Myeloma Mondays #14: Richard from Spring Hill, Florida

Where were you born and raised?

• I was raised in Queens, New York but have lived in Florida for the last 25 years.

Where do you currently live?

• I currently live about an hour north of Tampa in Spring Hill, Florida.

When were you diagnosed and how old were you?

• It was last July 2009 and I was and still am 58 years old.

Did you know what MM was prior to diagnosis?

• I had never heard of it before.

Is there anyone else your in family with MM?

• There has been cancer in my family but not MM.

What led to your diagnosis?

• Extreme fatigue. I was overcome by waves of fatigue for about 5 months.

How many times were you referred before actually being diagnosed?

• I had gone to my primary doctor about 5 times because I was feeling tired and my anemia levels were low. I and he for awhile, attributed it to side effects from my blood pressure medication. Finally, in July of last year, he told me he wanted to get it checked by a hematologist. At the time, I was not aware that a hematologist dealt with cancer until I arrived at the Florida Cancer Institute. Then I knew I might be in a bit of trouble.

Where have you received treatment?

• I have received my treatments at the Florida Cancer Institute in Spring hill under the care of Dr. Vikas Malhotra, who along with his staff is very supportive. I had my stem cells harvested at Moffitt Cancer Center in Tampa in Jan. 2010.

Explain your treatment history

• 8/2009: Started RVD Revlimid (25 mg)/Velcade/Dex
• 1/2010: Harvested Stem Cells
• 3/2010: Resumed RVD (10mg)

Why did you or your doctor choose a specific treatment?

• When first diagnosed, my doctor, Dr. Malhorta told me about these new novel agents, He told me that they offered me the best chance for a prolonged remission. He has recommended a transplant and I have talked to Dr. Alsina at Moffitt about it. I have responded fairly well to my initial treatment and will wait until my numbers go up before scheduling a transplant. Currently, my M-spike is .1 from 1.6 in July.

What has been the side effects of the different treatments?

• I am not sure what has caused the side effects either the Rev/Vel/ or Dex but I have had the following side effects:
• PN -- Peripheral Neuropathy (better since dose adjusted on Velcade) but still a problem.
• Rash/Itch -- This was very troublesome but has since disappeared. The itch was unbearable at times.
• Fatigue --This never goes away.
• Passed out -- When I stopped treatment to harvest the stem cells, I passed out a few times.
• Severe stomach and back pain -- This was fairly recent. It lasted 24 hours (probably a bug) and I was very close to going to the emergency room.
• Lack of appetite -- I have lost over 50 pounds since July. I was extremely overweight but with the med's I have lost the taste for most foods. It is the one thing I really miss.

What has been the hardest thing about your MM journey?

• There are a number of things that have been difficult. One is the fatigue levels which really prevent me from doing many activities. Another is the impact on my immediate family. My wife (Susan), 2 daughters(Lisa and Carly), brother(David) and in-laws (Frank and Eleanor) have been very supportive but it has impacted our lives mostly in a negative way. Dealing with the financial ramifications of this disease have been difficult as well. Being unable to work, has created a great financial hardship on my immediate family. Finally, I really miss enjoying foods like pizza, steak, etc. Other than that it has been fun.

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

• Learn as much as you can about this disease. Blogs like yours (MMforDummies) and Pat Killingsworth's Multiple Myeloma blog have been very supportive and educational. It is important to have confidence in your doctor and have an extremely supportive family. It was overwhelming and depressing at first (still is) but the more you learn about it, the easier it can be to deal with.

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

• It has been difficult at times but with the help of my supportive group, I have tried to stay positive and focused. I enjoy reading (mainly historical biographies) and have read over 60 books since July. I am also a baseball fan and enjoy listening to Bruce Springsteen and Frank Sinatra.

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

• Enjoying life to its fullest when you are able. My mother used to say "When you have your health, you have everything". I think I realize that now, there is a lot I want to do and hopefully I will be able to do some things in the near future.

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?

• Pat's Myeloma blog
• Planet Myeloma
• IMF site
• Myeloma Beacon
• Leukemia(LLS)

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