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Where were you born and raised?
- North Jersey, Exit 135 – that’s how we do geography in New Jersey
- Southeastern PA
- January, 2009 – 55 years old.
- Actually yes, an acquaintance had it for 7 years and I heard his story, broken bones, etc. However he does not have the blood marker so he needs to get semi-annual PET scans to see if there is any progression. He’s become one of my best friends. We are on the same meds and also talk on Dex days.
- Not that I know of.
- Normal CBC for cholesterol and sugar screening. Revealed a high total protein, more tests and the M Protein was 3.1. Didn’t take long to be diagnosed (a week).
- Just once, I did not like my oncologist at first. Almost ‘fired’ him, glad I didn’t, our relationship is very good now.
- At the present time I am on oral chemo, Rev 25 mg (21 days on, 7 off) and Dex 40mg once a week. I also get a dose of Zometa every other month at my doctor’s office.
- From January, 2009 – August 2009 – nothing as we were still in the smoldering state.
- August, 2009 – M Spike went to 4.2, started the Rev/dex + Zometa.
- M Spike decreased to 1.5 by January, 2010 and has stayed there for the past 6 months. Visiting U of P this month to decide next steps. Add Velcade, harvest stem cells etc.
Why did you or your doctor choose a specific treatment?
I am transplant eligible, no kidney or bone issues to date and I was lucky we caught my MM early. I was never even at Stage I. I am very active (ex-Marathon runner, cyclist, etc.) and I resist an interruption to that; however I believe we will harvest my cells soon and probably prepared for an auto SCT within the next year. Maybe not, my disease is stable and except for minor anemia, Hemoglobin between 12.2 & 13.2 and a slightly low RBC, I feel normal. Calcium levels and Creatine levels are normal. No lytic lesions to date.
What have been the side effects of the different treatments?
- The Dex gets me in trouble, I get aggressive in my behavior and I exercise heavily that day to counteract that. It works. Trouble sleeping on Dex days. The Rev gave me a rash, that went away and diarrhea which is under control if I eat bananas and yogurt.
- Just learning you have cancer. Once I got used to the dx you just live with it. This has been a pretty good 1 ½ years for me and I am looking for more good health years in the future.
- Get informed and DO NOT read about median survival rates. They are dated and useless. Don’t slow down, exercise, drink wine, do what you normally would do and as hard as it is, push the body. I truly believe getting the body to transport oxygen through the body has an effect on production of new RBC and a negative effect on the MM cells.
- Exercise, bike riding, golf, gym workouts all clear my mind and make my body feel good. As long as I know I can move my body I know I have a handle on things. Bike riding is the best!!
After being diagnosed... What perspective was changed the most?
- Protecting my family and living each day to the fullest. An old cliché but it’s true.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
- Father was probably exposed to asbestos during the 60’s (construction) but he lived to be 91…
What MM sites or blogs had you found good information from after diagnosis?