Tips for Coping With the Emotional Complexities of Multiple Myeloma

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Topics include: Living Well , Patient Stories and Understanding

Is it normal to be emotional about my multiple myeloma? Meet three multiple myeloma patients, Jane, Linnea and Roger, who share how they deal with the emotional complexities of being diagnosed with cancer. Listen as these three survivors, with Patient Power online host, Tamara Lobban-Jones, discuss coping mechanisms like online forums, support groups and exercise as means of dealing with fear, anxiety and worry.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Tamara Lobban-Jones:

Hello and welcome to this Myeloma Patient Café. My name is Tamara Lobban-Jones, thanks for joining us. Here you’ll hear from three myeloma patients on how they shared their diagnosis, how they coped, and they’ll also share strategies they used to improve communication with their healthcare team throughout their journey.

First, let’s meet Linnea. Linnea, tell us a little about yourself.

Linnea: 

Hi, my name is Linnea Johansson. I live in Canyon City, Colorado, which is Southern Colorado.

I’m 63 years old. I was diagnosed last year, May 15th, 2015. And I presented with some bone pain, basically back and ribs, and not able to keep my food down. My husband took me to the hospital. They found my calcium levels very high, admitted me, and I was in the hospital from the 11th to the 15th. And then they gave me the diagnosis and transferred me to another

I had acute kidney failure at the time. I was then told I had end stage. I don’t believe it. I believe that once myeloma is done and the numbers are down where they need to be that the kidneys will recover. In fact, my kappas are now at 108, and my lambdas are within reason. And I’m in very good partial remission. I had negative bone results in February.

Tamara Lobban-Jones:

Thank you, Linnea. Despite it all, it’s good to hear you have such a great attitude. So let’s talk to Roger. Roger, can you tell us little bit about yourself?

Roger:

I’m Roger. I live in the Tampa Bay area of Florida. And in December of 2014, I was diagnosed with multiple myeloma. I,went to MD Anderson for treatment, went through four sessions of chemo, since a transplant, now on a maintenance program. And I’m in what they call complete response, which in normal terms is considered remission.

Tamara Lobban-Jones:   

Thanks for that, Roger. Let’s meet Jane. Jane, can you tell us about yourself?

Jane:

Yes, my name is Jane Hedinger. I’m from Edmonton, Alberta. I was diagnosed in, uh, July of 2009. So that’s seven years ago, and I have had all the treatments, all the different drugs. And I’ve had two stem cell transplants, the last one being in October. And I’m now in remission. 

Tamara Lobban-Jones:

Such good news. So, Jane, talk to us a little bit about how you felt when you first got this diagnosis.

Jane:

It was actually very—I don’t know because I presented like Linnea in that I was hypercalcemic  because the blood was so thick that they couldn’t even get a needle of blood, and I had back pain  really badly for over a year before I was diagnosed. So when I was diagnosed I was very, very surprised because I didn’t feel that anything was wrong other than my back was very sore, and so I was very disappointed. They didn’t give me a good diagnosis then. They thought I was going to die, and my family was very, very upset. However, I came through, and that seems like I come through many things over seven years.              

And my doctor calls me his miracle, and so I’m very happy and like Linnea. I’m not worried about dying, you know? Like it’s just not something I think about, and my family is extremely supportive. I have an incredible caregiver in my husband, and so I’m a happy person. 

Tamara Lobban-Jones:

Linnea, how about you, how did feel and who was your support?

Linnea: 

My husband is my caregiver. He is my best friend. He has seen me through this. If it were not for him, I probably wouldn’t have such a good attitude. This is the reason I’m here is because I want more life with him.

My diagnosis, of course, at first was bad news. But I chose not to share it right away, because I was still in a state of unbelief. I don’t believe this. It can’t be possibly this bad. 

Tamara Lobban-Jones:   

Linnea, so you decided to keep the news to yourself for a while. The truth is, everyone has their own way of sharing such news.  It’s really your decision. Roger, how did you feel when you were first diagnosed?

Roger:  

Well, I found out that I had multiple myelomas after breaking a few ribs and not really having a good explanation. I didn’t fall down skiing and didn’t get in any fights or anything. A sneeze broke a couple ribs. I rolled over on the floor and broke a rib. And then I went into the hospital, because I was having some terrible pains in my stomach. And they did a CAT scan and found that I had lesions on my ribs and spine.                

And that’s when the hematologist came in and said, “We think you have multiple myeloma.” And like the other two patients, I have a wonderful caregiver that’s my wife. She has studied myeloma more than anybody that I know. And when she goes in to see the doctors and gets the blood reports, they’ve always got little things circled ahead of time with answers for her. She stays on top of the latest treatment procedures, and because of the research she’s done we’re in a clinical trial for a maintenance drug now.

Tamara Lobban-Jones:   

So for each of you, the diagnosis was no doubt unsettling, but it sounds like each of you have great care partners. Were there other family members that you each felt you were able to talk to, or were you fearful? Jane?

