Tag Archive for: emotional support

The Value of Myeloma Support Groups and How to Join

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The Value of Myeloma Support Groups and How to Join from Patient Empowerment Network on Vimeo.

How might joining a support group benefit you when coping with a myeloma diagnosis? Yu Mee Song, an oncology social worker, discusses the value in peer-to-peer connection and shares tips and resources for finding a support group.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

See More From Thrive CAR T-Cell Therapy

Related Resources:

360 Myeloma Care: How Can a Social Worker Help

360 Myeloma Care | How Can a Social Worker Help?

 How Can Myeloma Patients Cope With Fatigue

How Can Myeloma Patients Cope with Fatigue?

 How to Access Myeloma Financial Resources

How to Access Myeloma Financial Resources

Transcript:

Katherine Banwell:

Yu Mee, what is the value of myeloma support groups? And how would you encourage someone to join if they’re hesitant? 

Yu Mee Song:

So, it’s – it’s – it’s not for everyone. And you may need to try more than one support group to find the one that’s a good fit for you. But it does provide a sense of belonging and the decreased feeling of isolation, like you’re going through this alone, to be in a group with others who – who kind of – who get you. And I’ve had a lot of people say, you know, it’s really , really hard to talk about this – what I’m going through – with my friends or family they just don’t get it. And it’s so good to see – and  we facilitate some groups here for newcomers to join. And as soon as they, you know, speak about something and the whole group chimes in and, yes, we know what you’re going through and give their – share their story and their experience. And it’s so inspiring and encouraging for them. 

Katherine Banwell:

Yeah. It’s incredibly valuable.  

Yu Mee Song:

They share all sorts of tips on things like side effects and – or how to – how to talk to your doctor about something if you’re uncomfortable bringing it up or, um, even asking for help about, um, you know, for counseling or more emotional support that you may be embarrassed to ask about.  

Katherine Banwell:

How would a newly diagnosed myeloma patient find out about something like a peer-group session or peer support? 

Yu Mee Song:

There may be some local. But now there are many national organizations that you can tap into. I would start, again, like, ask – speaking with your oncology social worker. But I would start with some of the national organizations like Multiple Myeloma Research Foundation, International Myeloma Foundation, The Leukemia & Lymphoma Society, platforms like this the Patient Empowerment Network, or HealthTree.  

So, if you start with any of the big myeloma organizations, they can help guide you. There are patient navigators that can kind of guide to your – provide guidance to what you’re looking for, whether it’s peer-to-peer support, support group, or other resources.  

Advice for Myeloma Patients Undergoing CAR T-Cell Therapy

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Advice for Myeloma Patients Undergoing CAR T-Cell Therapy from Patient Empowerment Network on Vimeo.

How can patients undergoing CAR T-cell therapy be prepared? Yu Mee Song, an oncology social worker, shares three key pieces of advice for patients and care partners getting ready for CAR T-cell therapy.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

See More From Thrive CAR T-Cell Therapy

Related Resources:

Considering CAR T-Cell Therapy for Myeloma_ Key Questions to Ask Your Doctor

Considering CAR T-Cell Therapy For Myeloma? Key Questions to Ask Your Doctor.

 The Value of Myeloma Support Groups and How to Join

The Value of Myeloma Support Groups and How to Join

 How to Access Myeloma Financial Resources

How to Access Myeloma Financial Resources

Transcript:

Katherine Banwell:

For patients who are considering CAR T-cell therapy, what three key pieces of advice would you have for them?  

Yu Mee Song:

I think it’s really important to have someone accompany you to maybe the initial consultation.  

Or if they can’t physically be with you to have them available by phone or to listen in on a conference call because there’s so much information that’s provided. It’s – it’s a multi-step, complicated process, so it’s good to have a – another set of ears helping you to stay organized, take notes maybe, keep a calendar.  

Another thing is to plan ahead. Plan for time away from work. You may need to apply for FMLA. If you are a caregiver of young children or older parents, make arrangements for that. Especially if you live a distance from the treatment center, you may need to stay  close to the hospital for a couple of weeks after your discharge for your CAR T-cell infusion.  

Katherine Banwell:

Yeah.  

Yu Mee Song:

And then I would say another tip is to stay connected to home, so there are many online forums that you can use to – for – for your friends and family to provide support in that way and for you to share information. And maybe bring pictures or something cozy from home to remind you of home because you will be – be away for some time.  

