Tag Archive for: resources

MPNs and Pregnancy: Why Close Monitoring Is Important

MPNs and Pregnancy: Why Close Monitoring Is Important  from Patient Empowerment Network on Vimeo.

What complications can arise from an MPN during pregnancy? Dr. Joseph Scandura, from Weill Cornell Medicine, explains how pregnant women are monitored during pregnancy and in the postpartum period. 

Dr. Joseph Scandura is an Associate Professor of Medicine and Scientific Director of the Silver MPN Center at Weill Cornell Medicine. Learn more about Dr. Scandura.

 

Related Programs:

 
Finding an MPN Treatment Approach That Is Right for You

Finding an MPN Treatment Approach That Is Right for You

Thriving With an MPN | Tips for Managing Worry and Anxiety

Thriving With an MPN | Tips for Managing Worry and Anxiety

How Should You Participate in MPN Care and Treatment Decisions?

How Should You Participate in MPN Care and Treatment Decisions?


Transcript:

Katherine Banwell:

“What complications can arise from an MPN during pregnancy?” 

Dr. Scandura:

Well, look, pregnancy – here you have two things, one of them common and complicated and the other one uncommon and complicated. So, common is pregnancy, but every pregnancy is different. And there’s a lot of changes going on in the body, and there’s certain risks that can go along with that as well. So, clotting risks sometimes can be increased in pregnancy. And then you have an MPN, where you have a clotting risk on top of that. The pregnancy really changes what kinds of medications we can think about using. And so, there are certain medications that we use comfortably in patients that would be an absolutely forbidden medication in a pregnant woman.  

And so, it depends a little bit on what’s going on with the patient. But, if they have a history of clotting, then certainly, we would think about wanting to control the blood counts. It depends a little bit on what the disease is how we would do that. Interferons are commonly used in pregnancy, and they are safe in pregnancy and can improve the outcomes in some patients with pregnancy.  

But short of that, in patients, for instance, who are very thrombotic risk, sometimes we have to sort of balance the risk of having a clot and something that can interfere with the pregnancy and the risk of bleeding. So, it’s not uncommon that people are on blood thinners during pregnancy at some point, but it really depends on the individual patient. What we do here is we keep very close contact with the patients.  

And all of our patients are seen by the high-risk OB/GYN. So, it’s not the general obstetrics people who are monitoring the patient, so they’re much more closely monitored for complications of pregnancy. And we are seeing them more frequently during pregnancy to help, from the MPN side, to try to optimize and minimize the risks of clot. And that doesn’t end as soon as the baby’s out. If breastfeeding, their clotting risk is not normalized after pregnancy, as soon as the baby comes out. And so, you know, there’s an adjustment for several months afterwards where we’re still kind  of thinking about this person a little bit differently than we would if they were not or had not been recently pregnant. 

How to Access Financial Support for MPN Patients

How to Access Financial Support for MPN Patients  from Patient Empowerment Network on Vimeo.

Is there financial help for patients living with ET, PV, and myelofibrosis? MPN specialist Dr. Joseph Scandura shares advice and resources to ease the financial burden of care and treatment. 

Dr. Joseph Scandura is Associate Professor of Medicine and Scientific Director of the Silver MPN Center at Weill Cornell Medicine. Learn more about Dr. Scandura, here.

 

Related Programs:

 
Finding an MPN Treatment Approach That Is Right for You

Finding an MPN Treatment Approach That Is Right for You

Thriving With an MPN | Tips for Managing Worry and Anxiety

Thriving With an MPN | Tips for Managing Worry and Anxiety

How Should You Participate in MPN Care and Treatment Decisions?

How Should You Participate in MPN Care and Treatment Decisions


Transcript:

Katherine:

We’d be remiss if we didn’t bring up financial concerns, treatment and regular appointments can really become quite expensive. Understanding that everyone’s situation is different, of course, where can patients turn if they need resources for financial support? 

Dr. Scandura:

Yeah. It depends on what the issue is. So, one of the biggest areas that I found this can interfere with care is when we have copays that are really not reasonable and not affordable. And so, how do we fix that? How do we get access to an agent that might be beneficial for a patient but that – you know, and the insurance has approved it, but they’ve approved it with such a high copay that it’s just not an option anymore.  

And so, there are foundations. The PAN Foundation, we often will reach out to for copay assistance. And, actually, many companies have copay assistance programs for their individual drugs. And so, we have some of our nurses who are quite good at navigating these different agencies, and some of them are kind of drug-specific.  

