Monday, May 31, 2010

Myeloma Mondays #18: Ed from Manhattan Beach, CA

Where were you born and raised?

  • Racine, Wisconsin
Where do you currently live?

  • Manhattan Beach, California
When were you diagnosed and how old were you?

  • July 2006. Age 53 Beta-2Microglobulin: 3.6 (.1 into Stage 2). Significantly, I an a non-secreter (my cancer cells do not secrete M-Protien, meaning my disease progression is difficult to measure). Periodic biopsies are required.
Did you know what MM was prior to diagnosis?

  • No. Probably would have thought it was a misspelling of melanoma.
Is there anyone else your in family with MM?

  • No
What led to your diagnosis?

  • I experienced recurring pain in my ribs. Thought it was sports related. I heard a bone “snap” in my rib during a massage which led me to an orthopedist for evaluation. He looked at my x-ray, turned green, and told me that there “may be some pathology”. Subsequent x-rays confirmed the MM diagnosis.
How many times were you referred before actually being diagnosed?

  • First time.
Where have you received treatment?

  • All local in Southern California.
Explain your treatment history

  • August 2006: Dex. 40 mg/day. Twice/week. Zometa monthly.
  • Sept 2006: Velcade + Dex. Twice/week. Two weeks on, one week off. 7 cycles.
  • Maintenance therapy: Since December 2006: Monthly Zometa. 40 MG Dex once/week.

Why did you or your doctor choose a specific treatment?

  • My local oncologist served as a guide. I scheduled appointments with two local specialists, Dr. Mark Vescio and Dr. James Berenson. They were both knowledgeable and caring. But that was where the similarity ended. Vescio advocates autologous transplant. Berenson is well known for his opinion that the transplant does nothing at best and can be very harmful at worst. As most MM patients know, there is no right answer….so both of them are right. I went back and forth several times over which course to follow. Ultimately, I scheduled a consult with Dr. Brian Durie, who trained both Vescio and Berenson. Durie confirmed that the transplant was still the treatment standard and felt it should not be ruled out. However, he noted that patients response to Velcade and/or Revlamid was encouraging enough that there would be no major downside to trying them out before electing to go the transplant route. The key point that affected my decision was Duries’s observation that a transplant later would be just as effective as a transplant now. If less invasive treatment was not effective or if I relapsed quickly, transplant remained an option. So the Velcade/Dex regimen began and, thankfully, I responded well. My Beta-2 Microglobulin fell to trace amounts within 5 months. I have stayed in remission ever since following a continuous maintenance regimen of weekly dex plus monthly Zometa.

What has been the side effects of the different treatments?

  • Zometa: First dose of Zometa resulted in flu like symptoms for about a day. I’ve been taking it monthly ever since and have had had no further issues.
  • Velcade: I tolerated Velcade extremely well. First dose caused some discomfort (fatigue, constipation) but it was short lived. Subsequent doses were pretty easy for me. No nausea. Some fatique. Very light neuropathy. There were about 3 days during treatment that I found myself falling asleep at my desk at work. On those days, I left work and played golf…..thinking that I did not want to upset my sleep cycle by sleeping all day and that putting one foot in front of the other would keep me awake. It actually worked out well for me.
  • Dex: HATE IT. Who doesn’t. I get crabby, voraciously hungry and feel bloated. Yes, ladies, it is very much like PMS, except it is every week. On the positive side, I have not gotten puffy or gained a lot of weight. I try to follow a low-salt diet, which I believe helps. It was also noted that my blood sugar spikes on days that I take Dex. We tracked it with a diabetic monitor for about a month and my sugar drops on quickly when the dex wears off. So it was determined that no treatment was required.

What has been the hardest thing about your MM journey?

  • Honestly…it is the Dex. But, compared with others, this is a very minor complaint. I consider myself a lucky cancer patient….if there is such a thing. Also, since I do not secrete M-Proteins, I endure semi annual bone marrow biopsies. They are literally and figuratively a pain in the ass.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

1) Be encouraged by the speed with which new therapies are being discovered and made available. MM is much more manageable and treatable than it was just two years ago.

2) Talk to people! Patients. Doctors. Research orgs. Knowledge is power

3) Be VERY VERY careful about what you read on the web. 90% of what you see if out of date. If you go by this data, you’ll think you are in far worse off than you may be.

4) Remember that MM is different for every patient. What fails for others may work out for you. Also, be aware that the experts may not agree on how to treat you, but even though they disagree, they may both be right about things. Seems counterintuitive, but it is true.

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

  • It has been relatively easy for me because I am not suffering any disease related symptoms. I’m living a very normal life and that makes it easy to stay positive. I strongly recommend setting up a blog. It is very therapeutic.
After being diagnosed... What perspective was changed the most?

  • This sounds bad, but I’ve become rather impatient. I think that happens to a lot of cancer patients. I can’t stand waiting for things. I also vowed that I would never exploit the cancer (for such things as “officer, I know I was speeding, but I have a cancer that is usually fatal….” I think that would cause bad karma.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

  • No
What MM sites or blogs had you found good information from after diagnosis?

  • IMF, MMRF, Nick’s Myeloma Blog
*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


Jerry said...

Is Ed a non-secretor of only the monoclonal protein? If he secretes the light chain protein he could use the Freelite test to measure these proteins. My wife is a Lambda light chain only secretor and that is the main test we used to track her cancer load.

Shagz said...

Greetings to a fellow transplanted cheesehead from a cheesehead who has gotten a transplant! :)

I agree Dex sucks, but I don't like reading "frequent biopsies" because those are nasty as well.

All the best!

-Tom Chelius from Milwaukee, WI