.  

For C & J, the transplant was victory. Ms. J is a "Poster Girl" for successful myeloma stem cell transplants: It's now been 12 years since she had hers, with no follow-up drugs or treatment since 2000.

Through a serendipitous connection, Mr. C and Ms. J became the first fellow travelers Alan and I met after Alan's diagnosis, and turned into our first guides. They invited us over to their home to share their story and answer our questions. During that evening of listening to their saga, and wealth of fascinating anecdotes, they both shared a warning with us: After the successful treatment, with so much to celebrate and be thankful for, they nearly divorced. The strain of the intensity of the medical crisis had left them in very different places. Mr. C was vehemently protective and Ms. J was withdrawn and overwhelmed by what she had been through. 

All of us become terribly caught up in the battle with multiple myeloma, we fiercely support and fight for our partners as well as for ourselves.  Caregivers become hyper vigilant, and it's assumed patients will always be grateful for the help and love they receive, but it isn't simple for any of us. Often we become so accustomed to our roles that we can't re-adjust when it's time to resume "normal" life.  C & J were to see how behavior patterns that were so necessary in the time of distress were pulling their marriage apart when the need for struggle was over. Fortunately they recognized the problem and were able to talk to each other. They found support groups and got help from a cancer social worker from the hospital.

Many of us don't get to that safe place where the myeloma is no longer the biggest fight of our lives. We move forward to keep from falling, seeking that balance, and a way to ride tandem for the duration of the trip. We both are pulling more weight than we ever thought we could as we negotiate the road ahead together. 

As Lance Armstrong said, "It's not about the bike."

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Hello!  My name is Pat Killingsworth, and I am a myeloma survivor and medical writer. 

I am excited about sharing my experiences as a patient and patient advocate. 

I have learned a lot since I was first diagnosed in the spring of 2007.  Looking back, I can see how difficult it is for a patient, caregiver--and even a patient's doctor--to anticipate what might be best in the future.

Initially, everyone involved tends to be focused on the here and now.  The priority is almost always to get a newly diagnosed patient's multiple myeloma under control. 

But while that reaction may be understandable, it doesn't make it right!

Doctors tend to be reluctant to design long-term treatment plans.  After all, if there is one thing that's predictable about multiple myeloma, it's that it is unpredictable. 

So when a patient asks, "Doctor, what comes next after this works--or doesn't work?" The doctor's response is almost always, "Let's take it one step at a time."

Again, even early-on this is a mistake.  Maybe not during the initial meeting or two.  But after induction has started, and everyone has a better idea about how the new patient's myeloma is responding, I strongly believe that is time to start developing a long-term myeloma treatment plan.

In a perfect world, this plan will be developed by not only your local medical oncologist, but a myeloma specialist, too.

Working together, a patient's myeloma team can create a treatment plan that takes into account a patient's quality of life and treatment goals.

More and more myeloma patients are living seven, eight, ten years--or even longer.  Decisions made during the first year of treatment can affect how a patient is treated if and when myeloma relapses years down the line.

Until next week, remember to feel good and keep smiling! 

Pat