And because we see a lot of patients with MPNs and the number of drugs is not that great, we’re pretty tapped into what are the options for copay assistance that might be helpful. And it often works. It doesn’t always work. I had a patient I saw pretty routinely, and I kind of like my certain group of labs that kind of make me feel like I have a good sense of what’s going on. But he was getting killed with the lab costs. And he mentioned this to me, and then I have to do what I tell my – I have three teenage daughters, right? And, when they were littler – smaller, younger, we spent a lot of time distinguishing needs from wants, right?  

So, this was one of those instances. What laboratory do I need to make sure that this patient is safe? What do I want because it makes me feel like I have a better idea of what’s going on? And maybe I can back off on those wants if I’m seeing the patient pretty frequently, which I happen to be at that time. And so, some of that is a conversation.   

And it depends on the specifics of the insurance and a little bit of back and forth and knowing how to kind of minimize that financial burden when that’s starting to compromise care. 

How Can Prostate Cancer Patients Access Clinical Trials?

How Can Prostate Cancer Patients Access Clinical Trials? from Patient Empowerment Network on Vimeo.

Dr. Andrew Armstrong shares trusted resources for accessing information about prostate cancer clinical trials and reviews common barriers to participation.

Dr. Andrew J. Armstrong is a medical oncologist and director of clinical research at the Duke Cancer Institute’s Center for Prostate and Urologic Cancers. For more information on Dr. Armstrong here.

See More From Prostate Clinical Trials 201

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Should Prostate Cancer Patients Consider a Treatment in Clinical Trials?

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Why Should Prostate Cancer Patients Be Empowered?

Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial

Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial


Transcript:

Katherine Banwell:

Yes, yes. How can patients find out about a trial that might be right for them? 

Dr. Armstrong:

There’s several sources. One is through their doctor. You know, their doctor can be their navigator. They will be connected either within a cancer center or be connected to a cancer center that’s in their region. So, getting a referral to a cancer center can be that open door to hearing what trials a big cancer center might offer. 

If patients are willing to travel longer distances, there are websites like clinicaltrials.gov where patients can search and find a trial, find a coordinator, find a principal investigator or doctor, contact them, and then either drive or fly to that site to access that trial. Not every patient has that means. 

But that’s certainly a resource that many patients and their family members can use to seek out those trials. And I certainly have patients that have found me in that way. 

But it’s probably more common for patients to come to you through a referral from their doctor because many sites in the community don’t have access to those clinical trials, but they know who does.  

Katherine Banwell:

What are some common barriers to accessing clinical trials? 

Dr. Armstrong:

The most important one is probably transportation. Some trials are close by, and some trials are very far away, and resources can be a major barrier. The cost of transportation, of having to be near a trial site, can be a major barrier. We wish we had all of the trials everywhere, but that’s not possible. Some trials are available at Duke, but are not available for example in Baltimore or Boston or California, and vice versa.  

Each academic institution may have their own trials. There are going to be some big trials that are available everywhere. These are like global Phase III studies. And really just talking to the physician, maybe getting a second opinion about which trial may be right for you in a certain circumstance is really part of the shared decision-making process. 

So, travel, socioeconomic status, cost concerns, those are barriers. But most clinical trials will pay for the experimental drugs. They will not charge you more money to participate in the study. And most insurance companies will pay for your participation in that trial, so that should not be a major barrier, but transportation can be. So, sometimes patients will find trials near a loved one or a family member so they can stay with them during the trial participation. 

How Can Clinical Trials Be Accessed?

How Can Clinical Trials Be Accessed?  from Patient Empowerment Network on Vimeo.

Clinical researcher Dr. Seth Pollack and patient advocate Sujata Dutta explain the benefits of participating in a clinical trial. They review important questions to ask your doctor and share advice for finding a trial.

Dr. Seth Pollack is Medical Director of the Sarcoma Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and is the Steven T. Rosen, MD, Professor of Cancer Biology and associate professor of Medicine in the Division of Hematology and Oncology at the Feinberg School of Medicine. Learn more about Dr. Pollack, here.

Sujuta Dutta is a myeloma survivor and empowered patient advocate, and serves a Patient Empowerment Network (PEN) board member. Learn more about Sujuta, here.

See More from Clinical Trials 101

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What Is a Clinical Trial and What Are the Phases? 

Are Clinical Trials Safe?

A Patient Shares Her Clinical Trial Experience


Transcript:

Katherine Banwell:    

Sujata, there’s clearly a lot of hesitation and misconceptions out there. What would you say to someone who’s considering a trial but is hesitant?

