continued

Interviews with the ExpertsThe Pathologist’s Role in an MDS Diagnosis

the ConnectionMDS

Fighting Bone Marrow Failure Diseases Through Patient Support and Research Since 1983 www.AAMDS.org

Zeba N. Singh, M.B.B.SUniversity of Maryland Medical Center Zeba N. Singh, M.B.B.S. is assistant professor of pathology in the Division of Hematopathology, at the University of Maryland Medical Center in Baltimore, Maryland. She is Board-certifi ed in anatomic pathology, hematopathology, and molecular genetic pathology. With more than 15 years of

hematopathology experience, she has been practicing hematopathology in the United States since 2007. Before coming to the United States, she was a practicing hematopathologist in premier academic institutions in New Delhi, India. Her particular areas of interest are myelodysplastic syndromes, acute leukemia, myeloproliferative/myelodysplastic syndromes and other bone marrow failure syndromes, and molecular hematopathology.

Can you explain in general terms what pathologists do and what their specifi c roles are in an MDS diagnosis?

The pathologist is involved at every stage in the diagnosis and subsequent follow up of a patient being treated for MDS. Often, when the patient is detected to have low blood counts on a CBC, by evaluating a peripheral blood smear, the pathologist alerts the clinician that there may be underlying MDS and the patient should be investigated further in this direction. The pathologist is the one who examines the bone marrow specimen, confi rms the diagnosis of MDS, and looks for the morphological features that are required to generate the prognostic score of high-risk or low-risk disease necessary for management decisions. Since the bone marrow sample is sent to the laboratory, often the pathologist is there to triage the specimen and see that it is sent to the cytogenetic lab, and for appropriate molecular testing to make sure all the necessary tests are conducted.

Important Information for People Living with Myelodysplastic SyndromesVOLUME 3, NUMBER 6, NOVEMBER 2013

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Connect online with other MDS patients

What should the two-way interaction be between an MDS patient’s treating physician and the pathologist?

Communication between the pathologist and clinician is very important in the diagnosis of MDS. A report by the pathologist of dyspoietic or abnormal morphological appearance of the blood cells on the peripheral blood smear of a patient with low blood counts may often initiate the further evaluation of MDS by the clinician. However, neither low counts nor dyspoiesis are specifi c only to MDS, and several other clinical conditions may mimic MDS morphologically. Dyspoiesis in peripheral blood or bone marrow is not enough to make an MDS diagnosis. Talking to the clinician to fi nd out the details of the patient history, results of other lab tests that may have been ordered, and other medical issues that may be aff ecting the patient are important for the correct interpretation of dyspoiesis, and to make a diagnosis of MDS. Sometimes, the pathologist has to ask the clinician to order additional tests before a diagnosis can be rendered. An ongoing communication is needed to make this happen.There are situations when a defi nite categorization of MDS may not be possible, or there are co-morbid conditions confounding the interpretation. In these circumstances in particular, a discussion between the clinician and pathologist is necessary to resolve the concerns. In academic centers like ours, all newly diagnosed patients are discussed in a team setting at an MDS or leukemia meeting, attended by the treating physician, oncologist, hematopathologists, radiologists, and other specialty physicians as necessary, so it is defi nitely a team-based approach.

Building on the successes and strong attendance at the 2013 Regional Patient and Family Conferences, AA&MDSIF announces its conference series for 2014, to occur in six metropolitan areas. Registration for all six locations will be available on or about January 1, 2014.

2014 Patient and Family Conferences are Announced

If you weren’t able to attend one of our 2013 conferences, be sure to sign up for 2014.

*Tentative schedule. Dates and locations subject to change.

If you’re interested in seeing what the MDS research community is doing, visit www.AAMDS.org/Research.

� ere you’ll � nd a selection of links to article abstracts of published MDS research from many international journals. � ese can be on general to highly specialized topics and are sometimes authored or co-authored by AA&MDSIF Medical Advisory Board members.

Selected articles have been summarized in plain language writing, making highly scienti� c and medical facts and data understandable for the lay reader.

You’ll also meet some of the brightest minds in MDS research – the AA&MDSIF research grant recipients. Read about their projects and progress and their own thoughts on what their work is contributing to the broader � eld of MDS research.

Read about the latest MDS research from dedicated researchers

Los Angeles APRIL 5

Philadelphia MAY 17

Louisville JULY 26

Detroit SEPTEMBER 20

New Orleans OCTOBER 11

Miami NOVEMBER 8

Search for published research by topics, authors, and journals at www.AAMDS.org/Research

Fighting Bone MarrowFailure Diseases Through Patient Support andResearch Since 1983www.AAMDS.org

100 Park Ave., Suite 108

Rockville, MD 20850

FREE PHONE SUPPORT FOR MDS PATIENTS, FAMILIES, AND CAREGIVERSDo you need to speak with someone directly

about myelodysplastic syndromes (MDS)?

Please contact our Patient Educator at (800) 747-2820 option 1, or by email at info@aamds.org. Our Patient Educator communicates with people all over the world, answering a wide range of questions about MDS, including information on treatment options, clinical trials, fi nancial resources, and more.

PEER SUPPORT NETWORKLet this AA&MDSIF resource help you!

The Peer Support Network is a national network of trained volunteers, including patients, caregivers, and family members, who offer information, personal experience, coping strategies, problem solving skills, and informational resources to people just like themselves. Speaking with a Peer Support Network volunteer is a great way to gather information and receive emotional support from someone whose life has also been affected by bone marrow failure disease.

To connect with a Peer Support Network volunteer, call (800) 747-2820 option 1, and speak with our Patient Educator, who will match you with one of our volunteers. You can also email her at info@aamds.org.

Help is Here for MDS Patients

NO INTERNET ACCESS AT HOME? Internet-connected computers are found in many locations, including: • Retirement homes • Apartment community rooms • Public libraries • Senior centers And it’s almost certain you know someone (relatives, neighbors, friends) who is connected!

Connect with us at www.AAMDS.org!

Contact Us

help@aamds.org (301) 279-7202 or (800) 747-2820

• Educational materials Read Your Guide to Understanding MDS, a free patient guide that explains in plain language what you need to know to understand MDS—why it happens, what to do about it, how to receive your best care—and tips for living well with MDS.

Also available are What to Expect from Treatment: A Guide to Understanding FDA-Approved Drug Therapies for Myelodysplastic Syndromes (MDS) and Standing Up for Your Health: Self-Advocacy forPatients with Bone Marrow Failure Diseases.

• Print and electronic news Stay current with the latest information on areas relevant to MDS through our other newsletters: Insider (print) and eInsider (electronic).

• Patient connectionsConnect in person at a regional Community of Hope event (for more information, please contact crews@aamds.org).

• Make an online dedication Dedicate a day in honor or memory of a loved one or to celebrate your own life, on our 2013 Calendar of Hope, www.AAMDS.org/Dedication.

www.AAMDS.org – Your best resource for medical and personal perspectives on myelodysplastic syndromes (MDS)

Aplastic Anemia & MDS International Foundation

Important information for people living with myelodysplastic syndromes

the ConnectionMDS

Discover the ‘What is MDS?’ iPad appUsing this iPad app, patients and their families can learn about MDS in several ways:

• Watch the What is MDS? video that provides a basic animated description of the disease.

• Read, listen to, or view the Frequently Asked Questions about MDS.

• Read the extensive disease-related content within the app, including information on why MDS results in low blood counts and the associated symptoms. Information about risk levels, treatments, managing side e� ects, staying on treatment, and preparing for o� ce visits is also provided.

