We are international
Donate

Myeloma Voices

ASH2014.jpg

To prepare for the upcoming 56th annual meeting of the American Society of Hematology (ASH), which will be held in San Francisco Dec. 6- 9, the IMF's Medical Editor Debbie Birns and I poured over 800-plus scientific abstracts related to myeloma that will be presented at the event.  While this year there doesn't appear to be the sort of news that will reset the needle in the myeloma landscape, a few trends stand out.

Targeting specific populations: After years of excellent outcomes with the novel therapies, researchers are now looking to fine-tune treatment protocols to maximize effectiveness in specific categories of patients. Studies presented this year consider patients who are young (#2059), elderly (#178; #81) with renal impairment (#2112) , African-American (#2030), obese (#2048), long-term survivors (#2019), and those with co-morbidities (#1301; #2136). This year there are also data in patients with both amyloidosis (#35) and POEMS syndrome (#36).

Diagnostic testing and monitoring protocols: Numerous studies to be presented at ASH 2014 examine the diagnostic efficacy of myeloma tests, including PET-CT (#3371; #3382), Freelite (#180), Hevylite (#3383), and sensitive Flow-MRD monitoring (#3390), among a total of nine abstracts dealing with MRD assessment.

New combinations: Fine tuning of novel combinations is an important aspect as noted above. Perhaps the most important presentation at ASH this year is the "ASPIRE" trial dataset which compares Kyprolis Rd with Rd alone (#79) in the 1-3 relapse setting. The more frequent and deeper responses with KRd will be discussed. Other novel combinations include Kyprolis given once/week (#175) as part of the KCd regimen (Kyprolis/ Cytoxan/ Dex) and reduced dose RVD (Revlimid/ Velcade/ Dex) so called "RVD Lite" for elderly patients (#3454). A new interesting combination is alternating VMP with Rd which is also very active in the elderly population (#178).      

Pipeline drugs:  A Phase 1-2 study (#82) of the oral proteasome inhibitor ixazomib in combination with lenalidomide and dexamethasone shows promise in newly diagnosed patients. Separate abstracts show benefit with Ixazomib used as maintenance (#82) and in patients with amyloidosis (#3450). Also presented will be data on selinexor (#4773), elotuzumab (#4762), ibrutinib (#31), oprozomib (#34), panobinostat (#32; #33) and the anti-CD 38 agents daratumumab (#84; #178; #3474) and SAR 650984 (#83; #4729).

SNAPSHOT OF IMF ACTIVITIES AT ASH 2014

While in San Francisco, the IMF will host several educational events, three of which will be live-streamed for viewing by those unable to attend the ASH meeting. I strongly recommend tuning in to learn first-hand what myeloma researchers are identifying as the most compelling data presented.

Critical Issues Need Answers:
Providing Best Options for Myeloma Treatments in 2014
Friday, December 5, 2014
12:00 pm PT
www.ash2014symposium.myeloma.org (live and archived)

The symposium will have a unique program format that includes "point-counterpoint" presentations and interactive case discussions. Each point-counterpoint session will begin with an initial clinical question followed by the presentation of two alternative views. Topics to be considered:

- When to Treat Patients With Smoldering Myeloma
- Assessing Response and Minimal Residual Disease Following Induction Therapy
- Incorporating Maintenance Therapy into Treatment Strategies
- Best Choices of Salvage Therapy in Relapsed/Refractory Myeloma

News Briefing:
The Latest on Blood Cancers - From Advances to Patient Advantages
Sunday, December 7, 2014
8 pm PT
www.myeloma.org (live and archived)

I will serve as moderator for this event, hosted by the IMF, the MDS Foundation on behalf of the MDS Alliance, the Lymphoma Research Foundation and the National Patient Advocate Foundation. A panel of leading blood cancer experts, advocacy organizations and patients will put ASH data into perspective, showcasing how scientific advances help patients.

Making Sense of Treatment:
The International Myeloma Working Group (IMWG) Conference Series
Monday, December 8
8 pm PT
www.imwgconferenceseries.myeloma.org (live and archived)

I will moderate and join with my colleagues and IMWG members Drs. Joseph Mikhael, Dr. Ola Landgren and Dr. Antonio Palumbo to tackle the key questions currently facing myeloma doctors and patients in light of the latest research presented at ASH.

2 Comments

What your opinions regarding a clinical trial at the James Cancer Center at Ohio State University regarding Pomalyst Capsule 4mg, ACY-1215 12 mg/mL and Dexamethasone. Acy-1215 have not been approved by the FDA.

Leave a comment

20141104_102954.jpg

The first week of November 2014 saw the IMF co-hosting three Patient & Family Seminars in Norway and Denmark, where leaders from international patient associations came together with acclaimed speakers to discuss the latest in myeloma news and treatments. It was an opportunity for the IMF to make international patients aware of our resources and bring the global myeloma community even closer together. I had the pleasure of attending the meetings, and now you can follow along on my journey with this recap of events.

The Patient & Family Seminar in Trondheim, Norway kicked off on November 1st with Dr. Anders Waage of the Norwegian University of Science and Technology in Trondheim, moderating/translating and Dr. Angela Dispenzieri from Mayo Clinic leading a discussion on monitoring, potentially preventing, and treating complications of myeloma. New treatments for myeloma were also a hot topic during this meeting. The Norwegian patients really appreciated having a speaker from abroad come to their city to speak about myeloma. In fact, there was such a demand for attendance that the meeting actually hit capacity at almost 200 participants, and a few had to be turned away.

Other presentations delivered during the seminar included:

"Pain and Physical Activity with Myeloma," presented by Janne Anita Sundfær, RN
"Awareness and Coping," which was presented by Tone Hansen, Director, Henie Onstad Kunstsenter, Høvikodden. Norway. Tone is also the leader of Blodkreft Foreningen (the Norwegian patient association) and an excellent psychologist. Her talk was uplifting for both patient and caregivers.
"Clinical Studies in Norway for Patients Diagnosed with Myeloma" from Dr. Waage
"Learning and Mastery Groups for Patients Diagnosed with Myeloma," from Turid Almvik, RN
"Emotional and Physical Effects of Recurrence," presented by a Celgene representative

Though many of the aforementioned presentations were medical in nature, designed to educate the participants about various aspects and stages of myeloma, there was much room for individual patients to ask questions and share their stories, as well.

