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