� e ‘What is MDS?’ iPad app can be downloaded from www.apple.com/itunes

Learn more about the iPad app and watch the What Is MDS? video at www.AAMDS.org/MDSapp

VOLUME 3, NUMBER 6, NOVEMBER 2013 • APLASTIC ANEMIA & MDS INTERNATIONAL FOUNDATIONSupported by an unrestricted education grant from Celgene Corporation.

The Pathologist’s Role in an MDS Diagnosis continued from cover

the ConnectionMDS

From a pathologist’s perspective, what factors complicate an MDS diagnosis?

One of the complicating issues is simply not having the right tools, which include the appropriate specimen and the necessary clinical information about the patient. It may be that a CBC is not provided, or there is no concurrent peripheral blood smear with the bone marrow, or that the specimen is inadequate–and this can happen frequently. The technique of obtaining the bone marrow specimen is very important. Common problems are the biopsy being too small or fragmented or it includes cartilage and bone rather than marrow. Or the aspirated bone marrow material may be diluted with peripheral blood, or the smears not prepared properly even if the material is adequate resulting in crushing of the cells. Finally, a perfect specimen may be diffi cult or impossible to interpret if the staining is not optimal. These pre-analytic issues are the most important ones that can create a problem. Fortunately, these are problems that can be resolved by attention to detail and by training. Then there are issues inherent to the disease. MDS is a diverse disease in terms of morphology with many reactive mimics. Although most often the bone marrow is hypercelluar, in about 5 to 10 percent of patients, it may be hypocellular when a distinction from aplastic anemia is very diffi cult. The dysplastic changes can be very subtle, and more often than not, in a hypocellular setting, when a diagnosis of MDS is dependent on cytogenetics, an adequate specimen for cytogenetic evaluation cannot be obtained. There are situations where the MDS may be associated with fi brosis, and distinction from myelofi brosis or a myeloproliferative/myelodysplastic overlap disease is very diffi cult. Similar to a hypocellular marrow, marrow aspirate material can often not be obtained from fi brotic marrows. There are situations when there is an associated hemolysis, or the bone marrow is obtained after repeated transfusions, which can alter the morphology and confound the interpretation. And I must mention there are inherited bone marrow failure syndromes that may present for the fi rst time at an older age. These bone marrow failure syndromes may not only mimic MDS, but they often predispose to MDS. The distinction is important for management and requires specifi c tools for diagnosis and involvement of geneticists and other specialty physicians.

How involved are pathologists in the diagnostic process in determining an MDS classifi cation or subtype?

I would say very involved, since the diagnosis is made and confi rmed by the pathologist. The blast percentage–important for prognosis–is also determined by the pathologist, so the

pathologist is very involved in the diagnosis, classifi cation, and generation of the IPSS or other risk score necessary for outlining the treatment strategy for the patient. The involvement does not end with a diagnosis. The pathologist is involved in the follow up–in assessing response to treatment or evolution of the disease.

Should patients be asking their doctor about what happens ‘behind the scenes’ in the pathology lab?

They should be curious to know what happens to the specimen obtained from their body. I think it is important for them to know the processes involved in arriving at a diagnosis. Patients should know about the procedure and ask what the tests are for; and if the specimen is submitted, if cytogenetics will be performed. They need to understand that many quality control measures are required to ensure the pathologist gets the right materials. MDS is often a diffi cult diagnosis, and many patients move from one institution to another before they fi nd a doctor they are most comfortable with. In most cases, a bone marrow procedure is performed at each institution. So there may be several reports with diff erent wording and interpretations, and since the disease may evolve with time, to get a complete picture, as a hematopathologist, I would like to evaluate all the previous materials.For continuity of care, it is important to have copies of all their reports. Generally, the patient does not directly contact the pathologist for questions regarding the report. The treating physician is the better person to answer their questions and they should be the fi rst contact, but the patient should know who the hematopathologist is, and if they can contact them if they wish to.

What is most important for patients to know and remember about the pathologist’s involvement in arriving at an MDS diagnosis?

Most patients do not know there is another physician involved in making the diagnosis, other than the one they see at appointments who reads out the report to them. They should understand that the diagnosis and management of MDS is a team approach. Also, if I were the patient, I would want to know if the physician reading their slides has a specialty certifi cation.

How important is it for patients to have a pathologist who sees a signifi cant number of cases of MDS and knows what to communicate to the treating physician?

It is essential. Hematopathology is a very specialized fi eld. Just as a breast or prostate biopsy is best examined by a person who has special training in these fi elds, has seen many of these biopsies, and knows what to look for, a bone marrow biopsy is best examined by a pathologist with special training in the fi eld, and preferably with many years of experience. Having worked in academic institutions that receive many consult cases, I have seen instances of both over-diagnosis and under-diagnosis of MDS.

Interviews with the Experts The Patient Perspective Jim Westmoreland’s Pathto a Clinical Trial

James Westmoreland, age 78, of Cookeville, Tennessee, is a retired Associate Vice President for Information Technology Services from Tennessee Technological University. Here, he recounts his story of his participation in a clinical trial at the MD Anderson Cancer Center in Houston, Texas.

How did you fi rst learn about a clinical trial?

Finding out I had a problem happened in an interesting way. I belong to a Kiwanis club and had donated blood off and on, but not on a regular basis. In January 2008, a fellow Kiwanian announced that the Bloodmobile was at the YMCA so I decided to go and donate. They found I was anemic and thus I was unable to donate blood. All my routine medical tests done in October 2007 had been normal. I went to my doctor and blood tests were done–with abnormalities found,

so he wanted me to have more tests completed at Cookeville Regional Medical Center (CRMC) hospital lab. I went there and more tests were made, all having similar results, so I was next referred to the CRMC cancer center. My red and white blood cell counts were low, and my platelet count was found to be very low. They decided to do a bone marrow biopsy right away. A few weeks later, I received the diagnosis of myelodysplastic syndrome (MDS). This all started just by deciding to go to the blood drive a month earlier! In February 2008, I began receiving azacitidine (Vidaza®) on a seven-day treatment schedule that had harsh side eff ects, so it was cut back to a fi ve-day cycle. From that point, over the next two years, I had 25 weeks of this treatment. I also tried decitabine (Dacogen®) and lenalidomide (Revlimid®) which didn’t work as well, so I ended up going back to azacitidine. During this time, I had 92 blood transfusions. I had planned an out of town trip here in Tennessee and my doctor said I should not go. Having travel limitations posed a problem because I had been elected to a Kiwanis position that required travel to surrounding states and attend conventions in them. I had one thing going in my favor–I was otherwise healthy. I’m a retired Marine and stayed in fairly good shape over the decades since. I wanted to know what I had to do to be able to travel. We timed the transfusions to occur so that my blood counts would be optimal for traveling. In December 2009, my doctor in Cookeville referred me to the Sara Cannon Cancer Center in Nashville to discuss the possibility of a stem cell transplant. It’s true than some treatment centers will not consider a stem cell transplant for someone my age. If I had a matched relative donor, they would have done the transplant. But because I was adopted, I have no knowledge of my actual family background. My three children were tested but were not a match. So a stem cell transplant using one of my children as donors was not an option at the center in Nashville, because they did not do matched unrelated stem cell transplants. However, the doctor at Sara Cannon Cancer Center had come from MD Anderson to work at the center. He thought MD Anderson would be willing to try a matched unrelated stem cell transplant and was willing to make the connection for me.

How did you arrive at deciding to take part in a clinical trial?