The Patient & Family Seminar truly brought together patients and medical professionals alike.

20141104_113950.jpg

On November 4th, a second Patient & Family Seminar was held, this time in Oslo, Norway, with 208 people in attendance. Some of the attendees were newly diagnosed patients who were participating in a meeting for the first time. As such, after Tone Hansen, the leader of the Norwegian Patient Association (Blodkreftforeningen) started the event, the first presentation was on the introduction of diagnosis. Dr. Nina Gulbrandsen, Professor and Chief Physician, Oslo University, Rikshospitalet, shared her expertise in the subject.

The other presentations in Oslo included Dr. Fredrik Schjesvold's "Current Treatment for Newly Diagnosed Pateints and Treatment at Recurrence," Tone Hansen's "Awareness and Coping," Celgene's "Emotional and Physical Effects of Recurrence," and Dr. Waage's "The Norwegian Research Center: Jebsen's Centre for Myeloma." Patient stories were also shared.

Following the second successful Patient & Family Seminar in Norway, I attended two physician meetings.

The following day in Oslo, Celgene held a physician meeting. Approximately 50 physicians took part, including some speakers who were part of the prior Patient & Family Seminar. Dr. Dispenzieri repeated her presentation of "Diagnosis and Treatment of Myeloma," which created a lively discussion during the Q&A section.

A physician meeting held at Odense University Hospital in Denmark followed the next day, on November 6th. This time, approximately 40 physicians attended, many of whom worked with Syddansk Universitet's Dr. Niels Abildgaard. This time, Dr. Dispenzieri presented "Virotherapy in Multiple Myeloma-- The Mayo Experience" and produced yet another lively discussion and exchange of information regarding Mayo Clinic's practices.

20141107_144315.jpg

The final event of the week, the Patient & Family Seminar in Middelfart, Denmark on November 7th, drew 210 participants in person but also included a virtual contingent, as the meetings were live-streamed to allow additional patients to sit in.

The attendees started the event by singing a beautiful biblical song, and then Ole Dalriis, Chairman of the Danish Myeloma Foreningen, and Bibi Moe opened the meeting by introducing the IMF, and I carried on by introducing the day's activities.

Dr. Abildgaard acted as moderator and translator for Dr. Dispenzieri, who presented "Monitoring and Management of Myeloma Treatment," which produced a lively discussion. The Danish patients were very educated about their disease, and their questions were thoughtfully formed.

The Patient & Family Seminars I attended in both Norway and Denmark provided supportive feedback and a large outpouring of gratitude toward the IMF. I am very happy to share that relationships are strong. It was a delight to work with both Blodkreftforeningen and the DMF, and I am already eagerly anticipating next year's events! We truly are One Myeloma Nation.

Nadia Elkebir
IMF Director of Europe and the Middle East

Leave a comment

DurieBlog_Stemcellv2.jpgMore than two dozen experts from around the world gathered in Minneapolis, Minn. Oct. 27, 2014 to assess the current landscape for autologous stem cell transplant (ASCT) as an option for myeloma patients who have relapsed. "Salvage" transplant--despite its rather gruesome-sounding name--offers an effective treatment choice for patients who have had a positive prior response to transplant.

During this era of novel therapies, salvage transplant has become an overlooked option. Presentations at the recent meeting, held under the auspices of the American Society of Blood and Marrow Transplantation (ASBMT), the Blood and Marrow Transplant Clinical Trials Network (BMT CTN) Workshop, the National Marrow Donor Program, and the International Myeloma Foundation, suggest that it is time to take a second look at the uses and recommendations for salvage transplant--both the name, perhaps, and the process.

We know that transplant has clear benefits as a high dose consolidation therapy for patients in the frontline setting, as described in the 2011 publication in the journal Blood, International Myeloma Working Group (IMWG) consensus approach to the treatment of multiple myeloma patients who are candidates for autologous stem cell transplantation.  The Minnesota workshop provided a wonderful opportunity to re-examine of the merits of second transplants as well.

The workshop was co-chaired by Dr. Sergio Giralt (Memorial Sloan Kettering Cancer Center) and Dr. Ed Stadtmauer (University of Pennsylvania School of Medicine, Abramson Cancer Center) representing the Center for International Blood & Marrow Transplant Research (CIBMTR) and the BMT CTN, and myself, representing the IMF and the IMWG. Other organizing committee members were Drs. Hari Parameswaran, Phillip McCarthy and Marcelo Pasquini.

Two of the key presentations during the workshop were:

Dr. Stadtmauer's excellent overview of the role of salvage ASCT. The data from the International Bone Marrow Transplant Registry (IBMTR) were compared with other reported studies. Outcomes correlated with the length of the first remission with ASCT, as well as the depth of response with both the first and second (salvage) transplants. To put the results in perspective with regard to other potential therapies for relapse patients, average remissions were about 1 year and subsequent overall survivals approximately 2-4 years.

Prof. Gordon Cook's (University of Leeds, UK) presentation of the results of his Myeloma X Trial. Salvage transplant with melphalan 200mg/m2 (ASCT) was compared with simply Cytoxan by mouth (400 mg/m2 once/week for 3 months). Starting in 2008, 174 patients were randomized. The full results were published recently in Lancet Oncology. It was very helpful to see the benefit of salvage ASCT in this randomized setting. The data also confirmed the importance of length of prior remission and depth of response.

After breaking into four work groups, workshop participants presented their ideas and recommendations, which included:

  • A need to summarize current knowledge
  • Risk stratification of patients at relapse
  • Assessment of the role of minimal residual disease (MRD) measurement after ASCT in the relapse setting
  • Studies of ASCT at different time points
  • A need for comparative effectiveness research (ASCT at relapse versus other options)

With priorities agreed upon by all of the workshop participants, the meeting concluded with a commitment to prepare guidelines promptly under the auspices of the IMWG and also to set up several planned studies. The IMF team of Lisa Paik, Diana Wang and myself were very pleased to be in attendance and will be working closely with the transplant team members to ensure rapid progress to achieve the planned outcomes. In addition, follow up meetings will occur as feasible at the Annual Meeting of the American Society of Hematology (ASH), the IMWG Summit and other venues.  

