Meet Our Myeloma Cure Panelists: Jack Aiello, Karen Crowley, and Amy Garofalo
March is Myeloma Awareness Month and to mark this we have our Get to know our Myeloma Cure Panelists series. These are people/survivors/bloggers/ who tirelessly work towards collecting, understanding, and researching information about myeloma to increase awareness and share their knowledge to the benefit of the myeloma community.
This is the second part of Meet our Cure Panelists series. For part 1 click here.
|Jack Aiello (Myeloma survivor/Advocate)
Jack Aiello was born 62 years ago in San Mateo, CA and raised in Silicon Valley. From 1976-2001, Jack worked in various technical sales & marketing positions. However in 1995, Jack was diagnosed with Multiple Myeloma, which started him on a series of numerous treatments, including lots of chemotherapy, 3 stem cell transplants (2 auto’s, 1 full allo), 4 rounds of radiation and 2 clinical trials. During the last 11 years, he has been active in many rewarding volunteer opportunities, including those with LLS, IMF, MMRF and others.
First thought: what the h… is myeloma?
First fear: Told no cure and 2-3 years to live
First resource that you tapped into: Hospital library (not a good idea to go to printed material but internet support was quite new in 1995). Then found LLS support group who directed me to SF Bay Area MM support group.
First drug/treatment opted for:VAD followed by tandem auto transplant
First myeloma friend: Jim, who I met in LLS support group.
One day to day challenge post treatment: Avoid emotional highs and lows from lab results; rather realize it’s all about managing MM and there will be ups & downs as part of this process.
One important question that you should ask your oncologist: How many other MM patients are you treating?
One organization that a new patient should go to: .International Myeloma Foundation
One dietary change that may help: Nothing other than trying to control weight
One lifestyle change that you could do without: Lower energy level
|Karen Crowley (Myeloma survivor/Blogger/Stay-at-home Mom)
Karen Crowley is a proud mother, and author of a blog. Karen was diagnosed with smoldering myeloma in 2005. She writes about myeloma and her daughter on her blog to keep her family and friends updated about her progress and to keep herself away from negativity. Karen’s blog is humorous and provides readers with a breezy, often funny, respite from cancer thoughts.
Follow Karen: http://adventuresofcancergirl.blogspot.in/
First thought on diagnosis: Shock. I’d been reassured by two doctors that it most likely wouldn’t be myeloma, because they believed it was strictly an “old person” disease, and I was only 30. I was stunned when the test results came back showing it was indeed myeloma.
First fear: That I wouldn’t see my six-month-old daughter grow up; the statistics on the Internet said I wouldn’t even see her go to preschool. Now she is in second grade.
First resource that you tapped into: I did a lot of Internet searching, but I remember the MMRF website being especially helpful.
First drug/treatment opted for: I “smoldered” for 18 months without treatment, and then I started Rev/Dex.
First myeloma friend: I’ve met so many great myeloma patients. I can’t remember who I met first! When I was first diagnosed, I corresponded with a lot of people in their 20s and 30s who had leukemia or other types of cancer, because I couldn’t find any myeloma patients my own age.
One day to day challenge post treatment: This doesn’t apply to me, because I’m still on treatment!
One important question that you should ask your oncologist: I don’t know if this counts as a “question”, but my advice is to seek a second opinion from a myeloma specialist, and make sure your local doctor is willing to work with that specialist. I got a second opinion at the Mayo Clinic, and it made an enormous difference in my course of treatment.
One organization that a new patient should go to: The Multiple Myeloma Research Foundation (MMRF) is an amazing organization.
One dietary change that may help: I don’t stick to any kind of strict diet, but I tried to eat fairly healthy food before my diagnosis (veggies, fruits, whole grains, etc.), so I just kept doing that. I figure the stronger my body is, the better it will be able to deal with the Revlimid and more treatments down the road.
One lifestyle change that you could do without: I’m really lucky that I don’t have side effects from the Revlimid, but making all of the arrangements to get it every month is kind of a pain!
|Amy Garofalo (Myeloma survivor/Blogger)
Amy Garofalo lives in Connecticut with husband of 22 years and two boys ages 16 and 13. She started her own small Medical Transcription Company in 1996 and she also works for Middlesex Hospital as their Transcription Department Coordinator. Amy was diagnosed with Multiple Myeloma in April of 2011 – 7 months after starting her new job with Middlesex Hospital. She had a stem cell transplant, after many setbacks, on April 18, 2012. Her husband has set up a CaringBridge site for her.
Follow Amy: caringbridge.org/visit/amygarofalo
First thought on diagnosis – We cried and of course were shocked and overwhelmed with the information about this cancer we knew nothing about. But when I left the office, I said I was going to beat this!
First fear – Leaving my kids and my husband
First resource that you tapped into – My Oncologist gave me a stack of paperwork on Multiple Myeloma. The first sentence said “There is no cure, only treatment to prolong life” I never looked at that paperwork again and did not research or read anything for quite a while. My husband did a lot of research for me online, Myeloma Beacon and Blogs. I finally joined the MMRF when I was brave enough to start researching.
First drug/treatment opted for – RVD – Revlimid, Velcade and dexamethasone
First myeloma friend – Several myeloma patients on Twitter
One day to day challenge post treatment – There are lots of challenges, but one is my WBC and ANC counts never recovered after my stem cell transplant and no one knows why. I have to give myself Neupogen injections weekly to keep me safe from infection.
One important question that you should ask your oncologist – How easy is it to ask a question/get in touch with them? I have two oncologists, one at Dana Farber who is in charge of my treatment and stem cell transplant and my local oncologist who just administers the chemo and monitors weekly blood work. My Oncologist from Dana Farber, who is in charge of my treatment, gave us his email address and pager number at our first consultation. He answered every question we ever emailed. That was huge to my husband and I. It is not so easy to get in touch with my local oncologist, which is a little frustrating.
One organization that a new patient should go to – MMRF or IMF
One dietary change that may help – I don’t know if it is helping, but I have started trying to eat more organic and natural, unprocessed foods. Drink lots and lots of water and then drink some more.
One lifestyle change that you could do without – Living with cancer and your uncertain future – it is always on your mind.