We went to MD Anderson in Houston in April 2010, and went through all the testing over a week or more and I was accepted into the stem cell transplant program. They had found two matched unrelated donors for me, but at that point, we did not know if these two people were still available or willing to donate. At this time, they asked if I would consider being part of Phase 1 of a clinical trial as an alternative. It did not take a lot of discussion with my wife for us to agree to participate in the trial study, knowing the diffi culty that could be experienced with the transplant option, especially at my age.

What were the steps you had to take to apply, be evaluated, and accepted into the trial?

At MD Anderson, once I opted to be considered for the clinical trial, they had me go down the hall to see one of the doctors involved with the trial study. They already had my lab information so some of the evaluation process was already complete. This was more of an interview for the study leaders to decide if I was right for inclusion in the trial. I was accepted, and it was made clear that the stem cell transplant would still be an option for the next six months –this was a good fallback option. This is a Phase 1 study during which patients with low or intermediate-1 risk MDS will receive an investigational study drug, ARRY-614.They wanted to start me right away, but didn’t realize I had to take care of things at home fi rst before I could come to MD Anderson for an extended stay. We returned home and made the arrangements we needed and went right back to Houston. On May 4, 2010, I took the fi rst dosage as part of the study and also received a blood transfusion. For the study, I was taking 1200 mg daily by mouth (in capsule form) of ARRY-614. After the fi rst fi ve days, I broke out in a rash! I had an appointment the next day and they decided to take me off the drug until my reaction had cleared up.As it turned out, an AA&MDSIF Patient and Family Conference was taking place in Houston soon after I started my stay at MD Anderson, so we decided to attend and it was time well spent! We met other MDS patients and met some of the presenters. By this time, my rash had cleared up. I saw one of the members of the clinical trial team who was speaking at the conference and he thought it was the dosage amount that had caused the rash. It was cut back to 900 mg, and I have been on that dose for over three years which is longer than any other MD Anderson patient who is on this trial study medication.

To what extent has the clinical trial affected your daily life?

Related to the trial itself, the follow up visits were fi rst, every four weeks, then it was extended to every eight weeks, and now it’s every 12 weeks. So these return trips to MD Anderson have become part of my routine. My blood draws were done locally once a week–now they are every two weeks. I see my local hematologist/oncologist at CRMC cancer center every four weeks. So the routine work and evaluations are done locally and the results are communicated back to MD Anderson. I have not had another transfusion since the one given the day I started with my fi rst treatment. My blood counts are now in the normal range, but barely so. They’re just at the line between normal and low. The platelet counts took the longest to come up to an acceptable level. As far as the rest of my activity–we still travel, I mow four acres, and I’m still active in Kiwanis. So this must mean my daily life has not been greatly aff ected!

What is your advice to patients who are considering or being advised to consider clinical trials as a treatment option?

From my experience, it was taking a chance, but many things in life can be like that. We didn’t know if it would help me unless I tried it. Plus, having a basis for comparison helps. The original treatment before the trial hadn’t helped me much, although I wasn’t getting any worse. I was just holding the line. But still the counts that I had then were far from normal. So I wanted something that might be better, knowing that a stem cell transplant was a fallback option. And the decision was easier to make when I realized that even if my treatment in this trial was not successful, I would still be making a small contribution to what is known about this experimental drug and for those it may be able to help. It could eventually help many people!

Would you participate in a clinical trial again?

Based on my experience in this trial, I certainly would. I still feel that even if the medicine had not worked as well for me as it has, it would still have been worth trying, for the researchers need to learn as much as possible so they can develop drugs that help many patients in the coming years.We feel so blessed to have benefi tted from this experience. We would like to thank all of those who have been a part of this experience; without them, I would not be where I am today.

Are you enjoying and learning from ? Help us improve The MDS Connection by sharing your opinions with us! Take our online survey at www.surveymonkey.com/s/MDSConnection

If you don’t have a computer, just call us at (800) 747-2820, option 1, and we’ll make sure your opinions are entered into the survey.

the ConnectionMDS

AA&MDSIF MDS Research Review | 2013This new publication includes over 20 easy-to-read summaries of abstracts presented at the major hematology/oncology scientifi c meetings in the past year, and contains some of the most up-to-date information on recent MDS research.

This publication can be downloaded at www.AAMDS.org/MDS2013update. You can request a print copy by contacting orders@aamds.org or by calling (201) 279-7202 x 116.

The Power and Promise of Partnership As a loyal supporter of the Aplastic Anemia & MDS International Foundation, you know the power and promise of partnership. You play an important role in our work on behalf of patients and families living with MDS. Thanks to your generous support, all of our programs and services for patients and their families are free of charge.

Please give your Gift of Hope this holiday season. You can count on AA&MDSIF to continue to provide answers, support, and hope…that’s our promise to you! Make your year-end gift today at www.aamds.org/YearEnd2013.

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VOLUME 3, NUMBER 6, NOVEMBER 2013 • APLASTIC ANEMIA & MDS INTERNATIONAL FOUNDATIONSupported by an unrestricted education grant from Celgene Corporation.

The Pathologist’s Role in an MDS Diagnosis continued from cover

the ConnectionMDS

From a pathologist’s perspective, what factors complicate an MDS diagnosis?

One of the complicating issues is simply not having the right tools, which include the appropriate specimen and the necessary clinical information about the patient. It may be that a CBC is not provided, or there is no concurrent peripheral blood smear with the bone marrow, or that the specimen is inadequate–and this can happen frequently. The technique of obtaining the bone marrow specimen is very important. Common problems are the biopsy being too small or fragmented or it includes cartilage and bone rather than marrow. Or the aspirated bone marrow material may be diluted with peripheral blood, or the smears not prepared properly even if the material is adequate resulting in crushing of the cells. Finally, a perfect specimen may be diffi cult or impossible to interpret if the staining is not optimal. These pre-analytic issues are the most important ones that can create a problem. Fortunately, these are problems that can be resolved by attention to detail and by training. Then there are issues inherent to the disease. MDS is a diverse disease in terms of morphology with many reactive mimics. Although most often the bone marrow is hypercelluar, in about 5 to 10 percent of patients, it may be hypocellular when a distinction from aplastic anemia is very diffi cult. The dysplastic changes can be very subtle, and more often than not, in a hypocellular setting, when a diagnosis of MDS is dependent on cytogenetics, an adequate specimen for cytogenetic evaluation cannot be obtained. There are situations where the MDS may be associated with fi brosis, and distinction from myelofi brosis or a myeloproliferative/myelodysplastic overlap disease is very diffi cult. Similar to a hypocellular marrow, marrow aspirate material can often not be obtained from fi brotic marrows. There are situations when there is an associated hemolysis, or the bone marrow is obtained after repeated transfusions, which can alter the morphology and confound the interpretation. And I must mention there are inherited bone marrow failure syndromes that may present for the fi rst time at an older age. These bone marrow failure syndromes may not only mimic MDS, but they often predispose to MDS. The distinction is important for management and requires specifi c tools for diagnosis and involvement of geneticists and other specialty physicians.

How involved are pathologists in the diagnostic process in determining an MDS classifi cation or subtype?

I would say very involved, since the diagnosis is made and confi rmed by the pathologist. The blast percentage–important for prognosis–is also determined by the pathologist, so the

pathologist is very involved in the diagnosis, classifi cation, and generation of the IPSS or other risk score necessary for outlining the treatment strategy for the patient. The involvement does not end with a diagnosis. The pathologist is involved in the follow up–in assessing response to treatment or evolution of the disease.

Should patients be asking their doctor about what happens ‘behind the scenes’ in the pathology lab?