So, as always, stay tuned.

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

2 Comments

As a tandem ASCT recipient, now in complete remission almost 2 yrs, it's good to see the data continues to be strong for "salvage" transplant. I can only hope those who choose the second ASCT can achieve as strong a response as I did. Certainly wish the name could be changed! I'm looking forward to the time when all of us in remission can qualify for assessment using the new flow cytometry to identify if we are in remission or maybe have achieved a cure. I dare to hope!

Leave a comment

DurieBlog_PanaV2.png

Today's Oncologic Drugs Advisory Committee (ODAC) hearing convened in an optimistic fashion with many in the myeloma community expecting there would be a recommendation for approval of panobinostat, an HDAC inhibitor used in combination with Velcade and dexamethasone. Publicly available data indicated a 3.9 months progression-free survival (PFS) or remission duration benefit with the three-drug panobinostat combination in patients who had been treated with 1-3 prior therapies. Note was made of significant toxicities, including low blood platelet levels (56.7%), diarrhea (25.4%), and fatigue (24.6%). However, going into the hearing, it was felt that the benefits outweighed these types of toxicities. From the myeloma patient perspective, there was the hope that panobinostat--representing a new class of drugs, the HDAC inhibitors--would be added to the myeloma treatment armamentarium. IMF staff and team members were at the ODAC hearing to affirm the continued unmet need for new drugs to treat myeloma.

Unfortunately, the presentation by Barry Miller, FDA Senior Clinical Analyst, dashed these hopes and expectations rather quickly. Miller pointed out that "missing data" was the main reason the FDA staff asked for the ODAC review. A large amount of data was unavailable or "censored," often because patients withdrew from the trial. The question was "Why?" Did the patients withdraw for incidental reasons (minor problems, trial logistics, etc.) or major toxicities, or even unexpected on-trial deaths?

As pointed out by Dr. James E. Liebmann (ODAC panelist from University of Massachusetts Memorial Medical Center), there was a disparity in "on-treatment deaths" in the panobinostat arm of the trial. The uncertainties about "censoring" apparently had led to four separate estimates of the PFS duration: 3.9 months (the duration reported); but also 2.2. months; 3.7 months, and 1.9 months. The FDA's own analyses gave a PFS difference of 2.2. months (9.9 months versus 7.7 months): rather disappointing compared to the 3.9 months provided by Novartis and their IRC (Independent Review Committee). IRC member Dr. Paul Richardson was unable to explain the reasons for the censoring to the satisfaction of the ODAC reviewers. Dr.  Richard Pazdur (Director of the FDA Office of Hematology and Oncology Products) himself raised the issue of censoring as an important concern.  

Ultimately, Dr. Richard Pazdur summarized what appeared to be the prevailing opinion of the ODAC reviewers.

            "PFS is not the question, there's clearly some benefit. ... The question is what is the magnitude of benefit and does it warrant the toxicity."

This perspective reflected the vote of 5-2 against a recommendation to the FDA to approve panobinostat. Dr. Liebmann also summarized the difficulties faced by the panel when confronted, as they were, by patient advocates (Robin Tuohy, Michael Tuohy and Diane Moran) including a woman who had benefitted for five years on panobinostat. He said, "First, this is a very difficult decision... this agent does have some activity ... and can be useful in this disease. But, "I think the toxicity outweighed the marginal benefit in PFS."

He went on to say that we should not give up on the drug or class of drugs, and certainly this is the case. Although it seems very unlikely that the FDA will go against the ODAC recommendation, it may still be possible that Novartis can answer the questions that were raised.

This is certainly a wake-up call for the myeloma community. What are the expectations for new drugs moving forward? Do we need to set the bar higher and try to achieve a much greater benefit, especially in the setting of important toxicities? My sense is that all involved will be recalibrating and setting their sights on longer remissions and lesser side effects - key needs for myeloma patients everywhere!

Stay tuned and we will keep you posted as many new drugs move forward in trials and hopefully give the benefits we all want to see. 

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

6 Comments

Dr. Durie,

I was headed for a stem cell transplant but did not meet final requirements due to low white count and high myeloma counts. I started a Thalidomide, Dex therapy which is improving the myeloma count.
My doctor says if this continues I could be eligible for the stem cell program again at Seattle Cancer Care.
My question, could I continue on a drug therapy indefinitely or is stem cell the only hope for remission.

Is this possibly a final rejection of panobinostat's use as
a drug for relapsed/refractory myeloma? Are there other
trials using panobinostat possibly in combination with some other drug that could lead to its gaining FDA approval? I
hate to see a promising new drug, which this one has been,
tossed because of some faulty collection data or some
irregularity in reporting.

Is SPN considered "nothing?" That was the side effect of injected Velcade for my husband.

Leave a comment

IMWG+tagline 2014-lyrs_a1_Thumb.jpg

For some time, members of the International Myeloma Working Group (IMWG), the IMF's research division, have been trying to identify and describe a group of patients without CRAB features.  Finally, Dr. Vincent Rajkumar, my co-chair in this project, has succeeded in bringing together the data, plus ideas and opinions from the IMWG members, to create new diagnostic criteria for myeloma. The criteria define a new "Pre-CRAB" group of patients who need treatment. A paper detailing the IMWG's updated criteria was published today in the journal Lancet Oncology.

This step forward has many important implications, not the least of which is the expectation that earlier treatment will lead to better outcomes!  This is the central idea of the IMF's signature Black Swan Research Initiative, in which early treatment is combined with close assessment of low levels of residual myeloma--minimal residual disease (MRD) testing--to push for therapy to achieve an MRD negative status that can lead to a cure.

