Our upcoming February Cure Panel Talk Show on myeloma will feature a panel of experienced myeloma survivors who will try to help you with your questions on living with myeloma.
Meet our panelists here…
|Pat Killingsworth (Author/Blogger/Myeloma survivor/Advocate)
Myeloma Beacon columnist and blogger, Pat was diagnosed with multiple myeloma in April 2007 at age 51. Pat is an author of four myeloma books Pat’s books include, Living with Multiple Myeloma, Stem Cell Transplants-A Patient’s Perspective, and New Multiple Myeloma Therapies, and Financial Aid for Myeloma Patients and Caregivers.
Follow Pat: http://multiplemyelomablog.com/
First thought - Silly now, but at the time my first thought wasn’t about life or death. It was, “I am ‘stuck’ with a life of needles!
First fear - I was instantly concerned for my wife and how she would handle things. I had been her caregiver, now she would be mine. I understood how hard that would be and felt bad for her. But she was/has been a rock! When she kicks-things-into caregiver mode, she’s a machine! Helpful, loving and supportive. Always there when I need her.
First resource that you tapped into - IMF website, myeloma.org.
First drug/treatment opted for – Revlimid/dexamethasone.
First myeloma friend - The now famous Don Wright and his lovely, supportive family!
One day to day challenge post treatment - Living with pain from bone damage that occurred prior to my diagnosis.
One important question that you should ask your oncologist - Which supplements or foods should I take/eat? Which should I avoid? If they don’t have answers, seek-out nutritional professionals to help.
One organization that a new patient should go to - International Myeloma Foundation (IMF).
One dietary change that may help - Add curcumin (at least 2 gm a day) to your diet. Helps fight myeloma and enhances Velcade and Revlimid treatments.
One lifestyle change that you could do without - I miss running! Skiing! Too much bone damage to safely do these things.
| Gary Petersen (Editor/Blogger/Myeloma survivor)
Gary is the editor of myelomasurvival.com and a 6 year survivor of multiple myeloma. He is now 6 years into CR post a stem cell transplant. He works with Myeloma specialists to provide life expectancy and survival rate data through his site.
Follow Gary Petersen: www.myelomasurvival.com
First thought on diagnosis - I was just numb, and it felt like I was in a whirlwind. I had gone through a number of tests to see why my kidneys had failed, and they came back and said it was one of three possibilities and it turned out to be the worst of the three.
First fear – You read the statistics, and the first fear is that you will be dead soon, so get your affairs in order and prepare for your exit.
First resource that you tapped into – The doctors, caregiver/wife, family, and faith.
First drug/treatment opted for – I had Cytoxan, Thalimid, and dex at Mayo. I then went on to UAMS for Stem Cell Transplants.
First myeloma friend – A number of people I met at the North Florida Myeloma support group.
One day to day challenge post treatment – My kidneys had failed so I had to be on dialysis, and this was very difficult. My diet had to kidney friendly and my wife and her sister almost starved me, and I couldn’t eat much of anything that was good. Big bummer.
One important question that you should ask your oncologist - I think the most important thing to discover is to find an oncologist that goes to the major myeloma conventions like ASH, participates in myeloma clinical trials, has treated a lot of myeloma patients and one you feel comfortable with.
One organization that a new patient should go to – The IMF(International Myeloma Foundation) is my first choice.
One dietary change that may help – I think that I have become far more aware of what I put in my body, more vegetables, less processed food, less sugar, as few additives in food as possible(organic), and more fiber.
One lifestyle change that you could do without - It would be nice not to think about myeloma, but like any cancer, it just keeps coming back into your head no matter how much you try.
|Nick van Dyk (Executive/Musician/Humorist/Blogger/Myeloma Survivor)
Nicolas van Dyk (Nick) is a senior executive with a major media company, and in his spare time, he is the guitarist / songwriter for the rock band Redemption. He is in three years of complete remission following aggressive chemotherapy including tandem transplants and firmly believes myeloma can be cured in a majority of newly diagnosed cases through aggressive treatment.
Follow Nick: http://nvdmyeloma.blogspot.com/
First thought- How long do I have to live?
First fear – Not being around to see my children grow up.
First resource that you tapped into – Google
First drug/treatment opted for – Total Therapy, which includes Velcade, Dex, Thalidomide, five kinds of “real” chemo, two transplants, Revlimid and a partridge in a pear tree.
First myeloma friend – A woman named Lois who had been through Total Therapy and answered my questions.
One day to day challenge post treatment – Gastrointestinal distress
One important question that you should ask your oncologist – What are the full range of treatment opinions out there, and what are the pros and cons of each?
One organization that a new patient should go to – MMRF
One dietary change that may help – I don’t really fret about diet. Moderation and vegetables and plenty of water, I suppose.
One lifestyle change that you could do without – The only lifestyle change I’ve made is managing stress differently, and I rather enjoy that lifestyle change! :)
|Sandy Hirsch (Myeloma survivor/ Founder/Group leader of the Charlotte, NC Myeloma Support Group)
Sandy Hirsch of Charlotte, NC was diagnosed with Multiple Myeloma in August of 2009. Sandy and her husband, David, started a myeloma support group in 2010, the first in Charlotte. In Sandy’s words, We started the support group for two reasons…to help others and to help ourselves. It has been very successful on both counts.
To contact Sandy mail email@example.com
First thought on diagnosis – A kick in the gut..what is this Multiple Myeloma? Why me?
First fear – Becoming frail, losing quality of life, missing my family
First resource that you tapped into – Already had a hematologist/oncologist for anemia, so we discussed plans. I found the IMF and learned so much
First drug/treatment opted for - I started on Revlimid, Velcade, Dex for 5 cycles
First myeloma friend - I sent out an email through the IMF list serve, asking if there was anyone in my area newly diagnosed…Found my best MM buddy 3 yrs. ago and we are extremely close. Even had our SCT in same week at different location.
One day to day challenge post treatment – Fatigue, different from being sleepy
One important question that you should ask your oncologist – Are you ok that I intend to do a lot of research and ask questions about everything.? Also, what is your experience with MM patients?
One organization that a new patient should go to – The International Myeloma Foundation has a hotline and reading material on every aspect of this disease.
One dietary change that may help - No artificial sweeteners
One lifestyle change that you could do without – Some days constipated other days, diarrhea.
Register for our February Cure Panel on Myeloma here or mail firstname.lastname@example.org.
- February Myeloma Cure Panel Co-hosted By Pat Killingsworth Devoted to Answering Myeloma Questions
- Myeloma Cure ‘OR’ Control Debate Heats Up, Gary Petersen’s Views
- Panelists Blog About Cure vs. Control Myeloma Cure Panel Discussion
- Cure Talk Interviews Gary Petersen, Editor of the Multiple Myeloma web site myelomasurvival.com
- Listen HERE! To the Myeloma Cure Panel discussion with Pat Killingsworth on Myeloma Cure versus Control