They should be curious to know what happens to the specimen obtained from their body. I think it is important for them to know the processes involved in arriving at a diagnosis. Patients should know about the procedure and ask what the tests are for; and if the specimen is submitted, if cytogenetics will be performed. They need to understand that many quality control measures are required to ensure the pathologist gets the right materials. MDS is often a diffi cult diagnosis, and many patients move from one institution to another before they fi nd a doctor they are most comfortable with. In most cases, a bone marrow procedure is performed at each institution. So there may be several reports with diff erent wording and interpretations, and since the disease may evolve with time, to get a complete picture, as a hematopathologist, I would like to evaluate all the previous materials.For continuity of care, it is important to have copies of all their reports. Generally, the patient does not directly contact the pathologist for questions regarding the report. The treating physician is the better person to answer their questions and they should be the fi rst contact, but the patient should know who the hematopathologist is, and if they can contact them if they wish to.

What is most important for patients to know and remember about the pathologist’s involvement in arriving at an MDS diagnosis?

Most patients do not know there is another physician involved in making the diagnosis, other than the one they see at appointments who reads out the report to them. They should understand that the diagnosis and management of MDS is a team approach. Also, if I were the patient, I would want to know if the physician reading their slides has a specialty certifi cation.

How important is it for patients to have a pathologist who sees a signifi cant number of cases of MDS and knows what to communicate to the treating physician?

It is essential. Hematopathology is a very specialized fi eld. Just as a breast or prostate biopsy is best examined by a person who has special training in these fi elds, has seen many of these biopsies, and knows what to look for, a bone marrow biopsy is best examined by a pathologist with special training in the fi eld, and preferably with many years of experience. Having worked in academic institutions that receive many consult cases, I have seen instances of both over-diagnosis and under-diagnosis of MDS.

Interviews with the Experts The Patient Perspective Jim Westmoreland’s Pathto a Clinical Trial

James Westmoreland, age 78, of Cookeville, Tennessee, is a retired Associate Vice President for Information Technology Services from Tennessee Technological University. Here, he recounts his story of his participation in a clinical trial at the MD Anderson Cancer Center in Houston, Texas.

How did you fi rst learn about a clinical trial?

Finding out I had a problem happened in an interesting way. I belong to a Kiwanis club and had donated blood off and on, but not on a regular basis. In January 2008, a fellow Kiwanian announced that the Bloodmobile was at the YMCA so I decided to go and donate. They found I was anemic and thus I was unable to donate blood. All my routine medical tests done in October 2007 had been normal. I went to my doctor and blood tests were done–with abnormalities found,

so he wanted me to have more tests completed at Cookeville Regional Medical Center (CRMC) hospital lab. I went there and more tests were made, all having similar results, so I was next referred to the CRMC cancer center. My red and white blood cell counts were low, and my platelet count was found to be very low. They decided to do a bone marrow biopsy right away. A few weeks later, I received the diagnosis of myelodysplastic syndrome (MDS). This all started just by deciding to go to the blood drive a month earlier! In February 2008, I began receiving azacitidine (Vidaza®) on a seven-day treatment schedule that had harsh side eff ects, so it was cut back to a fi ve-day cycle. From that point, over the next two years, I had 25 weeks of this treatment. I also tried decitabine (Dacogen®) and lenalidomide (Revlimid®) which didn’t work as well, so I ended up going back to azacitidine. During this time, I had 92 blood transfusions. I had planned an out of town trip here in Tennessee and my doctor said I should not go. Having travel limitations posed a problem because I had been elected to a Kiwanis position that required travel to surrounding states and attend conventions in them. I had one thing going in my favor–I was otherwise healthy. I’m a retired Marine and stayed in fairly good shape over the decades since. I wanted to know what I had to do to be able to travel. We timed the transfusions to occur so that my blood counts would be optimal for traveling. In December 2009, my doctor in Cookeville referred me to the Sara Cannon Cancer Center in Nashville to discuss the possibility of a stem cell transplant. It’s true than some treatment centers will not consider a stem cell transplant for someone my age. If I had a matched relative donor, they would have done the transplant. But because I was adopted, I have no knowledge of my actual family background. My three children were tested but were not a match. So a stem cell transplant using one of my children as donors was not an option at the center in Nashville, because they did not do matched unrelated stem cell transplants. However, the doctor at Sara Cannon Cancer Center had come from MD Anderson to work at the center. He thought MD Anderson would be willing to try a matched unrelated stem cell transplant and was willing to make the connection for me.

How did you arrive at deciding to take part in a clinical trial?

We went to MD Anderson in Houston in April 2010, and went through all the testing over a week or more and I was accepted into the stem cell transplant program. They had found two matched unrelated donors for me, but at that point, we did not know if these two people were still available or willing to donate. At this time, they asked if I would consider being part of Phase 1 of a clinical trial as an alternative. It did not take a lot of discussion with my wife for us to agree to participate in the trial study, knowing the diffi culty that could be experienced with the transplant option, especially at my age.

What were the steps you had to take to apply, be evaluated, and accepted into the trial?

At MD Anderson, once I opted to be considered for the clinical trial, they had me go down the hall to see one of the doctors involved with the trial study. They already had my lab information so some of the evaluation process was already complete. This was more of an interview for the study leaders to decide if I was right for inclusion in the trial. I was accepted, and it was made clear that the stem cell transplant would still be an option for the next six months –this was a good fallback option. This is a Phase 1 study during which patients with low or intermediate-1 risk MDS will receive an investigational study drug, ARRY-614.They wanted to start me right away, but didn’t realize I had to take care of things at home fi rst before I could come to MD Anderson for an extended stay. We returned home and made the arrangements we needed and went right back to Houston. On May 4, 2010, I took the fi rst dosage as part of the study and also received a blood transfusion. For the study, I was taking 1200 mg daily by mouth (in capsule form) of ARRY-614. After the fi rst fi ve days, I broke out in a rash! I had an appointment the next day and they decided to take me off the drug until my reaction had cleared up.As it turned out, an AA&MDSIF Patient and Family Conference was taking place in Houston soon after I started my stay at MD Anderson, so we decided to attend and it was time well spent! We met other MDS patients and met some of the presenters. By this time, my rash had cleared up. I saw one of the members of the clinical trial team who was speaking at the conference and he thought it was the dosage amount that had caused the rash. It was cut back to 900 mg, and I have been on that dose for over three years which is longer than any other MD Anderson patient who is on this trial study medication.

To what extent has the clinical trial affected your daily life?

Related to the trial itself, the follow up visits were fi rst, every four weeks, then it was extended to every eight weeks, and now it’s every 12 weeks. So these return trips to MD Anderson have become part of my routine. My blood draws were done locally once a week–now they are every two weeks. I see my local hematologist/oncologist at CRMC cancer center every four weeks. So the routine work and evaluations are done locally and the results are communicated back to MD Anderson. I have not had another transfusion since the one given the day I started with my fi rst treatment. My blood counts are now in the normal range, but barely so. They’re just at the line between normal and low. The platelet counts took the longest to come up to an acceptable level. As far as the rest of my activity–we still travel, I mow four acres, and I’m still active in Kiwanis. So this must mean my daily life has not been greatly aff ected!

What is your advice to patients who are considering or being advised to consider clinical trials as a treatment option?

