Staying Abreast of the Latest News in Myeloma: Tips from an Advocate

Staying Abreast of the Latest News in Myeloma: Tips from an Advocate from Patient Empowerment Network on Vimeo.

Keeping up with all the changes in myeloma treatment and research can be daunting. Myeloma survivor and advocate, Jack Aiello, shares his tips for keeping up with the latest, including a list of myeloma educational resources.

Jack Aiello is a multiple myeloma survivor and patient advocate. He is involved with a number of advocacy organizations around the country, including serving on the Board of Directors for the Patient Empowerment Network. More about Jack here.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

Should You Consider a Second Opinion? Advice from a Myeloma Advocate

MPN Office Visit Planner

Office Visit Planner

The Truth About Myeloma Treatment Side Effects 

Hesitant to Join a Support Group? Encouraging Advice from an Advocate

Transcript:

Jack:                           

So, it’s interesting. I’ve mentioned previously how much is changing in myeloma, and I’ve been asked a question of, “How do you stay abreast of all of those new changes?”

And there are several ways. There are some excellent organizations that focus on myeloma. The International Myeloma Foundation, the Multiple Myeloma Research Foundation, the Leukemia & Lymphoma Society, Myeloma CrowdCare are just four of them to mention. PEN is Patient Empowerment Network, Patient Power is another site that both offer expertise and help with myeloma. So, websites is a great tool. Many of those websites also offer both webinars and seminars and that can be an excellent resource to learn about myeloma or ask specific questions and get them answered during a live webinar.

And typically, all those webinars are recorded for later replays, so that you can listen to them if you weren’t available to listen to them live. I’m fortunate also that I’m able to attend several of the myeloma conferences. There’s a conference called ASH, the American Society of Hematology, that I’ve attended for the last 10 years. There’s a meeting of the International Myeloma Working Group that I’ve been fortunate to be invited to for the last six or seven years.

These are meetings that doctors meet at to determine best treatments for patients; they provide the latest on research of newer treatments for patients as well, and I get to hear it firsthand. And I think, as I said, the support groups are a good way to stay abreast of the information was well.

Most patients don’t want or need or are not going to get as deeply as involved as I am, but those support groups are a terrific resource for hearing what’s happened over the last month or two. There’s a drug just approved last month for myeloma, and there have been drugs approved previously in the years previous to 2019. So, I think that there are a number of ways to really become educated and more knowledgeable about myeloma.                            

Is AML Genetic?

Dr. Daniel Pollyea discusses the relationship between acute myeloid leukemia (AML) and genetics and addresses if the disease could be inherited within a family.

Dr. Daniel Pollyea is Clinical Director of Leukemia Services in the Division of Medical Oncology, Hematologic Malignancies and Blood and Marrow Transplant at University of Colorado Cancer Center.

More Fact or Fiction?

Related Resources

Key Genetic Testing After an AML Diagnosis

Follow Up Visit Planner for AML Patients

Fact or Fiction? AML Resource Guide

Predictive (Familial) Genetic Testing vs. Cancer Genetic Testing: What's the Difference?

Predictive (Familial) Genetic Testing vs. Cancer Genetic Testing: What’s the Difference?

 


Transcript:

Dr. Pollyea:

So, this is a disease of the genome. So, I mean, in a lot of respects it is a genetic disease. But the question is very different when you ask is this an inherited genetic disease? Is this disease due to a gene that I inherited from a parent or could pass along to a child?

For many, many years, the answer from the medical community was, “No.” This was not considered to be a disease that clustered in families or that could be inherited. We now know that that’s not necessarily the case. There are some very rare cases where this does seem to travel in families or cluster in families. And we’re now beginning to understand who those people are and what those genes are.

But the vast majority of people with this disease d  id not inherit a gene to contribute to it and cannot pass this along to a child. This is a random, spontaneous event that occurred within one person’s own body and is not traveling within family. So, we’re learning more and more about this, but really, the vast majority of this is not an inherited genetic condition.

