Cure Talk Interviews Matt Goldman, Multiple Myeloma Survivor, Blogger, and Myeloma Cure Panelist
Matt Goldman was diagnosed with multiple myeloma in May 2011 at the age of 49. With the help of his team of doctors, he has achieved partial remission and is currently in a maintenance phase of treatment. He had his stem cells collected in December 2011, but has no current plans to undergo a stem cell transplant. His two primary doctors are Dr. James Berenson and Dr. Vu Phan. Matt is a land use planner for the Port of Long Beach. He is recently married and enjoys spending time with his dog and on his bike. He has a blog that documents his journey, www.mattvsmyeloma.com and is also on twitter at @mpg61. Matt is a Myeloma Cure Panelist and participated in the myeloma cure panel with Dr. Parameswaran Hari as expert.
In this interview, Matt bares all and talks about his diagnosis, treatments, and what living with a myeloma diagnosis is all about. I thoroughly enjoyed interviewing Matt and hope you enjoy reading Matt’s myeloma story.
Me: It has been just over a year since you were diagnosed with multiple myeloma. Please share your myeloma story with us.
Matt: I was diagnosed on May 2, 2011. It is a day I’ll never forget. You never think anything serious like that would happen to you. The 2nd of every month I now make note of it being my anniversary. The first several months were pretty intense and scary.
We couldn’t get a drug regimen that worked, my kidneys were failing and I was in and out of the hospital. Hospital stays were the worst for me. I’d lie there, imaging how I could kill myself with the least pain and effort. Not good for my mental state. My primary oncologist, Dr. Vu Phan is a hematologist in Long Beach and absolutely the best. I’m so lucky to have him. But, even he was at his wit’s end and recommended we see a myeloma specialist, Dr. Berenson. Dr. B tried a whole of host of traditional and non-traditional drugs to find something that worked. A mix of Treanda (typically a Leukemia drug) and Revlimid seemed to do the trick.
I’m not in complete remission, but do have a great response and have achieved partial remission and started my fourth cycle of maintenance, which so far is doing the trick. I have even seen some numbers improvement while on maintenance.
I haven’t had bone involvement, but my kidneys have been severely impacted. I never did dialysis, even when my creatinine was over 8 and my nephrologist wanted me to start. I just couldn’t make that leap and add dialysis to everything else I was doing. Funny, that’s where I drew the line. Currently my creatinin is down into the mid fours. Still not great but much better. I’m still on a renal diet and have switched to a nephrologist who has more experience working with patients with kidney failure as a result of myeloma. My first kidney doctor was good, but her focus was on kidney failure and not myeloma. Therefore, her prognosis for my kidneys improving wasn’t great. It’s helpful in my recovery to have positivity.
I would never want to have cancer and I always thought people were nuts for saying cancer made them a better person. But it’s true. I hate myeloma and at times, it’s maddening that I’m going through this. But, I feel like I have hugely improved as a person and so much more confident in my own skin and with who I am.
Me: What were your early symptoms?
Matt: I used to ride my bike to work every day. About a ten mile ride each way. I loved it. But I was finding that I was getting really winded and tired on rides that typically were not a big deal. Short, minor hills were tuckering me out. Getting deep breaths was becoming super difficult. This was about February of 2011. Around the same time, I was becoming fatigued at night, getting daily chills, daily fevers, and night sweats. At work, I’d have to take naps at lunch time just to be able to make in through the day. Over three months, I tested for diabetes, tuberculosis and a host of other things. Finally, in late April, we were going to do a colonoscopy and endoscopy, but I was so anemic that the doctor put me in the hospital for tests and transfusions. At the hospital, we ran a bunch of infectious disease tests and did a bone marrow biopsy. All of it came together and we had multiple myeloma diagnosis.
Me: You are being treated by one of the best myeloma specialists, Dr. Berenson. What does the treatment regimen involve?
Matt: As I said, we did several regimens before finding one that worked. Initially it was Velcade and Dex. That didn’t work. Then we added Doxil to the mix and that didn’t work. We then tried Thalidomide along with Velcade. That didn’t work. Thalidomide was a scary drug, with all the precautions and warnings about how it should be handled. Then we tried Treanda with Velcade and Revlimid. Treanda is traditionally used for leukemia and it was starting to be used a little bit in Europe for myeloma. Dr. Berenson was running out of options, so we went to Treanda and had immediate results. I did 10 cycles of this mix before switching to maintenance, which is a combo of Revlimid, Velcade, Dex, and Medrol, another steroid. I think if my myeloma kicked in again, we’d try the latest myeloma drug, Carfilzomib which is achieving a fair amount of success.