From my experience, it was taking a chance, but many things in life can be like that. We didn’t know if it would help me unless I tried it. Plus, having a basis for comparison helps. The original treatment before the trial hadn’t helped me much, although I wasn’t getting any worse. I was just holding the line. But still the counts that I had then were far from normal. So I wanted something that might be better, knowing that a stem cell transplant was a fallback option. And the decision was easier to make when I realized that even if my treatment in this trial was not successful, I would still be making a small contribution to what is known about this experimental drug and for those it may be able to help. It could eventually help many people!

Would you participate in a clinical trial again?

Based on my experience in this trial, I certainly would. I still feel that even if the medicine had not worked as well for me as it has, it would still have been worth trying, for the researchers need to learn as much as possible so they can develop drugs that help many patients in the coming years.We feel so blessed to have benefi tted from this experience. We would like to thank all of those who have been a part of this experience; without them, I would not be where I am today.

Are you enjoying and learning from ? Help us improve The MDS Connection by sharing your opinions with us! Take our online survey at www.surveymonkey.com/s/MDSConnection

If you don’t have a computer, just call us at (800) 747-2820, option 1, and we’ll make sure your opinions are entered into the survey.

the ConnectionMDS

AA&MDSIF MDS Research Review | 2013This new publication includes over 20 easy-to-read summaries of abstracts presented at the major hematology/oncology scientifi c meetings in the past year, and contains some of the most up-to-date information on recent MDS research.

This publication can be downloaded at www.AAMDS.org/MDS2013update. You can request a print copy by contacting orders@aamds.org or by calling (201) 279-7202 x 116.

The Power and Promise of Partnership As a loyal supporter of the Aplastic Anemia & MDS International Foundation, you know the power and promise of partnership. You play an important role in our work on behalf of patients and families living with MDS. Thanks to your generous support, all of our programs and services for patients and their families are free of charge.

Please give your Gift of Hope this holiday season. You can count on AA&MDSIF to continue to provide answers, support, and hope…that’s our promise to you! Make your year-end gift today at www.aamds.org/YearEnd2013.

AA&MDSIF has earned the “exceptional” designation from Charity Navigator for achieving nine consecutive 4-star evaluations. AA&MDSIF is among only 1% of charities to receive this designation.

Make Your Gift Today!

“AA&MDSIF was there for me when I needed it most… with trusted information and support. This is why I contribute to AA&MDSIF.”

- Kate, MDS survivor

VOLUME 3, NUMBER 6, NOVEMBER 2013 • APLASTIC ANEMIA & MDS INTERNATIONAL FOUNDATIONSupported by an unrestricted education grant from Celgene Corporation.

The Pathologist’s Role in an MDS Diagnosis continued from cover

the ConnectionMDS

From a pathologist’s perspective, what factors complicate an MDS diagnosis?

One of the complicating issues is simply not having the right tools, which include the appropriate specimen and the necessary clinical information about the patient. It may be that a CBC is not provided, or there is no concurrent peripheral blood smear with the bone marrow, or that the specimen is inadequate–and this can happen frequently. The technique of obtaining the bone marrow specimen is very important. Common problems are the biopsy being too small or fragmented or it includes cartilage and bone rather than marrow. Or the aspirated bone marrow material may be diluted with peripheral blood, or the smears not prepared properly even if the material is adequate resulting in crushing of the cells. Finally, a perfect specimen may be diffi cult or impossible to interpret if the staining is not optimal. These pre-analytic issues are the most important ones that can create a problem. Fortunately, these are problems that can be resolved by attention to detail and by training. Then there are issues inherent to the disease. MDS is a diverse disease in terms of morphology with many reactive mimics. Although most often the bone marrow is hypercelluar, in about 5 to 10 percent of patients, it may be hypocellular when a distinction from aplastic anemia is very diffi cult. The dysplastic changes can be very subtle, and more often than not, in a hypocellular setting, when a diagnosis of MDS is dependent on cytogenetics, an adequate specimen for cytogenetic evaluation cannot be obtained. There are situations where the MDS may be associated with fi brosis, and distinction from myelofi brosis or a myeloproliferative/myelodysplastic overlap disease is very diffi cult. Similar to a hypocellular marrow, marrow aspirate material can often not be obtained from fi brotic marrows. There are situations when there is an associated hemolysis, or the bone marrow is obtained after repeated transfusions, which can alter the morphology and confound the interpretation. And I must mention there are inherited bone marrow failure syndromes that may present for the fi rst time at an older age. These bone marrow failure syndromes may not only mimic MDS, but they often predispose to MDS. The distinction is important for management and requires specifi c tools for diagnosis and involvement of geneticists and other specialty physicians.

How involved are pathologists in the diagnostic process in determining an MDS classifi cation or subtype?

I would say very involved, since the diagnosis is made and confi rmed by the pathologist. The blast percentage–important for prognosis–is also determined by the pathologist, so the

pathologist is very involved in the diagnosis, classifi cation, and generation of the IPSS or other risk score necessary for outlining the treatment strategy for the patient. The involvement does not end with a diagnosis. The pathologist is involved in the follow up–in assessing response to treatment or evolution of the disease.

Should patients be asking their doctor about what happens ‘behind the scenes’ in the pathology lab?

They should be curious to know what happens to the specimen obtained from their body. I think it is important for them to know the processes involved in arriving at a diagnosis. Patients should know about the procedure and ask what the tests are for; and if the specimen is submitted, if cytogenetics will be performed. They need to understand that many quality control measures are required to ensure the pathologist gets the right materials. MDS is often a diffi cult diagnosis, and many patients move from one institution to another before they fi nd a doctor they are most comfortable with. In most cases, a bone marrow procedure is performed at each institution. So there may be several reports with diff erent wording and interpretations, and since the disease may evolve with time, to get a complete picture, as a hematopathologist, I would like to evaluate all the previous materials.For continuity of care, it is important to have copies of all their reports. Generally, the patient does not directly contact the pathologist for questions regarding the report. The treating physician is the better person to answer their questions and they should be the fi rst contact, but the patient should know who the hematopathologist is, and if they can contact them if they wish to.

What is most important for patients to know and remember about the pathologist’s involvement in arriving at an MDS diagnosis?

Most patients do not know there is another physician involved in making the diagnosis, other than the one they see at appointments who reads out the report to them. They should understand that the diagnosis and management of MDS is a team approach. Also, if I were the patient, I would want to know if the physician reading their slides has a specialty certifi cation.

How important is it for patients to have a pathologist who sees a signifi cant number of cases of MDS and knows what to communicate to the treating physician?

It is essential. Hematopathology is a very specialized fi eld. Just as a breast or prostate biopsy is best examined by a person who has special training in these fi elds, has seen many of these biopsies, and knows what to look for, a bone marrow biopsy is best examined by a pathologist with special training in the fi eld, and preferably with many years of experience. Having worked in academic institutions that receive many consult cases, I have seen instances of both over-diagnosis and under-diagnosis of MDS.

Interviews with the Experts The Patient Perspective Jim Westmoreland’s Pathto a Clinical Trial

James Westmoreland, age 78, of Cookeville, Tennessee, is a retired Associate Vice President for Information Technology Services from Tennessee Technological University. Here, he recounts his story of his participation in a clinical trial at the MD Anderson Cancer Center in Houston, Texas.

How did you fi rst learn about a clinical trial?

