Myeloma Mondays #41: Jeff from Salisbury, NC

Where were you born and raised? Born: Stuttgart, Germany (US Army); Moved to Salisbury, NC when I was 9 months oldWhere do you currently live? Salisbury, NCWhen were you diagnosed and how old were you?11/10/2009 – age 42, IGG KappaDid you know what MM was prior to diagnosis? No, I had never heard of it.Is there anyone else your in family with MM? No.What led to your diagnosis? Extreme pain in my back/sacrum. Turns out I had a compression fracture of the T-12 and 4 tumors in my sacral area; along with tumors in both my humeri and fibula and lesions on most of the flat bones in my body.How many times were you referred before actually being diagnosed? 3Where have you received treatment? Wake Forest University Baptist Medical Center’s Cancer Care CenterExplain your treatment history:
11/2009 – started first of 10 radiation treatments to the tumor in my left humerus12/2009 – started first of 35 radiation treatments to the 4 tumors in my sacrum12/2009 – started first of 4 cycles of Velcade-Doxil-Dexamethasone2/2010 – received melphalan in preparation for stem cell harvest4/2010 – autologous stem cell transplant7/2010 – vertebraplasty for T-12 compression fracture7/2010 – tried maintenance Revlimid 10 mg (failed – neutropenic)8/2010 – radiation to stubborn tumor at T-10 (10 treatments)8/2010 – 12/2010 – off and on the maintenance Revlimid 5 – 10mg with poor results2/2011 – finally able to stabilize on 5mg of Revlimid3/2011 – increased Revlimid to 10mg (and side-effects begin) failed again5/2011 – re-started Revlimid 5mg dosageWhy did you or your doctor choose a specific treatment?
I requested to be treated aggressively. I was “young” and in great shape before this took me down. I thought I would be up and running again in no time.What has been the side effects of the different treatments?
With the VDD/radiation treatment, the biggest side effect was fatigue. I also had styes on both eyes that my hemalogist-oncologist related to the velcade. The chemo put me into a post-menopausal state, which has remained.Once I had the melphalan, nausea was the worse followed closely by the loss of all my tastebuds.Now with the Revlimid, the fatigue is back.I continue to have back pain and spot tenderness at the sites where the tumors were located.What has been the hardest thing about your MM journey? Accepting that I cannot do the things I loved to do before — rafting the Gauley; hard-impact exercises; hardscaping my lawn; walking my big dog, Joe. Accepting that I may not be able to work like I worked before. I have had a hard time embracing “new normals.”Fear of relapse has been pretty constant. I really wish they would re-do those statistics!What are the top lessons learned that you would want a newly diagnosed MM patient to know about?Stay strong in spirit…you will get through the treatment.It’s ok to lean on others for a while.Seek someone outside your inner circle that you can talk to…a counselor, spiritual leader, etc. Someone you can really vent to without having to worry about worrying them.How have you been able to stay positive and encouraged in your MM journey?
I am one of the lucky ones to have a supportive family – parents, sisters, husband, son – who have walked this whole journey with me. I also have great friends and neighbors who have been there for me and Jeff, too.My dogs, Gus and Joe, were wonderful companions. We started calling Joe, Dr. Joe, because he was constantly by my side when I was at my sickest. His 88-pound body actually was very healing. It was like a full-body compression heating pad.After being diagnosed… What perspective was changed the most?
Priorities. Prior to diagnosis, I was a workaholic. I worked 10 – 12 hour days in a stress-filled job, and loved it! Now, I would rather spend my time with my friends and family…spend time in nature…spend time with my dogs. I’ve decided to just be good at work and great at wellness for the rest of my life.Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
Yes. Prior to going into hospital administration, I was a horticulture therapist. I handled a lot of pesticides, fungicides, herbicides, and fertilizers.Immediately prior to my birth, my father was in contact with Agent Orange in Vietnam.What MM sites or blogs had you found good information from after diagnosis?Myeloma BeaconMMRFCrazy Sexy Cancer (Kris Carr) – not a MM site, but a different way of dealing with having an incurable cancer


Myeloma Mondays #40: Geert from Hamburg, Germany

Geert with his little duck pottery with football and helmet (almost blue and maize) in a small souvenir shop in Spain last year.

Where were you born and raised? In was born 1965 in Hamburg, Germany Where do you currently live? Hamburg, Germany – I´m still living in Germany´s most beautiful town When were you diagnosed and how old were you? (example: 8/8/08 – age 28, IGG Kappa) 08/12/2009 – age: 44, IGG Kappa Did you know what MM was prior to diagnosis? I even haven´t heard a word about it Is there anyone else your in family with MM? No, nobody What led to your diagnosis?
Nothing specific, I´ve just been weak all the time How many times were you referred before actually being diagnosed? Just one time. My doctor sent me directly to the hospital and the first blood test showed the MM indicators Where have you received treatment? Asklepios Hospital, Hamburg, Germany
Explain your treatment history:
09/2009:3 cycles PAD01/2010: Autologous Transplant #104/2010: Autologous Transplant #2
Why did you or your doctor choose a specific treatment? Fortunately our team of doctors is really experienced and we have a dedicated ward for stem cell transplants. So, the decision was based on the “typical” criteria (staging, etc.) and the doctor´s experience What has been the side effects of the different treatments? No, side effects at all What has been the hardest thing about your MM journey? The first days after diagnosis when I and my family started to understand what it really means. What are the top lessons learned that you would want a newly diagnosed MM patient to know about? Accept the situation and don´t start asking yourself questions like “Why me? Why in the age of 45 when the average is 71?”Find a team of doctors you really trustLearn about MM and treatment options but choose only “trustworthy” sources and discuss “your” findings with your doctorsStart to fight MM, comply to the rues the doctors give you and finish your treatment planNever quit!!