360 Myeloma Care | How Can a Social Worker Help?

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360 Myeloma Care | How Can a Social Worker Help? from Patient Empowerment Network on Vimeo.

When coping with a myeloma diagnosis, how can a social worker support you in your care? Yu Mee Song provides an overview of the role of a social worker in myeloma care and discusses the importance of speaking up about emotional issues and beyond.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

See More From Thrive CAR T-Cell Therapy

Related Resources:

How Can a Social Worker Help CAR T-Cell Therapy Care Partners

How Can A Social Worker Help CAR T-Cell Therapy Care Partners?

 The Value of Myeloma Support Groups and How to Join

The Value of Myeloma Support Groups and How to Join

 How to Access Myeloma Financial Resources

How to Access Myeloma Financial Resources

Transcript:

Yu Mee Song:

My name is Yu Mee Song. I am, a social work program coordinator in the Multiple Myeloma Program at Mount Sinai Hospital.  

Katherine Banwell:

Excellent.  

Yu Mee Song:

Thank you for having me.  

Katherine Banwell:

Thank you for joining us. Can you tell us more about the role of a social worker as it relates to myeloma care?  

Yu Mee Song:

First of all, I feel very, very fortunate to be working in the myeloma program amongst world-renowned myeloma specialists with a team of nurse practitioners, nurses, transplant and CAR T coordinators, patient navigators.  

And our social work team is a team of five. And we can receive referrals from any of these team members at any point in a patient’s journey, from the moment of diagnosis throughout their treatment trajectory in both the inpatient and the outpatient settings for emotional needs and support to practical needs. 

Katherine Banwell:

Yu Mee, when a myeloma patient comes to see you for the first time, what are some common concerns they might be having? 

Yu Mee Song:

That really depends on the – on the patient and – and where they are in their life situation when they’re diagnosed. You know, if they’re working, they may have considerations about reducing work or not working or not being able to. A lot of practical concerns, maybe the first issue that they have to deal with such as transportation and getting to and from the cancer center now three times a week, or navigating the healthcare system for the first time in their life, and insurance or just coping with the fact that you’re now dealing with the diagnosis of myeloma and what does that mean and how are you adjusting to this? So, it really varies.  

Katherine Banwell:

If patients are facing emotional issues, why is important for them to speak about it? And – and what support is available for them? 

Yu Mee Song:

That’s – that’s a great question that I always like to stress the importance of to the patients and also the caregivers because they’re usually the ones that first notice any changes, maybe in their mood or the emotional state.  

If you’re holding things in, you’re, you know, feeling like you’re alone in this fight or your fears of what might happen, that can increase your anxiety, it might lead to depression.  

So, it’s really important to speak about it, ask your care team about it. It may be as simple as, you know, that’s a side effect of a medication that you’re on, and maybe we can reduce the dose or maybe we can tell you to take it at a different time of day. 

And that’s so helpful to know that.  

There may be help for you. You may be referred to a mental health professional, support groups, and would also improve your – your relationships within your family because obviously your emotional state it’s – it, you know, myeloma is just not impacting you but all of the loved – people around you.  

Katherine Banwell:

That leads us into the next question. Some patients don’t have a partner to help them go through this – this journey with their myeloma. So, do you have any suggestions for how myeloma patients can find support and where? 

Yu Mee Song:

I would say, first start with asking your care team or ask – speaking with an oncology social worker. Support doesn’t necessarily mean your – your partner. It can be in the form of support groups that are either in-person, there are many groups online.  

It could be a peer – one-on-one peer support. Someone who’s gone through what you’ve gone through.   

How Are Common Breast Cancer Concerns Addressed?

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How Are Common Breast Cancer Concerns Addressed? from Patient Empowerment Network on Vimeo.

How can common breast cancer concerns be addressed? Expert Dr. Bhuvaneswari Ramaswamy explains issues that can arise during a patient’s breast cancer journey and discusses how they can be managed.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about this expert here.

See More from Thrive Breast Cancer

Related Resources:

Thriving With Breast Cancer Tools for Navigating Care and Treatment

 Why Should Breast Cancer Patients Feel Empowered to Speak Up About Their Care?

 What Role Do Breast Cancer Patients Play in Care and Treatment Decisions?

Transcript:

Katherine:

When discussing cancer treatments with a patient, they have worries, obviously. What are some common concerns that patients typically have, and how do you counsel them?