Finding out I had a problem happened in an interesting way. I belong to a Kiwanis club and had donated blood off and on, but not on a regular basis. In January 2008, a fellow Kiwanian announced that the Bloodmobile was at the YMCA so I decided to go and donate. They found I was anemic and thus I was unable to donate blood. All my routine medical tests done in October 2007 had been normal. I went to my doctor and blood tests were done–with abnormalities found,

so he wanted me to have more tests completed at Cookeville Regional Medical Center (CRMC) hospital lab. I went there and more tests were made, all having similar results, so I was next referred to the CRMC cancer center. My red and white blood cell counts were low, and my platelet count was found to be very low. They decided to do a bone marrow biopsy right away. A few weeks later, I received the diagnosis of myelodysplastic syndrome (MDS). This all started just by deciding to go to the blood drive a month earlier! In February 2008, I began receiving azacitidine (Vidaza®) on a seven-day treatment schedule that had harsh side eff ects, so it was cut back to a fi ve-day cycle. From that point, over the next two years, I had 25 weeks of this treatment. I also tried decitabine (Dacogen®) and lenalidomide (Revlimid®) which didn’t work as well, so I ended up going back to azacitidine. During this time, I had 92 blood transfusions. I had planned an out of town trip here in Tennessee and my doctor said I should not go. Having travel limitations posed a problem because I had been elected to a Kiwanis position that required travel to surrounding states and attend conventions in them. I had one thing going in my favor–I was otherwise healthy. I’m a retired Marine and stayed in fairly good shape over the decades since. I wanted to know what I had to do to be able to travel. We timed the transfusions to occur so that my blood counts would be optimal for traveling. In December 2009, my doctor in Cookeville referred me to the Sara Cannon Cancer Center in Nashville to discuss the possibility of a stem cell transplant. It’s true than some treatment centers will not consider a stem cell transplant for someone my age. If I had a matched relative donor, they would have done the transplant. But because I was adopted, I have no knowledge of my actual family background. My three children were tested but were not a match. So a stem cell transplant using one of my children as donors was not an option at the center in Nashville, because they did not do matched unrelated stem cell transplants. However, the doctor at Sara Cannon Cancer Center had come from MD Anderson to work at the center. He thought MD Anderson would be willing to try a matched unrelated stem cell transplant and was willing to make the connection for me.

How did you arrive at deciding to take part in a clinical trial?

We went to MD Anderson in Houston in April 2010, and went through all the testing over a week or more and I was accepted into the stem cell transplant program. They had found two matched unrelated donors for me, but at that point, we did not know if these two people were still available or willing to donate. At this time, they asked if I would consider being part of Phase 1 of a clinical trial as an alternative. It did not take a lot of discussion with my wife for us to agree to participate in the trial study, knowing the diffi culty that could be experienced with the transplant option, especially at my age.

What were the steps you had to take to apply, be evaluated, and accepted into the trial?

At MD Anderson, once I opted to be considered for the clinical trial, they had me go down the hall to see one of the doctors involved with the trial study. They already had my lab information so some of the evaluation process was already complete. This was more of an interview for the study leaders to decide if I was right for inclusion in the trial. I was accepted, and it was made clear that the stem cell transplant would still be an option for the next six months –this was a good fallback option. This is a Phase 1 study during which patients with low or intermediate-1 risk MDS will receive an investigational study drug, ARRY-614.They wanted to start me right away, but didn’t realize I had to take care of things at home fi rst before I could come to MD Anderson for an extended stay. We returned home and made the arrangements we needed and went right back to Houston. On May 4, 2010, I took the fi rst dosage as part of the study and also received a blood transfusion. For the study, I was taking 1200 mg daily by mouth (in capsule form) of ARRY-614. After the fi rst fi ve days, I broke out in a rash! I had an appointment the next day and they decided to take me off the drug until my reaction had cleared up.As it turned out, an AA&MDSIF Patient and Family Conference was taking place in Houston soon after I started my stay at MD Anderson, so we decided to attend and it was time well spent! We met other MDS patients and met some of the presenters. By this time, my rash had cleared up. I saw one of the members of the clinical trial team who was speaking at the conference and he thought it was the dosage amount that had caused the rash. It was cut back to 900 mg, and I have been on that dose for over three years which is longer than any other MD Anderson patient who is on this trial study medication.

To what extent has the clinical trial affected your daily life?

Related to the trial itself, the follow up visits were fi rst, every four weeks, then it was extended to every eight weeks, and now it’s every 12 weeks. So these return trips to MD Anderson have become part of my routine. My blood draws were done locally once a week–now they are every two weeks. I see my local hematologist/oncologist at CRMC cancer center every four weeks. So the routine work and evaluations are done locally and the results are communicated back to MD Anderson. I have not had another transfusion since the one given the day I started with my fi rst treatment. My blood counts are now in the normal range, but barely so. They’re just at the line between normal and low. The platelet counts took the longest to come up to an acceptable level. As far as the rest of my activity–we still travel, I mow four acres, and I’m still active in Kiwanis. So this must mean my daily life has not been greatly aff ected!

What is your advice to patients who are considering or being advised to consider clinical trials as a treatment option?

From my experience, it was taking a chance, but many things in life can be like that. We didn’t know if it would help me unless I tried it. Plus, having a basis for comparison helps. The original treatment before the trial hadn’t helped me much, although I wasn’t getting any worse. I was just holding the line. But still the counts that I had then were far from normal. So I wanted something that might be better, knowing that a stem cell transplant was a fallback option. And the decision was easier to make when I realized that even if my treatment in this trial was not successful, I would still be making a small contribution to what is known about this experimental drug and for those it may be able to help. It could eventually help many people!

Would you participate in a clinical trial again?

Based on my experience in this trial, I certainly would. I still feel that even if the medicine had not worked as well for me as it has, it would still have been worth trying, for the researchers need to learn as much as possible so they can develop drugs that help many patients in the coming years.We feel so blessed to have benefi tted from this experience. We would like to thank all of those who have been a part of this experience; without them, I would not be where I am today.

Are you enjoying and learning from ? Help us improve The MDS Connection by sharing your opinions with us! Take our online survey at www.surveymonkey.com/s/MDSConnection

If you don’t have a computer, just call us at (800) 747-2820, option 1, and we’ll make sure your opinions are entered into the survey.

the ConnectionMDS

AA&MDSIF MDS Research Review | 2013This new publication includes over 20 easy-to-read summaries of abstracts presented at the major hematology/oncology scientifi c meetings in the past year, and contains some of the most up-to-date information on recent MDS research.

This publication can be downloaded at www.AAMDS.org/MDS2013update. You can request a print copy by contacting orders@aamds.org or by calling (201) 279-7202 x 116.

The Power and Promise of Partnership As a loyal supporter of the Aplastic Anemia & MDS International Foundation, you know the power and promise of partnership. You play an important role in our work on behalf of patients and families living with MDS. Thanks to your generous support, all of our programs and services for patients and their families are free of charge.

Please give your Gift of Hope this holiday season. You can count on AA&MDSIF to continue to provide answers, support, and hope…that’s our promise to you! Make your year-end gift today at www.aamds.org/YearEnd2013.

AA&MDSIF has earned the “exceptional” designation from Charity Navigator for achieving nine consecutive 4-star evaluations. AA&MDSIF is among only 1% of charities to receive this designation.

Make Your Gift Today!

“AA&MDSIF was there for me when I needed it most… with trusted information and support. This is why I contribute to AA&MDSIF.”

- Kate, MDS survivor

continued

Interviews with the ExpertsThe Pathologist’s Role in an MDS Diagnosis

the ConnectionMDS

Fighting Bone Marrow Failure Diseases Through Patient Support and Research Since 1983 www.AAMDS.org

Zeba N. Singh, M.B.B.SUniversity of Maryland Medical Center Zeba N. Singh, M.B.B.S. is assistant professor of pathology in the Division of Hematopathology, at the University of Maryland Medical Center in Baltimore, Maryland. She is Board-certifi ed in anatomic pathology, hematopathology, and molecular genetic pathology. With more than 15 years of

hematopathology experience, she has been practicing hematopathology in the United States since 2007. Before coming to the United States, she was a practicing hematopathologist in premier academic institutions in New Delhi, India. Her particular areas of interest are myelodysplastic syndromes, acute leukemia, myeloproliferative/myelodysplastic syndromes and other bone marrow failure syndromes, and molecular hematopathology.