The IMWG's updated criteria represent no less than "a paradigm shift in myeloma," said Dr. Rajkumar in a video interview.  "We are now willing to treat myeloma before symptoms happen. This is a big deal."  To read the IMF's announcement about the IMWG's updated criteria CLICK HERE

6 Comments

If it is so crucial I was going to forward info to my physician but when I went to the Lancet Oncology link they want me to pay $31.00 for this information. This info should be free in my opinion to spread the word.

Dr. Durie - Re: Early MM Diagnosis

My own history is as follows.

In December, 2003, a blood test showed that my hemoglobin had suddenly dropped from normal to about 110.

In March, 2004, I spent 3 weeks with my wife, staying at our daughter's flat in North London, England. During my stay there, and touring London, I had a bad cold, going through about a full box of Kleenex a day.

Immediately after our return to Montreal, I left in my little black 1958 TR3A sportscar for Virginia where the other Triumph owners were racing their TRs. During that trip I was camping. All seemed to be going well, but I seemed dazed and confused at times. I had offered to be in the pit crew of a good friend from Maryland and found it difficult to help him to solve his mechanical problems. At the evening reception, the food was good and the 50's music took me back to my younger days while I danced the jitterbug for hours. But suddenly, I felt weak.

When I got back to Montreal - a total of about 2000 miles all told, I still felt quite well, but by August when I could still mow the lawn in 45 minutes, I felt slower and slower. In September, it would take me hours and hours to mow the lawn - with long periods needed to rest and regain my strength. I assumed my hemoglobin was dropping even lower. I was anemic.

At the beginning of October, 2004 I was diagnosed with MM & Amyloidosis and went through 3 treatments of "VAD". Then, in mid-December, 2004, I was told that I was in full remission.

Since I have been cured now for what I guess to be - the last 8 years, I feel that the early treatment was important to me - now being fully cured with no treatment for MM or Amyloidosis for the past 8 years.

Cheers Don Elliott

2013, I was 60 years old. Sever back pain started.
My family doctor thought it was common low back pain
And sent me to physical therapy. Bone density test
Didn't show any major issue. Bone density report indicated
Some micro fractures presents. I was not even contacted by my
Family Doctor for investigation into micro fractures on my
Spine and cage rib. My family doctor didn't even call me for 2nd consultation. When contacted after the fact said it is difficult to see cancer cells
At blood level test where they commonly test for. My back doctor interpreted radiologist
Report saying micro fractures are actually arthritis and
Suggested fusing spines vertebrae. Pressed for
Steroids injection before fusing.
I initiated 2nd opinions where new Doctor told me I have multiple.
It is very sad when medical system fails to
To save your life. Thanks

Leave a comment

DurieBlog_Cure.jpg

In a recent paper in the journal Blood, Dr. Bart Barlogie and his team at the University of Arkansas in Little Rock claim they are "Curing myeloma at last: defining criteria and providing the evidence." This is a bold statement.  I would argue that while the paper provides a statistical/computer model, achieving and documenting true cure demands a follow-up of individual patients and cannot be predicted by a computer model.

But let's examine the approach taken here more closely to see why. In order to comment intelligently on this paper, one must search through the details of the methods used to define cure and provide the "evidence."  The term "cure fraction" is used in the paper.  It is derived from a combination of relative survival estimates (myeloma patient survival versus a patient without myeloma) and a complex computer model derived from a statistical approach used in 1982 for breast cancer. Is this a valid statistical approach to derive a "cure fraction"?  The authors of this statistical paper emphasize the constraints of the approach.  Two risk groups are required for the statistics to work.  Dr. Barlogie divides his patients into "high" and "low" risk so that this approach can be applied, but as readers are probably aware, the Mayo Clinic mSMART approach divides patients into three risk groups.  Which is correct or better?  We don't know.

After careful review, it appears that the "cure fraction" from the Little Rock "model" is considered to be: patients with "high risk" disease by gene expression profiling (GEP) who remain in complete remission (CR) for > 5 years and "low risk" patients by GEP who stay in CR for > 10 years.  Are such patients cured?  Clearly they are doing well, but the risk of relapse is not zero.  The label of "cure" is still just a statistical prediction, which is treatment and model dependent.  The outcome for each individual patient is determined by individual staging and prognostic factors, as well as non-myeloma related co-morbidities. Although calculating a "cure fraction" using the proposed model does allow comparisons between the different "total therapy" regimens used in Little Rock, it does not affirm that individual patients are actually cured. 

What is more helpful is to offer criteria that can predict a likely very good outcome at the start of therapy and/or early in the disease course.  This is the strategy of the IMF's Black Swan Research Initiative.  Using MRD assessment as a primary tool, it is possible to predict likely long remissions with complete remissions, especially with CR or stringent CR for patients with initial stable response.  Without claiming that patients are necessarily "cured" (meaning that there will never be a relapse even after 10 years), one can predict chronic disease control, which is most helpful to individual patients.  Thus, for example, in a young patient with good risk features--(ISS Stage I), normal F.I.S.H. testing (no t[4;14]; 17p-; 1q+ ), and normal LDH at baseline who achieves stringent CR and flow MRD-negative status--a very good outcome can be predicted.

The total therapy regimens clearly produce excellent outcomes for some patients. But in 2014, most patients and investigators are looking to novel therapy/transplant regimens that can be successful without the automatic double transplant approach plus other elements of the total therapy program.  The pioneering value of total therapy has triggered the search for other ways forward that can occur within the Black Swan Research Initiative, which allows use of MRD assessment to achieve the best outcomes.

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

16 Comments

My husband has been on revilimid (25) for four years, keeping him some what stable. In the last four months he has passed out on exactly day 28 of his cycle. All possible tests are done with every test negative. Have you ever heard of this happening to anyone else? We are desperate for an answer as his doctors do not see a connection. Thank you.