Sujata Dutta:  

I would say speak to your provider, speak to your doctor, and get all these myths kind of busted to say, “it’s going to be expensive” or whatever those questions are. And then, through that process also try and understand what is it that the study is trying to achieve? How is that going to be beneficial to you? So, in my instance, it wasn’t the last line of defense, it was just one of the processes or combos that would help me. And so, that was important for me to understand and then a little bit of education as well. So, I was asking, I have questions on my phone every time I meet my provider, and I did the same thing. So, I think that one of the good practices is keep your note of your questions and have those questions ready. And no question is silly, all questions are important. So, ask as many questions as you can and use that opportunity to educate yourself about it.

And maybe you realize, “No. I don’t think it’s working for me” or “I don’t think this trial is good for me.” But it’s good, important, to have that conversation with your provider, that’s what I would recommend highly.

Katherine Banwell:    

Excellent. Thank you, Dr. Pollack, if someone is interested in participating, how can they find out about what trials are even available for them?

Dr. Seth Pollack:       

Yeah. I mean, the best thing to do is to start just by asking your doctor if they know about any clinical trials. And a lot of the times the clinical trials are run at the big medical centers that may be closer to you, so you could ask your doctor if there’s any clinical trials at the big medical center even. Or I always think it’s good to get a second opinion, you could go get a second opinion at the big medical center that’s close to you and ask them what clinical trials are at your center.

And sometimes they’ll be conscious about some of the clinical trials that may be even run around the country. And you can ask about that as well.

Katherine Banwell:    

Would specialists have more information about clinical trials than say a general practitioner?

Dr. Seth Pollack:       

So, I specialize in rare cancers, so a lot of the times the general practitioners they’ve got my cell phone number, and they text me, and they say, “Hey, do you have a clinical trial going on right now?” And that happens all the time, but yeah, the specialists will usually because frankly there’s so much to know. And the general practitioners really have a lot to keep track of with all the different types of diseases that are out there. Whereas at the big centers, the specialists, part of their job is really to keep their tabs on what’s going on with the clinical trials.

So, they’re good people to ask, either your local doctor could reach out to them, or you could go get a second opinion and ask.

Sujata Dutta:  

There’s also a lot of information, Katherine, on sites such as LLS, or PEN, or American Cancer Society that they also publish a lot of information. Of course, I would recommend once you have that information then vet it by your specialist, or whatever. But if you’re interested in knowing more about clinical trials in general and some that would work for you, then those are also some places to get information from.

Katherine Banwell:    

That’s great information. Thank you, I was going to ask you about that Sujata. Well, before we end the program, Dr. Pollack, I’d like to get your final thoughts. What message do you want to leave the audience with related to clinical trial participation?

Dr. Seth Pollack:       

Yeah. I think clinical trials it can be a very rewarding thing for a lot of patients to do, I think patients really like learning about the new treatments. And I think a lot of patients really like being a part of pushing the therapies forward in addition to feeling like sometimes they’re getting a little bit of an extra layer of scrutiny, because there’s a whole extra team of research coordinators that are going through everything.

And getting access to something that isn’t available yet to the general population. So, I think there’s a whole host of advantages of going on clinical trials, but you need to figure out whether or not a clinical trial is right for you.

Katherine Banwell:    

Yeah. Sujata, what would you like to add?

Sujata Dutta:  

Absolutely, I second everything that Dr. Pollack is saying. And in my personal experience I wouldn’t say everything is hunky-dory, everything is fine. I’m going through treatment, I have chemo every four weeks, I started with chemo every week. That’s when the logistics pace was really difficult because going to Mayo every week was not easy. But anyways, as the trial progress itself every four weeks, but as I said the benefits are huge because I have labs every four weeks. I meet my provider every four weeks.

So, we go through the labs and anything amiss, I’ve had some changes to my dosage because I’ve had some changes in the labs. And so, there’s a lot of scrutiny which I like, but the flip side, for maybe some maybe like, “I have to have chemo every four weeks. Do I want to do that or not?” Or whatever. In my case, I knew it, and I signed up for it, and I’m committed to doing that for two years. And so, I’m fine with that. So, I would say all in all, I’d see more benefits of being in a clinical trial. One, you’re motivated to give back to the community. Two, you are being monitored and so your health is important to your provider just as it is to you. And so, I highly recommend being part of a trial if it works for you and if you’re eligible for one.

