CureTalk Interview: Paula Van Riper 14 years Multiple Myeloma Survivor about Working Through her Treatment and Planning Vacations
Paula Van Riper, Assistant Dean at Rutgers University in New Jersey, shares her successful journey battling multiple myeloma. Paula’s journey is remarkable since she has always been a step ahead in terms of myeloma treatment. A knowledgeable patient herself, Paula urges to educate and learn about the disease in order to maximize health benefits.
Read on to know how Paula, in spite of multiple myeloma diagnosis, is working, living and loving life.
Me: When and how did the diagnosis come about? Were there any symptoms that led you to see the doctor?
Paula: I was 51 years in July 1999 – feeling quite well, living an active life with no pressing medical problems. But I did have an ache in my right thigh for a couple of weeks that I thought was a muscle strain from by my ‘moderate’ workouts in the gym on the treadmill or stair stepper.
I saw a primary who ordered an X-ray of my back and she saw lots of arthritic changes – referred me to an orthopedist. When I saw him, he immediately took X -ray of my hip and pronounced that I had a ‘hole’ in my femur and needed a rod to be inserted in my leg immediately to stabilize my bone. Well, I was too shocked to even accept that as ‘factual’ so I agreed to have a scan done of the ‘hole’ the next day. The hole turned out to be a solitary plasmacytoma. My femur was seriously at risk, thus, I did have an emergency surgical procedure, but not to insert a rod but a hip replacement.
While in the hospital myeloma diagnosis was confirmed by a biopsy of the tumor and supported by an elevated IgG and M spike.
In my 14 years of meeting many people with myeloma – I found my story to be somewhat unique – finding a tumor prior to fracture is not unusual but to remove the tumor rather than radiating the tumor is very rare.
The hip replacement surgery in essence put me remission. During the next 3 years – I was in a ‘watch and wait’ situation, before eventually my disease progressed and warranted further treatment. These 3 years gave me plenty of time to research and learn about Myeloma and probably too much time to worry about what my future would be.
Me: You are a 14-year myeloma survivor. Pleases share the treatment cycles and schedule that you underwent during this phase. What was the most difficult period?
Paula: My first treatment was an autologous stem cell transplant in July 2002, 6 months later – Nov. 2002 I had a mini allogeneic transplant.
- I enjoyed a drug free period from 2002 to July 2007 – when I developed a compression fracture of L2 vertebra. Treatment was radiation to L2 along with Revlimid and Dex.
- 18 mths of Revlimid – produced neutropenia – decision to stop Revlimid
- July 2009 progression – treated with VRD (Velcade Revlimid and Dex) – only two cycles – developed neuropathy and VRD discontinued
- July 2010 – progression – agreed to clinical trial of Pomalidomide and Dex.
- April 2013 – progressed on Pom Dex
- June 2013 – back pain – MRI and Pet Scan confirmed diffuse tumor activity in spine
- July 2013 – Pom Dex and Carfilzomib (Krypolis)
The most difficult period was deciding whether to do the mini allogeneic transplant or not. The mini allo was suggested because in preparation for my autologous transplant – the cytogenetics test confirmed that I had deletion 13 chromosome. My doctor indicated that deletion 13 (at that time, 2001) was a ‘poor prognosticator’ for long term remission. He also thought at that time, that a mini allo might be curative. Since I was a reasonably young person, in good health, and, if I had a sibling match the suggestion was I seriously consider this as an option.
Researching the allogeneic transplants and the consequence of GVHD and the mortality rate associated it with and how infrequently this procedure was being done, it was by far the MOST difficult life altering decision for me.
I spent weeks and countless sleepless nights trying to decide whether to do it or not. I also chose NOT to include my family and friends in this highly personal decision. My fear was that IF I chose to do it and my family or friends encouraged me – they will always feel some degree of guilt IF I lost my battle because of the GVHD – which was quite possible. I did NOT want my family to ever live with that – so – the decision was my own and not done in consultation with my children, siblings or dear friends.
I chose to take the risk and ultimately of course we can say today it was the right decision. However, as I reflect back on this decision and all the others decisions along the way – certainly the mini allo was BY FAR the most challenging and risky decision I ever made. Making that decision however, has made all subsequent decisions treatment decisions not quite as difficult to make.
The irony is ‘deletion 13’ today is not the high risk it was considered back then. If we had know that back in 2001 the mini allo would not have been a treatment option even offered to me. However, I now wonder if I had just the autologous transplant – would I have enjoyed the 5-year drug free period? Something we will never know.
Also during those 5 years of remission, myeloma research was very active and the FDA approved Velcade and Revlimid. The timing was quite beneficial for me because when I did relapse in 2007 new drugs were then available. Lucky me!
Me: Do you think you have benefitted from the various different treatments offered to you? How so?
Paula: I know I have benefited. I responded positively – for some period of time – from every treatment I have ever been offered. Even though I only used VRD for 2 cycles, I did have a good response before discontinuing due to neuropathy. My 2 transplants, Revlimid and Pom Dex – all put me in remission for some period of time.
Currently, I have had only four cycles of Kyprolils. Pomalsyt and Dex and fortunately this combination too have produced a positive response.
Me: You have worked through most of your treatment regime. Was it difficult to do so? How have you been able to handle the fatigue and the drug reactions?
Paula: Yes, I have been fortunate to be able to work while undergoing all the treatment regimens. How? Well, not sure other than to offer the explanation that I have a high level of energy and a pretty hardy constitution. I rarely get sick. But, I am also cautious and get plenty of rest – try to maintain a reasonable diet – low fat and low sugar etc.
My employer has also been very generous allowing me to work from home – if and when, necessary.
Me: Is there any current treatment regime that you have?
Paula: My current treatment is the most restrictive; Kyprolis requires an infusion in the doctors office 2-days a week – 3 weeks each month. I also take in combination with Kyprolis – Pomalyst and Dex. This schedule is very disruptive to my work hours – but once again, my employer has allowed me to take time away from work – 2 half days per week – 3 weeks each month.
The generosity of my employer, my ability to work from home and the good fortune that the side effects of my treatments have not been severe have allowed me to continue to work full time.
Keeping my employment also allows me to thankfully keep my health insurance coverage, which includes an excellent prescription benefit; which is wonderful. Considering so many new drugs are EXCEPTIONALLY costly.
Me: Any special lifestyle changes incorporated since the myeloma diagnosis.
Paula: The biggest life style change is that I now treasure each and every day of my life and I no longer postpone or delay enjoyment. I actively plan vacations and get-a-ways as frequently as possible. I find time to laugh and enjoy my co-workers, friends and family each and every day. I truly do not ‘sweat the small stuff’. So much of life’s inconveniences are the small stuff.
Through the lens of myeloma I have learned to prioritize what is really important and have been able to appreciate the opportunities that have come along with the diagnosis.
Me: What advice/ suggestion would you like to share with readers who are currently battling myeloma?
Paula: Best advice – educate yourself about myeloma – take charge and learn about the disease – especially your own biology and how your disease may be different or how your body responds. You are the head of your own medical team and everyone on your team essentially works for you!
Create a team of specialists and keep the communication flow between all members. Once you have a team you can trust and value, you can relax somewhat.
Enjoy life! And know that ‘when the shoe drops’ your team is ready to jump into action!