Dr Durie , I'm 63 yrs old now. At age 38 after suffering for a full year through misdiagnosis, I was diagnosed with MM and told I had 6 months to live. I won't go into all that happened in the next month but my first oncologist here in Daytona Beach Florida, was enough to put me in remission an send me to the amazing Dr Bart Barlogie in Little Rock Arkansas! I've had 2 bone marrow transplants and 1 tried stem cell transplant plus mega radiation therapy and 12 surgeries. I was also diagnosed with thyroid cancer 4 years ago and had radical surgery. I had such a high tumor mass by the time I was diagnosed that my whole right side was destroyed. I walked with a cane, (as much as Dr Barlogie hated it lol) till 2 years ago. I'm now in a wheelchair. But by the grace of God and 3 fantastic Dr's ( (DR JAGGONOFF ALSO) I'M STILL HERE. Just wanted to tell my tale in short for as you well can guess there's plenty more tale lol I love helping other MM patients an have utmost respect for you. Thanks for reading. Sincerely, joy tordini

A fellow myeloma patient had the double transplant at U of A. She lasted less time than I have with a single transplant at Stanford. She went through several clinical trials and other treatments before passing away this year. I'm going to be 6 years past transplant in Feb 2015.

I'm starting to think that this disease is very different for all of us depending on factors I do not understand.

Hello Dr. Durie, my husband is 43 yrs old and was diagnosed Feb 2013. He had 16 cycles of induction therapy and had a SCT in Aug 2014. Before SCT he had achieved stringent CR halfway through the 16 cycles. What would your recommendation be for maintenance flowing that is our next step. Your input is appreciated - thank you!

Just for clarification, I suspect there's a typo in the 2nd paragraph that defines "cure fraction". The paragraph states the denominator as "patients withou myeloma" but I think this should read "patients WITH myeloma".

My question: Since risk factors can change with treatment, is high-risk in the Arkansas calculation determined at diagnosis or after TT therapy? BTW, can GEP results also change before/after treatment?

I have been myeloma free for 1 year. After Rev, Dex and Carfilzomib via Dr. J and the U of Mich Cancer Center. Optimistic but realistic that genetics, chemistry and luck all play a role. Just thankful to have the quality years and quality care I received.

I am 13 years from diagnosis and in substantial remission with paraprotein around 4 (from 21) but at 70 years the issue is always the side effects of the treatments I have endured including transplant and thalidomide - so "cure" is a relative word for me - as my doctor says - "you will not die of myeloma but of the side effects of the treatment"! So I recently had a stroke 'out of the blue" and I have major skeletal/tendon pain issues as well as heart palpitations (needing a pace-maker) - all of which may or may not be related to my treatment-who can ever know- but given my family history i am "sicker" than any in my family tree has ever been at my age. So if we have a "cure", I applaud your call to now encourage less aggressive ways to arrive at that 'cure".

In a paper published today in the journal Cancer Cell, the researchers report how the drug, known as DTP3, kills myeloma cells in laboratory tests in human cells and mice, without causing any toxic side effects, which is the main problem with most other cancer drugs. The new drug works by stopping a key process that allows cancer cells to multiply.
Our clinical trials, the first of which will start next year.....

Kindly comment on this advance from the journal Cancer Cell.

Leave a comment

The IMF Co-Hosts Patient & Family Seminar in Slovakia

| 1 Comment
Slav1.jpg

On October 3rd and 4th, in conjunction with Slovak Myeloma Society (SMS) & Patient Club, the myeloma patient association of Slovakia, the IMF co-hosted the second annual Slovak Patient & Family Seminar in Liptovsky Jan in the beautiful region of Low Tatras in northern Slovakia.

It was my pleasure to attend the seminar and have the opportunity to continue to expand the IMF's relationships with patient organizations throughout the world that share the common goal of supporting and improving life for myeloma patients.

Slav6.jpg

Mr. Hrianka Miroslav, a representative of SMS, moderated the seminar and did a fantastic job organizing a highly informative and enjoyable meeting. The seminar, which welcomed 130 patients, family members, and physicians from different cities across Slovakia, was a great success.

Slav5.jpg

The seminar began with a patient forum, which included an uplifting testimony from a Slovak myeloma patient who focused on the idea that "every day is a new beginning." This presentation was quite moving and was followed by presentations on activities of several myeloma patient associations in Central Europe. These included presentations from:

  • Ms. Alice Onderkova from CMG (Czech Myeloma Group) - Czech Republic
  • Ms. Kinga Kocemba from Carita - Poland
  • Ms. Margareta Bartosova & Mr. Hrianka Miroslav from SMS (Slovak Myeloma Society & Patient Club)

The second day of the Patient & Family Seminar began with my presentation. I shared an overview of the IMF, our mission, goals, achievements, and the IMF's international initiative: the Global Myeloma Alliance (GMA). Mr. Hrianka Miroslav, meeting organizer, is representing Slovakia in the GMA.

During my presentation, the IMF's message was well received and understood by the Slovak patients. I enjoyed sharing information about the resources and support the IMF provides to patients worldwide.

Slav4.jpg

Following my presentation, Dr. Roman Hajek of the Czech Republic shared information about new myeloma drugs, treatment side effects, and clinical trials. He also provided personal consultations for patients. The participants paid great attention to this crucial presentation.

One of the things I will take away from this seminar is an appreciation for the remarkable relationship between the Czech and Slovak people. These two countries used to be one, Czechoslovakia, until a political split happened smoothly in 1993. This peaceful divorce is still called the "Velvet Revolution." However, as independent as the countries are now, Czech and Slovak people have an excellent relationship and strongly support each other, which I have seen in their fight against myeloma. I could see this relationship in the very well received presentations from Dr. Hajek and the Czech Myeloma Group. It is an inspirational relationship that should be taken as a great example all over the world.

Slav3.jpg

Back to the seminar! Day two also featured the following interesting presentations: "Integrative Myeloma Treatment & Logotherapy" from Dr. Pavel Kotoucek of Homerton University Hospital in London; "Physiotherapy and Spa Treatment" from Dr. Eva Kmetyova of University Hospital in Bratislava; "From Diagnosis to Ambulatory Monitoring of the Disease" from Dr. Zdenka Stefanikova of University Hospital in Bratislava; and "the Art of Healthy Living, Separate Diet" from Prof. Katarina Horakova, DrSc, of Slovak Technical University in Bratislava.