Can you explain in general terms what pathologists do and what their specifi c roles are in an MDS diagnosis?

The pathologist is involved at every stage in the diagnosis and subsequent follow up of a patient being treated for MDS. Often, when the patient is detected to have low blood counts on a CBC, by evaluating a peripheral blood smear, the pathologist alerts the clinician that there may be underlying MDS and the patient should be investigated further in this direction. The pathologist is the one who examines the bone marrow specimen, confi rms the diagnosis of MDS, and looks for the morphological features that are required to generate the prognostic score of high-risk or low-risk disease necessary for management decisions. Since the bone marrow sample is sent to the laboratory, often the pathologist is there to triage the specimen and see that it is sent to the cytogenetic lab, and for appropriate molecular testing to make sure all the necessary tests are conducted.

Important Information for People Living with Myelodysplastic SyndromesVOLUME 3, NUMBER 6, NOVEMBER 2013

Find us on Facebook at www.facebook.com/aamds

Connect online with other MDS patients

What should the two-way interaction be between an MDS patient’s treating physician and the pathologist?

Communication between the pathologist and clinician is very important in the diagnosis of MDS. A report by the pathologist of dyspoietic or abnormal morphological appearance of the blood cells on the peripheral blood smear of a patient with low blood counts may often initiate the further evaluation of MDS by the clinician. However, neither low counts nor dyspoiesis are specifi c only to MDS, and several other clinical conditions may mimic MDS morphologically. Dyspoiesis in peripheral blood or bone marrow is not enough to make an MDS diagnosis. Talking to the clinician to fi nd out the details of the patient history, results of other lab tests that may have been ordered, and other medical issues that may be aff ecting the patient are important for the correct interpretation of dyspoiesis, and to make a diagnosis of MDS. Sometimes, the pathologist has to ask the clinician to order additional tests before a diagnosis can be rendered. An ongoing communication is needed to make this happen.There are situations when a defi nite categorization of MDS may not be possible, or there are co-morbid conditions confounding the interpretation. In these circumstances in particular, a discussion between the clinician and pathologist is necessary to resolve the concerns. In academic centers like ours, all newly diagnosed patients are discussed in a team setting at an MDS or leukemia meeting, attended by the treating physician, oncologist, hematopathologists, radiologists, and other specialty physicians as necessary, so it is defi nitely a team-based approach.

Building on the successes and strong attendance at the 2013 Regional Patient and Family Conferences, AA&MDSIF announces its conference series for 2014, to occur in six metropolitan areas. Registration for all six locations will be available on or about January 1, 2014.

2014 Patient and Family Conferences are Announced

If you weren’t able to attend one of our 2013 conferences, be sure to sign up for 2014.

*Tentative schedule. Dates and locations subject to change.

If you’re interested in seeing what the MDS research community is doing, visit www.AAMDS.org/Research.

� ere you’ll � nd a selection of links to article abstracts of published MDS research from many international journals. � ese can be on general to highly specialized topics and are sometimes authored or co-authored by AA&MDSIF Medical Advisory Board members.

Selected articles have been summarized in plain language writing, making highly scienti� c and medical facts and data understandable for the lay reader.

You’ll also meet some of the brightest minds in MDS research – the AA&MDSIF research grant recipients. Read about their projects and progress and their own thoughts on what their work is contributing to the broader � eld of MDS research.

Read about the latest MDS research from dedicated researchers

Los Angeles APRIL 5

Philadelphia MAY 17

Louisville JULY 26

Detroit SEPTEMBER 20

New Orleans OCTOBER 11

Miami NOVEMBER 8

Search for published research by topics, authors, and journals at www.AAMDS.org/Research

Fighting Bone MarrowFailure Diseases Through Patient Support andResearch Since 1983www.AAMDS.org

100 Park Ave., Suite 108

Rockville, MD 20850

FREE PHONE SUPPORT FOR MDS PATIENTS, FAMILIES, AND CAREGIVERSDo you need to speak with someone directly

about myelodysplastic syndromes (MDS)?

Please contact our Patient Educator at (800) 747-2820 option 1, or by email at info@aamds.org. Our Patient Educator communicates with people all over the world, answering a wide range of questions about MDS, including information on treatment options, clinical trials, fi nancial resources, and more.

PEER SUPPORT NETWORKLet this AA&MDSIF resource help you!

The Peer Support Network is a national network of trained volunteers, including patients, caregivers, and family members, who offer information, personal experience, coping strategies, problem solving skills, and informational resources to people just like themselves. Speaking with a Peer Support Network volunteer is a great way to gather information and receive emotional support from someone whose life has also been affected by bone marrow failure disease.

To connect with a Peer Support Network volunteer, call (800) 747-2820 option 1, and speak with our Patient Educator, who will match you with one of our volunteers. You can also email her at info@aamds.org.

Help is Here for MDS Patients

NO INTERNET ACCESS AT HOME? Internet-connected computers are found in many locations, including: • Retirement homes • Apartment community rooms • Public libraries • Senior centers And it’s almost certain you know someone (relatives, neighbors, friends) who is connected!

Connect with us at www.AAMDS.org!

Contact Us

help@aamds.org (301) 279-7202 or (800) 747-2820

• Educational materials Read Your Guide to Understanding MDS, a free patient guide that explains in plain language what you need to know to understand MDS—why it happens, what to do about it, how to receive your best care—and tips for living well with MDS.

Also available are What to Expect from Treatment: A Guide to Understanding FDA-Approved Drug Therapies for Myelodysplastic Syndromes (MDS) and Standing Up for Your Health: Self-Advocacy forPatients with Bone Marrow Failure Diseases.

• Print and electronic news Stay current with the latest information on areas relevant to MDS through our other newsletters: Insider (print) and eInsider (electronic).

• Patient connectionsConnect in person at a regional Community of Hope event (for more information, please contact crews@aamds.org).

• Make an online dedication Dedicate a day in honor or memory of a loved one or to celebrate your own life, on our 2013 Calendar of Hope, www.AAMDS.org/Dedication.

www.AAMDS.org – Your best resource for medical and personal perspectives on myelodysplastic syndromes (MDS)

Aplastic Anemia & MDS International Foundation

Important information for people living with myelodysplastic syndromes

the ConnectionMDS

Discover the ‘What is MDS?’ iPad appUsing this iPad app, patients and their families can learn about MDS in several ways:

• Watch the What is MDS? video that provides a basic animated description of the disease.

• Read, listen to, or view the Frequently Asked Questions about MDS.

• Read the extensive disease-related content within the app, including information on why MDS results in low blood counts and the associated symptoms. Information about risk levels, treatments, managing side e� ects, staying on treatment, and preparing for o� ce visits is also provided.