How Can Patients Access the Latest DLBCL Treatment Options?

How Can Patients Access the Latest DLBCL Treatment Options? from Patient Empowerment Network on Vimeo.

How can diffuse large B-cell lymphoma (DLBCL) patients learn more about developing research and new treatments? Dr. Justin Kline provides key advice to access the latest treatment options.

Dr. Justin Kline is the Director of the Lymphoma Program at the University of Chicago Medicine. Learn more about Dr. Kline, here.

See More From The Pro-Active DLBCL Patient Toolkit

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Which Factors Impact DLBCL Treatment Decisions?

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Transcript:

Katherine:      

With all of these treatments in development, how can patients ensure that they’re receiving the latest treatment options?

Dr. Kline:       

Yeah. It’s complicated, even for somebody who’s in the business. There are so many clinical trials going on all over the place and at various stages. I think, as I mentioned early on in our conversation, one of the best ways to make sure that you or your loved one is receiving the most advanced care is to get that second opinion, particularly at a center that does clinical trials. And it doesn’t have to be an academic center. There are many offices in the community that also run clinical trials, but I think meeting with somebody who treats DLBCL for a living at least once to talk about those options is a good idea.

The second approach is really to get engaged. And it may not be the person with lymphoma, sometimes it’s a spouse or a child, usually a grown child, but doing due diligence, getting involved with websites, Lymphoma Research Foundation, Leukemia-Lymphoma Society, where you know you’re getting good information. Folks like you guys who are involved in patient education. I think I have seen many patients who come in extraordinarily well educated about DLBCL, even before their first visit, and I do think it does make a difference in helping them decide what and where they want to get their treatment.

Katherine:      

Yeah. What resources would you recommend for patients to help them stay up to date or to learn more about their disease?

Dr. Kline:       

Sure, yeah. Again, I think as folks sort of meet with their oncologist or oncology nurse, each office or center may have their own specific recommendations. I really like, as I mentioned, the Lymphoma Research Foundation, which I think is LRF.org*, the Leukemia & Lymphoma Society, LLS.org. They not only have a website that has a lot of information on it, but they often have patient education days once or twice a year where specific lymphomas are discussed in their treatment, that’s geared toward people with lymphoma and their caregivers.

They also have, it talks about dealing with chemotherapy, the financial toxicity associated with cancer treatments, how to sort of share your diagnosis with your children and other family members, so it’s not just doctors that are barking at you all day long, but it’s other people, social workers, lawyers, nutritionists, nurses. So, those are probably my two favorite organizations, but there are many others where people can get very good and useful information about DLBCL and other lymphomas as well.

How Speaking Up Can Positively Impact Your Colon Cancer Care

How Speaking Up Can Positively Impact Your Colon Cancer Care from Patient Empowerment Network on Vimeo.

Why should you advocate for the best care for you? Dr. Smitha Krishnamurthi, a colon cancer specialist from Cleveland Clinic, provides key advice to access better care, including the value of second opinions, and why you should feel empowered to speak up.

Dr. Smitha Krishnamurthi is a gastrointestinal medical oncologist at the Cleveland Clinic. Learn more about Dr. Krishnamurthi here.

See More From The Pro-Active Colon Cancer Patient Toolkit


Related Resources:

Should Your Family Members Be Screened for Colon Cancer?


Transcript:

Katherine Banwell:

What is your advice to patients who may feel like they’re hurting feelings by seeking a specialist or even a second opinion?

Dr. Krishnamurthi:

I would advise patients to not worry about that at all. I think that any one of us diagnosed with colorectal cancer would want a second opinion, would want to make sure that we’re getting an opinion from a high-volume cancer. Working here are Cleveland Clinic, I have the luxury of focusing on treatment of gastrointestinal cancers, whereas my colleagues who are in the community are treating patients with all different types of cancers. They have to be knowledgeable in all different types of cancers.

I think that’s actually much harder. I think that if your oncologist is not a specialist, the oncologist may actually appreciate having an opinion from a specialist, which helps them as well.

I think that if the doctor is going to be offended, then that’s probably not the right doctor to see. I think it’s important to just advocate for oneself and go for it.

Katherine Banwell:

That leads to my next question. What advice do you have about self-advocacy, about speaking up for yourself as a patient?

Dr. Krishnamurthi:

I think that’s very important to feel comfortable with your treatment team, with the doctor, nurse, nurse practitioner. If you have the luxury where you have choices where you live, seek out somebody who you can really connect with. I think it’s very important for the treating team to know what the patient is going through.