I am very grateful to Mr. Hrianka Miroslav--who is a caregiver to his very brave wife Milada, who has been fighting myeloma for nine years--for organizing such an informative and enjoyable meeting. I am looking forward to attending the 2015 Slovak Patient & Family Seminar!

Nadia Elkebir
IMF Director of Europe and the Middle East

1 Comment

Is it possible to get a copy of "the Art of Healthy Living, Separate Diet" from Prof. Katarina Horakova, DrSc, of Slovak Technical University in Bratislava?

Leave a comment

A Patient Reports on Her Experience Serving on the IRB Board

| No Comments

"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

Leave a comment

DurieBlog_ChemoCost.jpg

This past weekend, "60 Minutes" focused on the high cost of cancer drugs. Although the discussion centered on treatments for colon cancer and chronic myelogenous leukemia, it is an across-the-board problem. Lesley Stahl interviewed experts at Memorial Sloan Kettering Cancer Center about the very high cost--$11,000 a month--for a new drug, Zaltrap, to treat colon cancer, versus $5,000 a month for a very similar drug, Avastin. The prolonged survival benefit of 1.4 months did not seem to justify the doubled cost. After a New York Times op-ed that made this point was published, Sanofi, the manufacturer of Zaltrap, immediately agreed to cut the cost in half! This rapid reaction prompted a chain of other reactions revealing the complexities involved in determining current cancer drug pricing.

The basic problem is that many new cancer drugs cost approximately $100,000 a year, and patients may need to take more than one at a time. Few patients can pay such costs directly. This is where the complexity starts. Prices, drug manufacturers argue, are linked to development costs that often amount to several $100 million to as much as $1 billion.

Dr. Hagop Kantarjian from MD Anderson Cancer Center in Houston takes issue with this argument. He examined the costs for the spectacularly successful drug Gleevec, to treat and control chronic myelogenous leukemia with indefinite, continuous use. The cost for Gleevec in 2001 was $28,000 a year. The development costs were recouped within the next decade. The Novartis Corporation has now earned a total of approximately $45 billion from Gleevec alone. The problem is that the cost of Gleevec is now $92,000 a year. What justifies that increasing cost over time? And what justifies the fact that patients in the US routinely pay 40-80% more for their drugs than do their European, Canadian and Australian counterparts?

The major justification offered by a representative of the pharmaceutical trade group on "60 Minutes" is that continued expensive research and innovation are required to develop new and better drugs. Who should pay for that innovation? Certainly not desperate cancer patients who are struggling to pay for lifesaving therapies.

After watching the interviews on "60 Minutes" I concluded that a financial structure that allows pharmaceutical firms to recoup the original investment and rewards them for their risk is fine. The system, however, must price those lifesaving drugs in a way that respects the needs of patients. I believe that the funding of additional and new innovation should be the focal point of a separate dialogue: How can we reduce drug costs and also make drugs available in a more realistic fashion in the global marketplace?

An honest dialogue would require all parties to come to the table - patients, manufacturers, legislators, government entities such as Medicare (which currently, by law, must pay full price for drugs), large hospitals and clinic groups (which negotiate discounts), insurers, and physician care providers (who are largely caught in the middle of complex buying arrangements). This must not be a blame game. Faced with an explosion in cancer drug costs, I believe there is enough momentum to find equitable solutions.

Any ideas for solving this problem will be most welcome and, perhaps, can initiate the necessary dialogue. A starting point for the conversation on behalf of myeloma patients might be our next International Working Group (IMWG) Summit, where we can invite all concerned parties to address this issue. 

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

29 Comments

Currently all of the costs of Cancer drugs are being borne by the patients and thier insurance providers. In the case of MM, the population of patients needing the new Noval agents is relatively small percentage of the total poplulation as a whoe.

Thus the cost needs to be spread out to a larger base. This can be done by adding a "research charge" to all drugs including over the counter non-perscription drugs. Thus the cost of a cancer drug like Revlimid would be spread out. The results would be a small increase in the price of all drugs but a big reduction in the price of cancer drugs bone soley by the patients and their insurance carriers. How that research charge then gets allocated back to each drug manufacturer I will leave to someone else. However, it would be some form of allocation based on cost.

Dear Dr. Durie,
I'm one of those patients who is finding out that the annual out of pocket cost of my chemotherapy drug, Revlimid, will be approximately $8,600 in 2015. I was recently notified by my former employer, JP Morgan Chase, that they are eliminating group medical/drug/dental plans for medicare eligible retirees. They've hired a consultant, Towers Watson, to help us find individual medicare supplemental, drug part D and dental plans. Recently JP Morgan and Towers Watson held information sessions for retirees in which they told us that the individual coverage we would get would be, in most cases would be better and less expensive than what we had under the group plans. What a joke!! I've been told by Towers Watson that under the least expensive drug plan my annual out of pocket cost for Revlimid would be $8,600. This is a 615% increase over my cost of $1,200 in 2014!!! What can a retiree on social security do about this? Medicare should cover oral chemo drugs as they do intravenous drugs. This would really relieve seniors of the fear they won't be able to continue their oral chemo regimens. I don’t know what to do. Please help me. Thank you for your consideration.
Pamela Shiells

Do U.S. pharmaceuticals make up low prices charged in other countries by high prices charged in U.S.?

Should the IMF advocate lower prices for Medicare patients on the high priced oral medications?

Or, again on that theme, should there be more advocacy for parity for Medicare patients (fed.law)?

The retail price in Medicare law means that even with Part D RX insurance the copay percentage is very high.

Thank you for listening to my questions/comments.

Dr Durie writes, "Prices, drug manufacturers argue, are linked to development costs that often amount to several $100 million to as much as $1 billion." While the claim about development costs is no doubt true, simple arithmetic shows that prices are NOT linked to those costs.