Early on, I considered a stem cell transplant and went to the City of Hope, but my kidneys wouldn’t allow it. Dr. Berenson is not a proponent of the transplant and I’ve come to agree with him, based on our success. I did harvest my stem cells in December 2011 at Cedars Sinai with input from Dr. Durie. And they’re frozen away for the next five years.
I also do regular acupuncture, which has played a huge role in my kidneys improvement. I exercise, get massages, eat better and relax better…..all things I consider part of my treatment.
Me: Would you consider opting for clinical trials if need arises?
Matt: I would consider a clinical trial if the need arises. As I indicated, we tried Treanda given we were out of options. It wasn’t a clinical trial per se, but hadn’t been approved as a myeloma treatment drug in the U.S. But because of the success with Treanda, I would consider a clinical trial if necessary.
Me: Has the myeloma diagnosis changed your way of life?
Matt: My life has totally changed. Mostly for the better and some for the worse. I recently got married to my longtime girlfriend and I don’t think we would have made this step if it weren’t for the myeloma. Her role as a caregiver and motivator and friend has been amazing. We’re closer than ever, which is awesome. I think I am more honest with other people and more honest with myself. I’m better at saying no.
Relationships have definitely changed. I’ve lost friends and gained friends through this whole process. My interaction with people is totally different. I never realized that cancer could illicit such diverse responses from people. That’s been an eye opener and even a disappointment in some cases. I have also developed relationships with other patients and nurses and my doctors. They’re like family in some cases. It’s hard to see fellow patients going through their ordeals. It is tough to witness, but makes me feel very fortunate and humble that I’ve come as far as I have. Dr. Phan and his nurses are unbelievable with their care, empathy, and approach. As I said, this is something new and unexpected to me.
I tried to work this whole time. For many months, I was lucky to get in 15 hours a week. Now I’m back to full time and actually a better worker. Minor work issues no longer frustrate me. Stress is way down. Physically, I am feeling much better than I was several months ago, but I doubt I’ll ever be what I was. But I’m also getting older and that plays a factor as well. For a while, my energy level was at zero. I’m now able to exercise regularly and don’t need daily naps.
Not being able to ride my bike to work is a huge change. I might be able to do it, but I think right now, I’d be exhausted by the end of the day. I do think I am getting close to trying however. I do ride around the neighborhood and go on occasional weekend rides.
And just generally I need to be more mindful of my environment and my body. My maintenance involves infusion every other week. I handle it well, but I know that it lowers my immune system and makes me anemic. I’ve learned to be careful and avoid certain things. I travel, but have to really think about what I pack and make sure I have all my meds. I schedule travel around my treatment. I absolutely hate to miss a single chemo treatment.
When I was first diagnosed, I was really bothered by the term “quality of life.” To me it sounded a bit accepting of the disease and its effects. Dr. Berenson talks about “complete life.” And while I’m not back to normal physically, I do think I’m much closer to complete life. His words and approach really resonated with me.
Me: What is your message for fellow myeloma survivors?
Matt: Gary Peterson says it best that you need a myeloma specialist. You need someone who focuses on the disease 100%.
When I was first diagnosed, I learnt of an old friend who was diagnosed with myeloma a few years earlier. I didn’t want to talk to other patients at all early on, but I did talk to her and she said that we’re lucky. While myeloma is technically incurable, there have been so many advances that it’s more of a chronic disease. Perhaps a cure is around the corner. I think raising awareness of myeloma and other blood cancers it something all myeloma survivors can do.
For newly diagnosed, I’d say that it all becomes routine. I used to get mad about daily blood work and frequent doctor visits. Now I’m ok with it all. It’s no big deal. The mind and body adjust to this change.
I’d also say that it’s ok to get down once in a while and ok to get mad once in a while. At first I asked the question “why me”. But, really it should be “why not me” I’m nothing special or superhuman. Staying positive, exercising and staying as active as your energy allows are all hugely important.
Realize that you’re going to get a lot of opinions from doctors, relatives and friends. Go with a path and a doctor that you’re comfortable with. Ask your family and friends for support, not advice. If they can’t handle that, then you need to make sure that you put yourself number one. There is no definitive answer to any of this. But, choosing a path and being confident of that path is so critical. And minimize stress. This is key. I’m still learning.
And lastly, for fellow survivors, I’d say share positive messages with others. We all know that some crap comes along with all this, but fellow patients don’t want to hear this. We want to hear the good stuff. Together and individually, we can deal with this with pride.
Matt, thank you very much for your time. It was great to connect with you.