October 21: Interview with METAvivor's Kelly Boyd Lange

I interviewed former METAvivor president and current Secretary/Treasurer Kelly Boyd Lange via email. The following are her replies.

When were you first diagnosed with Breast Cancer?

I was first diagnosed with stage I BC in 1995. I was 32. I opted for lumpectomy/radiation, and chemo wasn't recommended (I think it would be now).

When were you diagnosed with Metastatic Breast Cancer? What were your thoughts upon hearing the metastatic diagnosis? Was your perception correct? What has changed since then?

Starting Herceptin, 2007

My first recurrence was in the lumpectomy scar 5 years out. After that I had several lumps under my arm, which were removed in two surgeries. I remember going to the pre-op evaluation for one of those  axillary dissections and seeing an oncologist's note describing me as "stage IV". The label surprised me - I was rationalizing that with involvement in the breast and under the arm I was more in line with stage II or III.

Of course, I knew it wasn't good that it kept coming back, but I didn't think of myself as metastatic since I had no involvement in lung/liver/bone/brain - or any other essential organ. That changed when it spread to my skin in early 2007. Even then I can't say I was devastated; I think the incremental progression towards mets prepared me emotionally. I'm not saying it wasn't hard, it's just that I dealt with it so gradually compared with how it happens for most people. At that point I started Herceptin, more than seven years ago now. After two treatments my skin cleared up considerably, and it is still clear today. I count my blessing every day. I know how fortunate I am that I have been so stable for so long.

How did you first learn about METAvivor?

METAvivor found me! I was fundraising for the Komen 3 Day. I was chatting with an acquaintance about the walk, it turns out she was CJ’s neighbor. As soon as CJ heard I was stage 4 she got in touch. It didn’t take long for CJ to get her hooks in me, and set me straight about the state of MBC research!

When did you get involved working with METAvivor?

I got involved right away. I stopped working in late 2006 because of progression, but I was feeling so much better on Herceptin, so I had some time and energy to give. The hard part is getting close to people and then losing them. I try to turn the grief into motivation to keep plugging away. I hope that METAvivor is making a difference.

How much progress do you think has been made for metastatic breast cancer research?

Not nearly enough! The process is painfully slow, and it breaks my heart every time we lose someone that couldn’t hold out for that next hopeful drug. But I am encouraged in some ways. It seems to me like awareness is growing, and our voices are getting louder.

What's the one thing about metastatic breast cancer that you feel the public should be more aware of?

After 2 Herceptin treatments

It’s hard to pick just one thing! I would say the public needs to realize that MBC can happen to anyone. It happens no matter how well you take of yourself, no matter how long you have been “cancer free”, no matter how good your health care team is, no matter how young you are. It just happens to 1 in 3 of us.

What was the hardest treatment you've been through to date? The easiest?

The hardest treatment by far was the Adriamycin/Cytoxan regimen that I was on in 2000. The nausea meds just didn’t work for me, and I struggled with blood counts. Compared to the AC, the Herceptin that I am on now is a dream. The worst part is driving to the infusion center! We need drugs like this for everyone – effective and easy to take.

Do you have any special tips or tricks that worked for you in combating any side effects of any form of breast cancer treatment?

I always recommend that people talk to the infusion nurses. They have seen everything, and they are really good at side effect management. It was a nurse who suggested that I try lorazepam for nausea during the AC cycles. It was the only thing that kept me from vomiting non-stop for 24 hours after treatment. The nurses are just full of helpful information!



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Thank you so much, Kelly, for taking the time for this interview.

Kelly can be found on Twitter, along with METAvivor. 

Watch her interview on Lifetime's The Balancing Act.