According to the NCI SEER database, there were 83,367 people living with myeloma in the US in 2007. If half of these are on Velcade at $100,000/yr, it generates $4.2 billion for Mellenium in just one year. If half are on Revlimid at a similar price, it generates the same amount for Celgene. That's just one year, and that's just for the US. Drug patents last 20 years in the US. Worldwide, there are probably three times as many myeloma patients in developed countries where they can get treatment with these drugs. Thus, the pricing corresponds to total revenue of perhaps $250 billion for one drug. Even if development cost $1 billion, it is clearly not the thing that drives the price.

For cancers that are more widespread than myeloma, these numbers favor the drug companies even more.

It might be truthfully claimed that for each successfull drug drug companies must also spend development money on many drugs that fail and produce no revenue. However, in most cases difficulties with a potential drug are identified early enough to limit the loss to tens of millions of dollars, not hundreds of millions or a billion. So those costs are also insufficient to explain the high prices.

The truth is that there is no justification for the prices is greed (unless greed counts as a justification). As with any product, the maker wants to earn as much as possible. The only reason that it's possible here is the lack of a free market. The market is distorted by an overly-generous patent system, by foolish laws like Medicare's prohibition on price negotiation, and by our system of third-party payers for health care.

The only solution I can imagine is regulation: governments should determine prices. The drug companies will claim that this stifles innovation, but the numbers above show that strong motivation for new drug development will continue even if the prices were cut by a factor of 10.

Regards,
Larry

I have myeloma cancer there is no way i could pay 10,000 a month for just one of the drugs i must take being a retired city worker the drug companys should give these drugs out for no charge and the goverment should match what they give out with tax write offs to the company, i know with my drugs they dont even give you full remision, one big question i have is what happens to all the donation money collected for cancer does anyone watch where and what this money is spent on. know one should die because they cant afford drugs to keep them alive.

The fact that the manufacturer immediately lowered the cost tells you that there was no reason for the higher cost except for greed. Also, why pay twice as much for a new drug when the old, cheaper drug works just as well?

I agree the cost of drugs to save one's life is very expensive. To further the frustration of trying to survive, when trying to apply for funding assistance, most organizations only consider the annual income of a family and not the expenses. Thus, you're on your own.

The high cost of drugs causes me to wonder who is slipping through the cracks because they can't afford co-pays for life savings drugs. It is certainly understandable that research has to be funded,someone has to pay for the production of drugs and everyone else in between, but there has to be a more equitable solution.

I'm still trying to figure out how and why I was diagnosed with Multiple Myeloma and what it will take to be cured and if I can afford it.

The drug companies should have to prove their development costs to set the recouping time to determine a fair cost for their drug. Huge win falls for the companies should be government regulated. To pad the pockets of big corporations, CEO's and stockholders on the back of cancer patients who are already fighting physical and financial battles is unconscionable.

Dr. Durie,
My comment is only somewhat related to this issue. I need to start another regimen, after my Revlimid pooped out recently. I cannot understand why , to use a newer medicine, I have to have failed Velcade or any other drug as well. Once a new drug is proven safe, that's it - it's not half safe. The rarionalizations re safety and liability trouble me.Iit seems this is a ploy by the drug manufacturers to make sure they get the most play from the older drugs possible.

We are rally happy to see you address this problem. it is not only a big the patient, but the insurance companies.

To even quote Dr. Kantarjian in any way is insulting to we cancer patients/

He and his ilk believe in QALY, comparative effectiveness and/or complete lives theories which deny needed care to patients through a perverse view of value.

They rely on averages to determine how care will be given. Under their American version of health care 9akin to the UK system which is imploding as we speak) i would have been denied care for my mutliple myeloma in 2009 as the expected averages didn't justify it.

If you practice medicine based on averages, you will satisfice and only achieve results for the patient that are average, leaving little room for people like me who lost the genetic lottery to roll the dice and beat the odds.

Our goals should be to increase the average life expectancy of cancer patients through medical innovation and novel therapies, not merely to meet the existing average.

The patient sets the goals in care and value is derived by doctors and the health industry meeting those goals.

Doctors like Dr. Kantarjian do not place any value on living "only" a few months - but patients can and do.

Bob Tufts

If the government is funding the research, it should have a say in the process of pricing the drugs. Also, there are many intelligent and creative people outside the US very well qualified to do the research but who work for one tenth or one hundredth of the salaries that are paid to researchers here and they should be employed in heir country of origin to do the research in drug development. This approach is currently used by giant US corporations like, GE, Google, IT industry, major engineering corporations like Bechtel, etc to name a few to cut down the research and development costs and hence reduce the drug costs to patients. I myself being one of them.

Regards
Mohammed Siddiqui

I have lived 5+ years not average. After a multiple myeloma diagnosis thanks to a pill based regimen that was a result of "small" changes.

Systems like those in the UK that rely on cost to supply care (QALY) would have denied me access to life saving care and probably taken my life in 2009.

When we examine cost alone we end up with one size fits all medicine that treats patients as "average". In my case this average would have meant death.

We cancer patients are not average.

The goal should be to raise the "average" survival rate (which has been done in cancer) not to satisfied and keep the same average.

ARE YOU AWARE OF THIS???????
Last night 60 Minutes did a piece on the high cost of cancer drugs and how it was destroying middle-class families and one of the greatest reasons for personal bankruptcies. If you really want to report the real crime is that these drugs are provided for absolutely no cost whatsoever to illegal aliens. They can walk into my wife’s hospital, a major cancer institute here in Atlanta and everything is covered from the diagnosis, all testing, cat-scans, cancer drugs, all Chemo treatments, all office visits……..Absolutely everything is covered by the government at no cost while our citizens have to virtually wipeout their entire life-savings and in many cases file for personal bankrupty. This is the real crime……… It would be nice if you discuss this in meetings.

Yes yes yes the cost of many cancer drugs is extremely high BUT there is so much assistance out there no one should ever have to skip or not continue to take their life saving drugs. LLS ,state run help and even the drug companies themselves will and do help. Example when I found myself without insurance and needing to take Revlimid for MM and thanks to assistance never had to pay more then a 60.00 copayment which the LLS picked up. So please let people know .