We have to know how the treatment is going so that we’re dosing properly, making adjustments. We want to know what our patient’s goals are so that we’re providing the best quality care.

I think it’s helpful to bring somebody to appointments. Or if you can’t bring somebody, you’ll call them on the phone. We’re doing that a lot now. People are joining by video call or even speaker phone. Many offices will have a speakerphone. You can ask to have somebody called on your behalf. Especially with COVID and the restricted visitation. Let’s get people on the phone. Somebody else to listen for you. For the patient, I mean, and to take notes. That really helps

Least Invasive First

Dr. Winn SamsEditor’s Note: This blog was written by Winn Sams, D.C. Dr. Sams practices in Columbus, NC a small town snuggled in the foothills of the western part of the state.  A native of Charlotte, NC with a B.A. in Economics from the University of North Carolina- Chapel Hill, Dr. Sams graduated from Sherman College of Chiropractic in 2002 summa cum laude and valedictorian of her class. From her own experience where personal health directives and choices were not heard nor respected, she decided to create a site where uniqueness and diversity could be anchored in healthcare. Being a healthcare provider, she knew how important it is for the “whole” person to be not only known, but included in a plan of care. Thus, Least Invasive First was born.


Recently, my youngest daughter broke her right arm and dislocated her elbow. The ER referred her out to an orthopedist nearby. We showed up at the appointment with a lot of questions and wanting to know what our options were. The doctor entered the room, did not make eye contact with me nor my daughter’s friend, who was sitting next to me. His handshake was a mere extension of his hand to us (friend and myself), kind of like a king might do to his subjects to kiss his ring. He said he would like to order a CT scan of my daughter’s elbow and do surgery. I asked were there any other options and he said “No” and that he would be back in a few minutes. He never came back, but his nurse showed up to schedule the surgery. I was furious and let her know my dissatisfaction, clearly acknowledging that it wasn’t her fault, but we would not be coming back.

Now, you have to understand I am a Doctor of Chiropractic. I see patients every day and I would never treat anyone the way we were treated. There was no informed consent , no shared decision making in developing a treatment and no respect for who my daughter was (or us for that matter) as a unique person seeking care. EVERYONE deserves all of the above! So, we left that office and made an appointment with another Orthopedist, who was absolutely fabulous. Our experience was night and day from the first one. We felt like we were a part of creating our plan of care, throughout the whole appointment and were at peace with the planned surgery, leaving there feeling like we were in good hands.

My concern is this. When we are in pain or an emergency situation, we usually are not thinking straight. We just want someone to help us get out of pain and/or tell us what is wrong. We may accept the first Doctor that we encounter, as he/she knows more than us. As far as what a Doctor is taught in school, the knowledge of how the body works and their expertise/experience, that is true. HOWEVER,  the patient still has to be included in the whole process, otherwise, you are giving your power over to someone to do as they deem fit TO you. That is a recipe for disaster.

Data and evidence based science measure outcomes that can be repeated. That is a big help when trying to choose a plan of action, but healing and how our bodies RESPOND to said procedures or medications is not an exact science. This is where our uniqueness comes in. Some people are allergic to medications or do not need to start out with the highest dose, as their bodies may actually react unfavorably to what may be the standard practice. Some people would like to try other options first, if possible. In the best interest of all, seeing how that choice works and then moving on to more invasive choices if necessary. It is imperative that your Doctor know as much about ALL of you to make the best plan of care. But, you don’t have to back down or be ashamed of your choices if they don’t match up with your provider’s. Remember, a Doctor is only a person ( yes, just a person like you and I) who has certain training and experience in particular fields. You cannot assume that your Doctor has your best care in mind, when they don’t have a clear picture of who you are on all fronts.

So, with all of this in mind, I developed a site called Least Invasive First, www.leastinvasivefirst.org, where you can keep all of your advance health directives and info in one place, with everything digitally accessible at any time. You can upload forms and/or pictures into your profile that provide information, that in especially stressful times, you have available at the click of a button. Medications can be listed with dosage, so you can edit them as they change. You can also give your username and password information to a family member, so they have access to your information if you are unresponsive or not able to make decisions for yourself. There are a lot of creative ways that this service can be used.

Fortunately, this concept works well for the Doctor and/or hospital side too. I have interviewed many of both and all have voiced a resounding affirmation that information the patient provides would be a tremendous help. I am glad to offer a way to potentially change healthcare and it starts with you!