� e ‘What is MDS?’ iPad app can be downloaded from www.apple.com/itunes

Learn more about the iPad app and watch the What Is MDS? video at www.AAMDS.org/MDSapp

continued

Interviews with the ExpertsThe Pathologist’s Role in an MDS Diagnosis

the ConnectionMDS

Fighting Bone Marrow Failure Diseases Through Patient Support and Research Since 1983 www.AAMDS.org

Zeba N. Singh, M.B.B.SUniversity of Maryland Medical Center Zeba N. Singh, M.B.B.S. is assistant professor of pathology in the Division of Hematopathology, at the University of Maryland Medical Center in Baltimore, Maryland. She is Board-certifi ed in anatomic pathology, hematopathology, and molecular genetic pathology. With more than 15 years of

hematopathology experience, she has been practicing hematopathology in the United States since 2007. Before coming to the United States, she was a practicing hematopathologist in premier academic institutions in New Delhi, India. Her particular areas of interest are myelodysplastic syndromes, acute leukemia, myeloproliferative/myelodysplastic syndromes and other bone marrow failure syndromes, and molecular hematopathology.

Can you explain in general terms what pathologists do and what their specifi c roles are in an MDS diagnosis?

The pathologist is involved at every stage in the diagnosis and subsequent follow up of a patient being treated for MDS. Often, when the patient is detected to have low blood counts on a CBC, by evaluating a peripheral blood smear, the pathologist alerts the clinician that there may be underlying MDS and the patient should be investigated further in this direction. The pathologist is the one who examines the bone marrow specimen, confi rms the diagnosis of MDS, and looks for the morphological features that are required to generate the prognostic score of high-risk or low-risk disease necessary for management decisions. Since the bone marrow sample is sent to the laboratory, often the pathologist is there to triage the specimen and see that it is sent to the cytogenetic lab, and for appropriate molecular testing to make sure all the necessary tests are conducted.

Important Information for People Living with Myelodysplastic SyndromesVOLUME 3, NUMBER 6, NOVEMBER 2013

Find us on Facebook at www.facebook.com/aamds

Connect online with other MDS patients

What should the two-way interaction be between an MDS patient’s treating physician and the pathologist?

Communication between the pathologist and clinician is very important in the diagnosis of MDS. A report by the pathologist of dyspoietic or abnormal morphological appearance of the blood cells on the peripheral blood smear of a patient with low blood counts may often initiate the further evaluation of MDS by the clinician. However, neither low counts nor dyspoiesis are specifi c only to MDS, and several other clinical conditions may mimic MDS morphologically. Dyspoiesis in peripheral blood or bone marrow is not enough to make an MDS diagnosis. Talking to the clinician to fi nd out the details of the patient history, results of other lab tests that may have been ordered, and other medical issues that may be aff ecting the patient are important for the correct interpretation of dyspoiesis, and to make a diagnosis of MDS. Sometimes, the pathologist has to ask the clinician to order additional tests before a diagnosis can be rendered. An ongoing communication is needed to make this happen.There are situations when a defi nite categorization of MDS may not be possible, or there are co-morbid conditions confounding the interpretation. In these circumstances in particular, a discussion between the clinician and pathologist is necessary to resolve the concerns. In academic centers like ours, all newly diagnosed patients are discussed in a team setting at an MDS or leukemia meeting, attended by the treating physician, oncologist, hematopathologists, radiologists, and other specialty physicians as necessary, so it is defi nitely a team-based approach.

Building on the successes and strong attendance at the 2013 Regional Patient and Family Conferences, AA&MDSIF announces its conference series for 2014, to occur in six metropolitan areas. Registration for all six locations will be available on or about January 1, 2014.

2014 Patient and Family Conferences are Announced

If you weren’t able to attend one of our 2013 conferences, be sure to sign up for 2014.

*Tentative schedule. Dates and locations subject to change.

If you’re interested in seeing what the MDS research community is doing, visit www.AAMDS.org/Research.

� ere you’ll � nd a selection of links to article abstracts of published MDS research from many international journals. � ese can be on general to highly specialized topics and are sometimes authored or co-authored by AA&MDSIF Medical Advisory Board members.

Selected articles have been summarized in plain language writing, making highly scienti� c and medical facts and data understandable for the lay reader.

You’ll also meet some of the brightest minds in MDS research – the AA&MDSIF research grant recipients. Read about their projects and progress and their own thoughts on what their work is contributing to the broader � eld of MDS research.

Read about the latest MDS research from dedicated researchers

Los Angeles APRIL 5

Philadelphia MAY 17

Louisville JULY 26

Detroit SEPTEMBER 20

New Orleans OCTOBER 11

Miami NOVEMBER 8

Search for published research by topics, authors, and journals at www.AAMDS.org/Research

Fighting Bone MarrowFailure Diseases Through Patient Support andResearch Since 1983www.AAMDS.org

100 Park Ave., Suite 108

Rockville, MD 20850

FREE PHONE SUPPORT FOR MDS PATIENTS, FAMILIES, AND CAREGIVERSDo you need to speak with someone directly

about myelodysplastic syndromes (MDS)?

Please contact our Patient Educator at (800) 747-2820 option 1, or by email at info@aamds.org. Our Patient Educator communicates with people all over the world, answering a wide range of questions about MDS, including information on treatment options, clinical trials, fi nancial resources, and more.

PEER SUPPORT NETWORKLet this AA&MDSIF resource help you!

The Peer Support Network is a national network of trained volunteers, including patients, caregivers, and family members, who offer information, personal experience, coping strategies, problem solving skills, and informational resources to people just like themselves. Speaking with a Peer Support Network volunteer is a great way to gather information and receive emotional support from someone whose life has also been affected by bone marrow failure disease.

To connect with a Peer Support Network volunteer, call (800) 747-2820 option 1, and speak with our Patient Educator, who will match you with one of our volunteers. You can also email her at info@aamds.org.

Help is Here for MDS Patients

NO INTERNET ACCESS AT HOME? Internet-connected computers are found in many locations, including: • Retirement homes • Apartment community rooms • Public libraries • Senior centers And it’s almost certain you know someone (relatives, neighbors, friends) who is connected!

Connect with us at www.AAMDS.org!

Contact Us

help@aamds.org (301) 279-7202 or (800) 747-2820

• Educational materials Read Your Guide to Understanding MDS, a free patient guide that explains in plain language what you need to know to understand MDS—why it happens, what to do about it, how to receive your best care—and tips for living well with MDS.

Also available are What to Expect from Treatment: A Guide to Understanding FDA-Approved Drug Therapies for Myelodysplastic Syndromes (MDS) and Standing Up for Your Health: Self-Advocacy forPatients with Bone Marrow Failure Diseases.

• Print and electronic news Stay current with the latest information on areas relevant to MDS through our other newsletters: Insider (print) and eInsider (electronic).

• Patient connectionsConnect in person at a regional Community of Hope event (for more information, please contact crews@aamds.org).

• Make an online dedication Dedicate a day in honor or memory of a loved one or to celebrate your own life, on our 2013 Calendar of Hope, www.AAMDS.org/Dedication.

www.AAMDS.org – Your best resource for medical and personal perspectives on myelodysplastic syndromes (MDS)

Aplastic Anemia & MDS International Foundation

Important information for people living with myelodysplastic syndromes

the ConnectionMDS

Discover the ‘What is MDS?’ iPad appUsing this iPad app, patients and their families can learn about MDS in several ways:

• Watch the What is MDS? video that provides a basic animated description of the disease.

• Read, listen to, or view the Frequently Asked Questions about MDS.

• Read the extensive disease-related content within the app, including information on why MDS results in low blood counts and the associated symptoms. Information about risk levels, treatments, managing side e� ects, staying on treatment, and preparing for o� ce visits is also provided.

� e ‘What is MDS?’ iPad app can be downloaded from www.apple.com/itunes

Learn more about the iPad app and watch the What Is MDS? video at www.AAMDS.org/MDSapp