Monday, June 14, 2010

Myeloma Mondays #20: Frank from Brookline, MA

Where were you born and raised?

  • Born in Dorchester, Ma. Raised 15 miles south of Boston.

Where do you currently live?

  • Currently live in Brookline, Ma. One half mile from Fenway Park.

When were you diagnosed and how old were you?

  • I was 54 when diagnosed in December of 2002.

Did you know what MM was prior to diagnosis?

  • Had not a clue.

Is there anyone else your in family with MM?

  • No.

What led to your diagnosis?

  • I was bench pressing, (attempting to), and experienced sharp pain in my upper right rib cage. Felt a hard round bump between ribs which I self diagnosed as a popped cartilage. Finally went to my primary care Doctor who sent me immediately for a scan and I was operated on to remove a plasmacytoma from my chest. Had to take sections of two ribs with it. I tell people I was in a knife fight.
How many times were you referred before actually being diagnosed?

  • One…
Where have you received treatment?

  • Dana Farber Cancer Institute in Boston.

Explain your treatment history:

  • 1-6-2003, surgery to remove tumor from my chest.
  • 3-1-03 – began 20 days of radiation.
  • Five years in remission
  • April – May 2008, checkup reveals protein spike. Scans show small lesions on three vertebrae.
  • June – July 2008, two cycles of radiation
  • Sept. 2008, began six months of Rev plus Dex. Omeprazole for heart burn and a once a week antibiotic.
  • April 2009, stem cell harvest attempt failed. Became ill because of dehydration. My fault.
  • May 2009, Cytoxin,much neupogen, self injected daily, and another similar, more potent drug the night before the next harvesting attempt.
  • June 2009, successful harvest.
  • July, Meeting with Oncologist to schedule transplant and labs show numbers look great. Postpones tp.
  • Monthly blood work and Zomeda.
  • March 2010 labs showed proteins up; looking forward to labs being taken tomorrow, 4-30-10.

Why did you or your doctor choose a specific treatment?

  • Oncologist wants to avoid wearing out a drug. Early history, my mm was not aggressive until relapse.
What has been the side effects of the different treatments?

  • Radiation: fatigue towards the end of treatment; rash on area radiated.
  • Rev: stomach, dry mouth, … muscle cramps mostly at night. Minor consideration in view of Rev’s success.
  • Dex: I’m told I became impatient, edgy, anxious and less fun to be with. I was oblivious.
  • Cytoxin: hair loss. Came back curly and wiry texture. Has returned to normal.
  • Zomeda, mild joint and bone pain and light flu like symptoms for a day after.

What has been the hardest thing about your MM journey?

  • Hate to admit it, but the hardest is waiting for the other shoe to drop. For example, I think I have put off some fun things in order to avoid missing work, (and have been able to work full time other than two weeks after the operation and during the stem cell harvest), to avoid becoming expendable, or expended..
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

  • Stay positive and do the things you want to do. I went on line to investigate my newly diagnosed mm back in early 2003 and took less time off, took less trips and so on, thinking I did not have enough time remaining to be “frivolous”. The treatment discoveries for mm are providing significant control of the disease and new drugs are coming into use that are even more potent. Here I am seven years after diagnosis, training for the Pan Mass Challenge, 190 mile bike ride to benefit the Dana Farber.
How have you been able to stay positive and encouraged in your MM journey?

  • Keeping my schedule busy, as it was before mm; enjoying the support of family and friends; meditation or some kind of spiritual connection.

After being diagnosed... What perspective was changed the most?

  • I think you worry more about those you love than about yourself. My ambition to be successful, to gain wealth and power, has been replaced by wishing nothing more than walking with my kids, or listening to my wife talk about her day. I’ve come to enjoy a daily predawn walk with my dogs and in particular, on the icy cold mornings, face first into the clean, cold air .

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

  • I worked as a roofer going through college. In those days we ripped old tar and gravel industrial roofs off, without respirators of course, and replaced them with asphalt and stone. This required melting 100 pound “kegs” of solid asphalt in a vw sized machine we called a “kettle”. We all breathed in the fumes and worked shirtless in the blazing sun, never getting sunburned because the asphalt particulate from the smoke would cover you with a dirty, dry soot that acted as a sun block. It would be an interesting study to find some old roofers and analyze the population for mm.

What MM sites or blogs had you found good information from after diagnosis?

*Read other Myeloma Mondays by going here.

**To add your story to MM Mondays Story Time copy and paste this questionnaire (click here) and send it in an email tocancerkicker at gmail dot com. I would love to share your story! -Phil

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