Myeloma Mondays #29: NY Fan from Southeastern PA

**Share your MM journey or that of a loved one and be a future Myeloma Monday by [clicking here].

Where were you born and raised?

• North Jersey, Exit 135 – that’s how we do geography in New Jersey

Where do you currently live?

• Southeastern PA

When were you diagnosed and how old were you?

• January, 2009 – 55 years old.

Did you know what MM was prior to diagnosis?

• 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.

Is there anyone else in your family with MM?

• Not that I know of.

What led to your diagnosis? (example: broken vertebra)

• 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).

How many times were you referred before actually being diagnosed?

• Just once, I did not like my oncologist at first. Almost ‘fired’ him, glad I didn’t, our relationship is very good now.

Where have you received treatment?

• 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.

Explain your treatment history:

• 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.

What has been the hardest thing about your MM journey?

• 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.

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• 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.

How have you been able to stay positive and encouraged in your MM journey?

• 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?

• CancerCompass.com

***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

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