Past Patient Chats

2022

2021

2020

2019

2018

2017

2016

  • December 23, 2016 & January 6, 2017: No Patient Chat due to Holidays
  • December 9, 2016: Looking Back… Looking Ahead… Empowered #patientchat
  • November 25, 2016: No Patient Chat this week due to Thanksgiving holiday (U.S.)
  • November 11, 2016: “Health Share” Empowered #patientchat
  • November 6, 2016: Popup #patientchat – Hacking Healthcare with @TheBigHeist: Open Enrollment & DPC
  • October 21, 2016: Whole Health & Wellness with @justagoodlife
  • October 6, 2016: Popup #patientchat – Health Awareness Days
  • September 30, 2016: Flipping the Wait #MedX
  • September 16, 2016: Mental Health and Chronic Disease #MedX
  • September 2, 2016: No Patient Chat this week due to Labor Day Holiday Weekend (U.S.)
  • August 19, 2016: An Integrative Medicine Primer with a Holistic Nurse
  • August 5, 2016: Quality of Life – Define it. Share it. Live it. with Alan Brewington
  • July 22, 2016: Finding Help in the Healthcare Maze – Where to Start
  • July 10, 2016: Popup #patientchat – Medical Trauma
  • June 26, 2016: Popup #patientchat – “The Open Patient” Documentary Discussion and Chat with @TheLizArmy @StevenKeating
  • June 10, 2016: Citizen Science: Hacking Healthcare with John Novack @teaminspire
  • June 5, 2016: Popup #patientchat – How to Take Charge of your Medical Information with Richard Kreis
  • May 27, 2016: No Patient Chat this week due to Memorial Day Holiday Weekend (U.S.)
  • May 13, 2016: How to Create Work-Life Harmony with Chronic Disease
  • April 22, 2016: Getting to the Heart of Patient-Centered Care with Dr. Rob Lamberts
  • April 1, 2016: How to Communicate with Your Healthcare Team
  • March 18, 2016: How to Be Your Own Best Advocate with Patient Empowerment Network (@power4patients)
  • March 4, 2016: Rare Disease Advocacy with @RareCandace
  • February 19, 2016: Using Technology for Emotional Support, with CanSurround
  • February 5, 2016: Adjusting to a Family Member’s Diagnosis #patientchat with @caregiving
  • January 31, 2016: #popup #patientchat – How do we empower more people in their health?
  • January 22, 2016: Who’s in Your Corner? – Building Your Healthcare Team, Empowered #patientchat
  • January 8, 2016: Empowered #patientchat – Self-care Goals

2015

  • December 25, 2015: No Patient Chat this week due to Holidays
  • December 11, 2015: The Empowered Patient Year in Review
  • November 27, 2015: No Patient Chat this week due to Thanksgiving holiday
  • November 13, 2015: Tips for Improved Patient/Doctor Communication with Edward Leigh, MA
  • October 30, 2015: Empowered #PatientChat with Devices for Dignity
  • October 16, 2015: Tools to take charge of your health
  • September 25, 2015: Live from medx
  • September 4, 2015: Patient Experience with CancerGeek and Dr. Gia Sison
  • August 21, 2015: Talking telehealth
  • August 7, 2015: How do we empower more people in their health?
  • July 24, 2015: Challenges in scheduling medical visits?!
  • July 10, 2015: Getting your healthcare records organized
  • June 26, 2015: Where can I get the latest science that matters to me? with Tal Givoly of Medivizor
  • June 12, 2015: How patients can get involved in research & trials with special guest Anne Marie Ciccarella
  • May 29, 2015: Why are patient stories important?
  • May 15, 2015: How to coordinate care when you have more than one doctor
  • May 1, 2015: Empowered #PatientChat with Flip the Clinic
  • April 3, 2015: Tending to your mental health with special guest Kati Morton, LMFT
  • March 20, 2015: Patient Chat with Grant Perry of PatientPilot
  • March 6, 2015: How can you speak up and be heard at a doctor’s visit?
  • February 20, 2015: Family Caregivers and Patients Facing End of Life Together with Denise Brown of Caregiving.com
  • February 6, 2015: How can we hack the waiting room?
  • January 23, 2015: Online Support Groups: How can they help?” with Dr. Vincent Caimano
  • December 26, 2014 & January 9, 2015: No Patient Chat due to Holidays
  • December 12, 2014 at 10am PT: John Novack from Inspire, Using social networks to improve your health
  • November 28, 2014: No Patient Chat this week due to Thanksgiving holiday
  • November 14, 2014: Dr. Goldina Erowele Founder, CareNovate Brands
  • October 31, 2014: Martine Ehrenclou, M.A., Author of “The Take-Charge Patient: How You Can Get The Best Medical Care” 
  • October 17, 2014: What is an #epatient and why should I care? epatient101.com
  • October 3, 2014: How to Find a Quality Doctor (topic inspired by this AP-Norc poll)
  • September 19, 2014: “How to Make Meaningful Doctor & Patient Connections Online” with Lisa Johnson from Sermo.com, “#1 physicians’ social network in the US”
  • September 5, 2014 at 10am PT: “Live from MedX” with Emily Lu
  • August 22, 2014 at 10am PST: “Storytelling for Healing: How Sharing your Story Helps” with special guest Amy Ohm from TreatmentDiaries.com Chat details here  
  • August 8, 2014 at 10am PST: “Hospital Stays the #epatient Way”  with special guest #epatient Mark-John Clifford of Health in the Laugh Lane 
  • July 25, 2014: Empowering Women to Improve their Gynecologic Health featuring Dee & Christina from Gyn Cancer (#gyncsm) @gyncsm
  • July 11, 2014: Overcoming Challenges in Requesting Past Medical Records
  • June 25, 2014: Talking to Your Doctor  featuring Zack Berger, MD, PhD
  • June 13, 2014: Building a Healthcare Team
  • May 30, 2014: Working with Your Caregiver to Create a Plan that Works
  • May 16, 2014: How does an empowered patient approach prevention?
  • May 2, 2014: I’ve decided to become an empowered patient. Now what?
  • April 18, 2014: How to Create Patient-Centered Technology featuring Jack Imaging 