Dr. Ramaswamy:          

I think the most common concern that they have is that their whole life has changed now. And that they’re going – this cancer is going to come back and when it comes back, they’re going to die. So, I mean, the death and the fear of recurrence is probably the most common concern. And I think the second common concern is the treatment-related toxicities that we talked about a little bit, particularly the hair loss or other things that’s going to change their lives forever after that. So, I think what is important to discuss to me, the most important thing to discuss is to clearly state to the patient there’s chances of cure. Meaning to say, your probability of being cured of this cancer, if you do this, this, and this is this high.

But there is, of course, a chance of 10 percent, 15 percent, 20 percent, 25 percent depending on the subtype of cancer they have  and the staging and their age and all of that, of this coming back. If you, even if you do the treatments, but if you don’t do the treatments, the chances of coming back is this much higher, okay?

So, I think it’s important for them to know it is still very difficult because it doesn’t really reflect what is going to happen to them. It reflects what’s going to happen to 100 people with similar cancer. So, again, that is important to explain, but what you can explain to them is if you pull out 100 out of the 100 pellets in a box if you pull out 90 pellets, they’re all going to be cured. There’s only going to be 10 pellets   that could have a recurrence. So, some ways to make them understand statistics. Not everybody comes with a good understanding of all of this. So, I think that’s important. And I think that also it’s important to talk about the treatments and how it effects – and how long it can affect them.

That they can get back and the goal of every provider is to really, the way I explain to them, you’re going to take a diversion in your life, but my goal is the diversion meets the main traffic at some point. That is the goal. And then you just go on smooth sailing. Of course, nobody knows the future, anything could happen, but we are here. And I think  the other thing that’s important, yes, we could have metastatic disease, but you are not going to, I mean,  I’m not saying nobody would, but most people with metastatic breast cancer live for several years.

And there are several treatments and new treatments  coming like I said, every year. So, having that positive approach, even if it comes back is so important for them. So, I think those are the ways; educating, answering their question, providing emotional support, and if they need counseling, addressing that. I think those are very important.

MPN Patient Shares Survivorship Tips, Recognizing Social Media Toxicity

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MPN Patient Shares Survivorship Tips, Recognizing Social Media Toxicity from Patient Empowerment Network on Vimeo.

 Myeloproliferative neoplasm (MPN) patient Julia Olff has experienced the positive and negative aspects of online information and social media in her search for support. Watch as she shares her support journey with what she found helpful and what became toxic in her efforts to gain MPN information and emotional support.

See More From the MPN TelemEDucation Resource Center

Related Resource:

Transcript:

Julia Olff:

So, I think social media has many advantages, especially when you have a rarer illness like myelofibrosis. I was diagnosed with myelofibrosis in 2008, and there really was not a lot of good information yet about the illness online, and I had not met anyone who had my myelofibrosis, so I really appreciated being able to go to places like Facebook in their earlier days, with my illness, to find organizations to find other people with the illness, I think learning from other people in terms of their strategies for coping with her illness, tips for dealing with side effects, and other people can answer questions about the physicians and nurses just can’t because they don’t experience it directly, how something feels sort of setting your expectations for a treatment can be really helpful, and I think that’s where social media really shines, is creating community and connecting it to others and learning from peers. The downsides though, I think, are the amount of opinion, unfounded opinion, not sourced opinion that exists that I saw on social media, and then the angry vitriol or kind of disagreement that I found really harmful to my mental health.

I’m always trying to balance how I feel with my mindset, and there are times that that’s easier to do, and times that that’s harder to do, so when I’ve been particularly unwell or just had a hospitalization, I feel like I have…I’m more vulnerable, I have less of a threshold for negativity and angry commentary, and that you can find that on social media, unfortunately, and then, of course, there’s… what I find troubling or not helpful are the opinions of other people who relay people who don’t necessarily have the depth of credible information about a treatment study, what’s right or wrong as it relates to the latest in myelofibrosis treatment, and treatment advances. So it’s helpful to hear about what it was like to have a stem cell transplant from someone with myelofibrosis, but yet I can’t rely on an individual for credible scientific medically sound information. So I think for me, I actually deleted my Facebook account in 2020, but I did keep my Twitter account because there I follow physicians’ epidemiologists, and of course, MPN organizations so that I can know about upcoming webinars or patient events, or new treatments. So that’s been really helpful.