How have you been able to stay positive and encouraged in your MM journey? From the first day till complete remission – With the help of my wife, daughters, family and friends. As soon as possible live your normal live even during times of chemo and during hospital stays. In times of cell phones and internet it is quite simple to stay connect when being in hospital. I´ve used internet video telephony to talk with my daughters because they were not allowed in the transplant ward. I also follow the various sport seasons on the internet. For me it also worked quite well to stay in contact with my colleagues and see progress on the projects I used to work for before and between my hospital stays. But not all these things might work for other MM patients as well. Everybody has to find his own way but I hope some of my ideas will help. After being diagnosed… What perspective was changed the most? Some things became less important but today (one year after the last HDCT/transplant and with great results) it is pretty much as it was before. Of course from time to time I think about MM but not too much. When time is limited why should I waste it by thinking about MM all the time. The thing I have changed is that I fulfilled some of my plans/ dreams. After being in Ann Arbor and the Big House I wanted to also see a game at Penn State. That´s what I did last year. Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis? Maybe my father during WWII What MM sites or blogs had you found good information from after diagnosis? The IMF website and on facebook and the DKMS on facebook


Myeloma Mondays #39: Jody from Baltimore, MD

Yet another young 30 something taking on Multiple Myeloma with two young and adorable children. One than turns 5 today! Jody is graciously documenting her story via her own blog; so add another trooper to the myeloma community that is going to help bring awareness to this disease and educate us all throughout her own personal journey to dominate Multiple Myeloma! Here is a detailed account of her diagnosis.
Jody’s Blog: M is for Myeloma

Where were you born and raised? Warwick, RIWhere do you currently live? Baltimore, MD (Also lived in Boston and Dallas)When were you diagnosed and how old were you? 12.22.2010, just turned 34. I’m hyposecretory Kappa light chain with numerous focal lesions. I have a t(11,14) translocation by FISH, and am low risk by GEPDid you know what MM was prior to diagnosis? As a research biologist with some background studying carcinogenesis I’d heard of it, but didn’t know any specifics.Is there anyone else your in family with MM? noWhat led to your diagnosis? I broke two ribs last summer. The first doctor to see me did mention multiple myeloma, but there were no smoking guns from the tests he ran and I don’t fit the demographic so he didn’t dig too deep.How many times were you referred before actually being diagnosed?I started having another painful spot at the end of October and I found myself a new doctor. He referred me to an orthopedic oncologist, who ran the SPEP and did a fine needle aspiration of one of my lesions. The SPEP was normal, but the lesion showed atypical plasma cells. He then referred me to a myeloma specialist at Johns Hopkins. I then went in search of several other opinions after doing my homework on different treatment approaches.Where have you received treatment?
Myeloma Institute for Research and Therapy in Little RockExplain your treatment history
I just started TT4 LITE.MVTD-PACE induction followed by stem cell mobilizationTandem ASCTVTD-PACE consolidationVRD maintenance for 3 yearsWhy did you or your doctor choose a specific treatment
The first doctor gave a very “choose your own adventure” recommendation. Start with a choice of 3 drug induction, do an ASCT immediately or wait until later, and consider maintenance therapy. By this time I’d done a lot of my own research, including finding lots of great blogs and websites and also reading a lot of the primary literature and scientific reviews on myeloma. I’d also had enough people mention Arkansas that I knew it needed to be considered seriously. I questioned my Hopkins doctor about it and she restated basically the concerns I’d heard repeated time and again. No one can say the outcomes are better, it’s harsh treatments, and you may risk something by using everything up front. I booked an evaluation and also an appointment at Dana Farber for a third opinion. In the end I knew Arkansas was the place for me, but I know it’s not for everyone.What has been the side effects of the different treatments?
I’m only 6 days in, so only very minimal. A tiny bit of nausea, a little tingling from the velcade, and pretty tired today. What has been the hardest thing about your MM journey?
Thinking of my family and how this will affect them, especially my kids (age 2 and 5).What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
Do your homework and reach out to other patients!! There are so many wonderful people out there willing to share their experiences and perspectives and it’s been so incredibly valuable contacting people. I can’t even imagine how difficult it is for someone who doesn’t know much about biology to get to the bottom of all the different treatment approaches out there, but make sure you ask questions and find a doctor who can take the time to help but things in terms you can understand. How have you been able to stay positive and encouraged in your MM journey?
At first it was not easy at all, but know I’m in a better place about it all. It’s not helpful to get stuck in the muck of feeling helpless and scared and sad. It is important to work through those feelings and to acknowledge them and address them, but you’ve got to able to move past them. My husband has been an incredible support and has helped pull me through some of that. In the end you have to accept the lot in life you have and do everything you can to life your life to the fullest and embrace every day. As a clinic nurse said to me the other day “tomorrow is not promised to me either”. After being diagnosed… What perspective was changed the most?
Gosh probably everything. I think living with cancer like this just makes me slow down and reevaluate the important things in life. I’m more dedicated to living in the moment. Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
I’m a research scientist so I’ve worked in many labs. I’ve worked with some toxic chemicals and also with cell lines containing human and animal viruses associated with cancer so there is definitely a concern that could have contributed. My father is also very worried that his exposure to agent orange in Vietnam could have been passed along to me somehow, but I think that’s very unlikely. I have a PhD in Environmental Health Sciences with a concentration in molecular toxicology so I am really interested in links to environmental exposures especially since more and more young people are being affected.What MM sites or blogs had you found good information from after diagnosis?Too many to list them all…this one of course, also Myeloma Beacon, International Myeloma Foundation***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to phil at cancerkicker dot org. I would love to share your story! -Phil