Patientchat Etiquette & Guidelines

Chat etiquette & guidelines:

  • Patient Chat is appropriate for patients, doctors, nurses, caregivers, mental health professionals, complementary care providers,  loved ones of patients, basically anyone and everyone that cares about improving the healthcare system and a patient’s journey through it.
  • Please try to stay on topic.
  • No problem if you jump in late, just say hello and join in.
  • Please don’t pop in and promote a business or product. If it is relevant to the discussion, feel free to share. We have had some companies not participate but just tweet out links. Please participate in the chat instead. Chatters will click through to your profile if they’re interested in you.
  • Please say hello even if you’re just following along. It helps us gage if the chats are reaching people.
  • Please share the chats with other people and Retweet as much as you can to help spread the word.
  • Discussion topics and questions are asked with a T1, T2, T3, etc. Be sure to include the appropriate number in your answer, T1, T2, T3. For example: We ask, “T1. What is your favorite color? #patientchat” You respond, “T1. Blue. #patientchat”
  • Be sure to include the hashtag in your tweets and responses. If you use a tool like tchat.io, it will automatically append the #patientchat hashtag to your tweets.
  • Feel free to challenge the status quo with your responses and be creative! However, be mindful and polite at the same time.
  • Be respectful, even if you disagree with someone. Focus on dialogue and solutions.
  • Please don’t discount other people’s stories and experiences. You may disagree & think your way is better. Honor others’ experiences that are different from your own.
  • As #patientchat has grown in its reach, we regularly become a trending topic on Twitter. When this happens, you may see unrelated posts in the Patient Chat feed. This happens because other people try to abuse trending topics on Twitter and promote unrelated causes and spam. It is still safe to participate in Patient Chats. If this happens, you can BLOCK or REPORT the abusive tweet directly in Twitter. See Twitter’s abuse report guidelines. 

General Resources

Non-Hodgkin’s Lymphoma Resources

How Can Patients Advocate for Genetic Testing?

How Can Patients Advocate for Genetic Testing? from Patient Empowerment Network on Vimeo.

How can chronic lymphocytic leukemia (CLL) patients ensure they are getting the appropriate genetic testing? Dr. Danielle Brander shares resources and advice to help patients become informed and empowered to ask questions and advocate for better care. Want to Learn More? Download the CLL Genetic Testing Resource Guide here.

Dr. Danielle Brander is Director of the CLL and Lymphoma Clinical Research Program at Duke Cancer Institute. Learn more about Dr. Brander.

See More From Your CLL Navigator

Related Resources

 CLL Genetic Tests: How Do Results Impact Treatment and Care?   CLL Genetic Testing Explained  Predictive (Familial) Genetic Testing vs. Cancer Genetic Testing: What’s the Difference?

Transcript:

Dr. Brander:

Patients and their caregivers can advocate for testing by having the information at hand as you meet with your oncology team. There are some tests that are very helpful around the time of diagnosis, especially the FISH test. We talked about how the FISH helps give information about what to expect and what treatment selections to use moving forward, but often these FISH panels also include testing to almost double check and exclude that there’s different type of lymphoma other than CLL present.

So all patients should have FISH at the time of diagnosis regardless of whether they need treatment or not.

There are many good resources online. The NCCN or the National Comprehensive Cancer Network has a guide for not just the treatment but also the diagnosis and initial testing that is helpful for CLL. And there’s a guide for physicians and other oncology team members. And then there’s also a patient-specific guide, and many of these markers are included in that guide and are helpful information that can be brought to the office and also can be helpful supporting information if there’s a concern about insurance coverage.

Another way to advocate would be, in addition to having the resources at hand, is asking what the approval might be for the testing in terms of insurance. And there might be supplemental information that your team or the patient, or their caregivers themselves can provide from these resources that’ll make sure that the testing is covered for patients.

Essential Lab Tests for CLL Patients

Essential Lab Tests for CLL Patients from Patient Empowerment Network on Vimeo

See More From The Path to CLL Empowerment

Dr. Danielle Brander provides an overview of essential lab testing for chronic lymphocytic leukemia (CLL) patients and discusses which tests should be repeated over time.