Jane:

No, not at all. I talked about this cancer right from the beginning in that it helps me to tell everybody what goes on. Most of my friends are incredibly supportive and know everything there is to know about multiple myeloma. We also have a support society in Edmonton. It’s called Myeloma Alberta Support Society, and that’s a once-a-month meeting, which is incredibly supportive, because you get to talk to other people that have the same disease.

Linnea: 

I belong to a group here in Canyon City called Hope Sisters. And it’s a group of women who had various types of cancers, and some of them are older than me. And some of them have had worse situations. No one else has myeloma, but they’re all wonderful people to bounce things off of.

I’m also a member of several forums in the Facebook community, and so I communicate this way with a lot of people that way. I’ve talked to my family, and my family is usually supportive. But we’re all scattered, so just having my husband here has really been a blessing 

Tamara Lobban-Jones:   

Roger?

Roger:  

Unfortunately, I’m not familiar with any associations or groups in the Tampa Bay area, and that might be because I’ve put my hands totally in MD Anderson in Houston. So whenever I’d have the monthly treatments, I’d go back to MD Anderson in Houston to take care of those things. But I’m going to look and see if there’s any groups that get together because sometimes it helps to talk to other people who have similar problems.            

I know I’m going through this clinical trial now using lenalidomide (Revlimid), elotuzumab (Empliciti) and dexamethasone (Decadron). And sometimes I have little pains, and I wonder what they’re about. And I’ll wait until I get back to MD Anderson to talk to the nurse practitioner that works with my oncologist to tell her about it. She says, “Oh, yeah, that’s one of those typical side effects.” So when you know it’s a side effect that comes with the drug, you kind of accept it that it’s the unknown that you’re so fearful of. And I think being in a support group locally would help to talk about those things as well. 

Jane:

We actually have speakers that come in on a monthly basis, and it’s usually somebody with regards to peripheral neuropathy, for example, or the side effects of different drugs.                 

And, you know, with multiple myeloma, it’s just an individual disease that everybody is different, you know. For example, Linnea has the kidney problem. I’m very fortunate in that my kidneys are fine, right? However, if I would have presented even later, well, I wouldn’t have lived until later, but those are the things that we talk about. And it helps incredibly to either listen to the speaker or to talk to the other patients as well.

Tamara Lobban-Jones:

Linnea, do you agree with that?

Linnea: 

I agree. I’ve gotten a lot of good support from these groups. 

Tamara Lobban-Jones:

So there are some themes among you: feeling anxious and worried, and Roger just talked about feeling a little ache or pain and worried about what that is. Jane, have you felt some anxiety or depression at all, or have you had other kinds of mechanisms in place to deal?

Jane:

I have never had any anxiety. When you go to the doctor, they give you the form that you fill out, and there [are] all those things there at the end, you know, what might be bothering you. And I’ve never had any of that. I’ve never, fortunately, had any depression or even worried about the treatments other than like Roger says. You have all these different little side effects that you have no idea what’s the problem, you know, if it’s the drug or if it’s the disease or what it might be. But you find out, so those are the kinds of things that are important. 

Linnea: 

I agree. I agree. I’ve had some anxiety. I’ve had a temptation to be depressed, but I counteract it by remaining active. We started a new business. We got a puppy. I walk a lot. I ride my bicycle. I stay as active as I possibly can because I figure with a good attitude and staying active, I’m still involved. I’m still alive. I’m walking and talking. Hey, you know, so it helps. All of those things help.

Jane:

Yeah, that is for sure, Linnea, that exercise is absolutely crucial for people that have a disease, I think. So I golf, which the doctor says I shouldn’t do because my back is so bad. However, I just go, and I love it. So I can’t curl anymore. I used to curl a lot, and I was a very good curler. Now I don’t know if the rest of you know what that is, but it’s a wonderful sport as well. And I can’t do that anymore, because my husband is afraid I’ll fall down and break something. But I could do that by being hit by a bus tomorrow, for example. 

Linnea: 

Hey, we still ride motorcycles. I’d rather fall off the motorcycle than die of myeloma.

Jane:      

Oh, well, there you go. Yeah. And I’m like you. I walk. I walk two or three times a week, and I walk with a friend that looks after dogs. And I don’t like dogs, but I go to the dog park with her and walk around. So that’s what’s really important.

Linnea:

Mm-hmmm it is.

Tamara Lobban-Jones:

Roger, did you have any bouts with depression or anxiety along your journey?

Roger:  

I’ve never really been depressed about having myeloma. I guess I’ve left that to my wife, and a friend that I see every so often when I go to Houston at MD Anderson says it’s remarkable like I kind of treat it like it was just another bump in the road. And like Jane, I started playing golf about six years ago, and I really enjoy the

And I’ve retired living in a community where there are plenty of golf courses, but I had to stop for a while because the broken ribs. The doctor said he didn’t want me twisting my back. So a few weeks ago, I went back, talked to the orthopedic surgeon. He looked at the bone scans that I had and said, “You can start swinging the clubs again.” So I’m back to playing golf and enjoying it.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on July 21, 2016