Leave a comment

DurieBlog_SavePlanet.png

In recent weeks, you may have seen full-page newspaper ads signed by 160 award-winning scientists from around the world pleading for funding to help save the planet in the face of climate change. This week, the United Nations convened what the New York Times called "the largest gathering of world leaders ever devoted to climate change."  The need is clear, but momentum  to take action has been strangely lacking.

Toxic chemicals not only affect our planet, they affect the humans who inhabit it. On September 10, the IMF held a congressional briefing in Washington DC that presented information about the link between chemicals at the 9/11 sites and cancer. There are clear links between exposure to certain environmental toxins and myeloma, but the cause of myeloma has typically been listed as unknown. There is no momentum to investigate further or try to prevent myeloma.

We have knowledge about environmental toxins that could help make myeloma a preventable disease; there is a long list of chemicals that cause cancer, and there are thousands more--equally or more toxic--in widespread use that have never been tested to see if they cause cancer.

Where is the motivation to use energy and chemicals wisely, and to begin de-contaminating our planet and its people?

Ever so slowly, the tide is beginning to turn. The Rockefeller Brothers Fund announced this week it will sell assets in fossil fuel companies and invest in cleaner alternatives.  Germany is building massive wind farms off shore to make a meaningful contribution to cleaner energy generation. The European Commission now requires toxicology testing for all new chemicals, and older chemicals are under much tighter review. Reduced use of chemicals is now on the agenda.  And innovative, environmentally sensitive companies such as Pylantis are working to replace petrochemical plastics with non-toxic, recyclable and compost-ready alternatives. Even China has announced a multi-billion-yen program to reduce and shift away from pollution.

study published recently in the journal Nature illustrates the need to eliminate toxic chemicals, not just in the environment, but in our diets as well. According to NPR, the study suggests that for some people, diet sodas may alter "gut microbes in a way that increases the risk of metabolic diseases such as Type 2 diabetes." The change in gastrointestinal microbes leading to diabetes and obesity is also linked to myeloma and other cancers (breast cancer and certain pediatric cancers), again demonstrating that there is a multi-system, multi-step disease causation process. In the case of diet soda, it is potentially a reversible process.

Reversing our exposure to toxic chemicals requires recognition of their effects: agricultural run-off leaks into rivers, lakes, and oceans, and then into fish and into food, causing DNA damage and reducing the strength of the immune system. Inflammation triggers the growth of damaged plasma cells in the case of myeloma, or of other cells, causing other types of cancer.

Cancer prevention requires a multifaceted approach that focuses on eliminating ALL toxic chemicals. Safe chemicals, real food, clean water, and clean energy are critical elements for insuring our good health.  

Is it too late? Let's hope not! We really need our planet--one on which myeloma is decreasing, not increasing.

I invite members of the myeloma community who have an interest in raising awareness about pollution and toxic chemicals to think about what might be done to change the momentum and get rid of the lethargy! I welcome your thoughts!

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

6 Comments

One way that we might reduce our exposure to toxins born of our technologically advanced society, is to have voluntary "Low Tech Days" wherein we could participate as we are able to do so, in reduced use of all products that make our lives more convenient but much more isolating and toxic.

I was diagnosed with Stage III-b Multiple Myeloma, type lambda, with 90% marrow plasma cells in March of 1993. I took part in a conference in Hamilton, Ontario, in 2002 in Hamilton, Ontario, Canada that dealt with the pervasive use of synthetic organic compounds since WWII for cosmetic and agricultural use as weed killers, and as industrial degreasers, particularly in the then-burgeoning automobile industry. The point was made very strongly that this class of chemicals is NOT water-soluble, but is instead fat-soluble. The meaning of this is that human exposures are not excretable, with the exception of lactating mothers, who thus provide a lifetime of exposure to their infants; they accumulate in the human body (and in the bodies of grazing animals, for example, which are then eaten by humans, increasing the accumulation) making the concept of 'maximum allowable exposure' meaningless. Yet our government health agencies continue to establish these 'maximum exposure' standards. This is an area of public policy that must be addressed by our societies by educating the public and of course, the legislators and public-policy makers. I would expect that those who have a financial interest in the continued use of fat-soluble chemicals will strongly oppose putting restrictions on or eliminating the use of these pollutants, but the people must ensure that their representatives in government are not influenced by the corporate interests.

As a New Yorker, we recently had a first responder fire fighter come to our MM support group. He now is in search of a donor match for an allo transplant. The suffering he has endured is awful. Who would have thought his good deed of helping with the 9-11 cleanup would result in his exposure to toxic chemicals, leading to his diagnosis of MM.

Today, 9-25-14, three firefighters, also first responders passed away due to Cancer, yes, three in one day. Could not agree with your article more....where are we headed without serious change?

Here is a long standing resource about chemicals' impact on our lives.

http://healnatl.org/

Thank you for this fine article. I live in a town called Forest Knolls where the Bay Area Air Quality Board (SF area) states that our little town has the worst pollution due to wood burning stoves. Even though this has been declared, it is an uphill battle to get people to change their burning habits to something more clean. Some people even have stated that they like the smell or it makes them cozy. I spent 45 yrs. running, biking, etc. in our community only to realize that this may have caused my MM. Thank God that we have a small group that are involved in trying to make change. Probably won't be in my lifetime.

In our private lives, toxic chemical for cleaning are inexcusable, as well as applying toxins to your yard to make it a golf "paradise." Why not try white vinegar as a purifier? Baking soda has its uses.

Leave a comment

  • Report From November 2014 Patient & Family Seminars in Norway and Denmark
  • Transplant at Relapse: Is It Valuable?
  • Surprise rejection of panobinostat for approval by 5-2 margin at ODAC Hearing
  • Diagnosing Myeloma Early: New IMWG Guidelines
  • Are We Starting to Cure Myeloma?
  • The IMF Co-Hosts Patient & Family Seminar in Slovakia
  • A Patient Reports on Her Experience Serving on the IRB Board
  • Cancer Drug Costs: Is the System Broken?
  • Saving the Planet--and Preventing Myeloma

  • To subscribe to this blog, enter your email address below:

    IMF Twitter Updates

      Follow the IMF on Twitter