Dr. Danielle Brander is Director of the CLL and Lymphoma Clinical Research Program at Duke Cancer Institute. Learn more about Dr. Brander here.

Related Resources

CLL Genetic Tests: How Do Results Impact Treatment and Care?

Personalized Medicine

What is Personalized Medicine?

How Can Patients Advocate for Genetic Testing?

How Can Patients Advocate for Genetic Testing?

 


Transcript:

Dr. Brander:               

So, there are additional laboratory tests besides the genomic or the prognostic markers that patients should have at the time of diagnosis. One that all patients have is a test called the flow cytometry, and that is done often for CLL patients on the peripheral blood. It may also be done on the lymph node or the bone marrow. And this is a profile of the surface of the cells that help your pathologist and your oncologist to confirm that this looks like CLL.

So most patients when they’re told of the diagnosis will have this either from the blood or it’s found on the lymph node. Notably, it’s not required in all patients, and most patients, in fact, to have a bone marrow biopsy at the time of diagnosis unless there’s a concern about other blood counts being low, and it’s not clear why that is going on.

Most of the other tests besides the prognostic genomic genetic markers that we talked about such as FISH, or IGHV, or TP53 are routine tests. So patients will have a repeat blood count, and this should be a blood count with a differential of the white blood count. CLL is a problem of a type of white cells called lymphocytes. So on the differential of the types of white cells you’ll see the lymphocytes are usually marked clearly elevated. But the differential also makes sure that there’s no low other white blood cells such as neutrophils, which are important in fighting bacterial infection.

It’s also a good idea to have at the time – and most patients will – a baseline chemistry, which include the kidney and the liver function. Though definitely not common, some patients can have involvement of CLL of the liver or kidneys.

This is pretty rare, especially around the time of diagnosis. It’s helpful to have those baseline tests. It’s also helpful because the median age of diagnosis of CLL is usually the early 70s, and so a repeat of the baseline kidney and liver function might find other chronic health problems that are important to know moving forward.

Some of the other tests, baseline labs, are more patient specific, and might need follow-up. For example, if the blood count revealed anemia, which is a low hemoglobin or hematocrit, the cells that carry oxygen, your treating team might want to order additional tests for anemia and make sure that the anemia isn’t due to something totally unrelated to the CLL such as iron deficiency or B12 deficiency, etc. So, there might be additional lab tests depending on the additional screening tests that are obtained at that time.

One other test that I’ll – or two other tests that I’ll mention at diagnosis, 1.) Is immunoglobulins, mostly for patients that have had a problem with recurrent infections because patients can have low antibody levels associated with CLL, even if it’s not been treated. So, your team – if recurrent infections have been a problem – may check for those antibody levels, those immunoglobulin levels. A second test that can be helpful at baseline is a test called SPEP or serum protein electrophoresis, which looks for extra proteins in the blood. And again, this can be seen with CLL and other lymphomas, and especially depending on patient’s symptoms, your physician, and treating team might want to obtain those labs.

Again, there are good resources online including the NCCN, CLL and leukemia patient-specific sites that might give a better outline beyond what we can cover today of tests that might be helpful in your specific case.

There are labs and tests in CLL that are repeated over time. Two of the common ones obtained at baseline, the complete blood count and the chemistry, will usually be repeated at every visit after diagnosis for patients not being treated at the time of diagnosis. They’re part of the monitoring, so every three or four months after you’re diagnosed when you see your oncologist and you have an exam, your history of how you’ve been doing, and labs taken, the white count and the chemistries are all to be followed with time.

At the time of treatment, there’s often additional tests that might be done depending on the type of treatment you’re receiving to make sure you don’t have a specific risk for recurrent reactivation of infections, for example. So the testing might change at the time of treatment. And specific to the prognostic biomarkers, the genomic or genetic testing of the CLL that we mentioned, some of them are repeated with time and some aren’t. The FISH, which is obtained at the time of diagnosis is recommended to be repeated. If patients have treatment, the CLL goes into response, and then relapses because the FISH testing can change with time.

The IGHV mutation status, however, as long as it was felt to be an adequate appropriate sample, is a characteristic of the leukemia that doesn’t change with time and would not be repeated. Similar to FISH, it’s a good idea to test the TP53 at the – not always at the time of diagnosis, but before treatment to make sure there’s not TP53 mutation.

But then similar to FISH, if the CLL goes into response and relapses, it’s advisable to repeat the TP53 as that can change as patients have different treatment options and they both help to, as mentioned, inform the first treatment. They’re also helpful to have in mind as patients are being followed on treatments because some patients have a higher risk of the treatment to stop working, for example, if there are higher-risk genomic changes.