If you would like your story of that of a loved one posted on MM for Dummies, copy and paste the questions below in an email and send your response to me at phil at cancerkicker dot org. Thanks for your willingness to share your story for others to grow in their knowledge of Multiple Myeloma!
Where were you born and raised?
Where do you currently live?
When were you diagnosed and how old were you?
Did you know what MM was prior to diagnosis?
Is there anyone else your in family with MM?
What led to your diagnosis?
How many times were you referred before actually being diagnosed?
- Had my annual physical late September 2012. Blood work normal other than slightly low RBC. Doctor said not to worry. When I told him about back/hip pain he said it was a strained oblique and off I went to physical therapy.
- 2 months later I couldn’t even sit in the car. Back to the doc next day. More blood work showed elevated protein levels and X-rays discovered bone lesions. Right iliac bone was disintegrated. That was thanksgiving week. Week after had bone marrow biopsy that confirmed MM diagnosis.
Where have you received treatment?
- Started treatment at Mt. Sinai immediately
Explain your treatment history:
- 1 cycle complete VCD (Velcade, Cytoxin, Dex)
- 2 cycles complete CRD (Carfilzomib, Revlimid, Dex)
- Start 3rd CRD Friday 2/15/13
Why did you or your doctor choose a specific treatment?
- I subscribe to the “Mel Stottlemyre theory” of MM. I will be the best patient I can be and my doctor will be the best doctor he can be. If we both play our roles, we will beat this thing. I work with Dr. Jaggannath at Mt. Sinai. I am confident that I am in the best possible hands. So far – over 50% response/remission. M Spike down to 1.02 from 2.76. So…it’s working.
What has been the side effects of the different treatments?
- Very fortunate that there have been very few rough days. I did have the flu once which kicked my rear. Zometa (once a month IV) is rough as well. Two days after I get the chills and the shakes pretty fierce. Other than that – business as usual.
What has been the hardest thing about your MM journey?
- It’s always there. There isn’t a day that goes by that I don’t have cancer. I feel great. The further I get, the more active I am. I am at the gym. Elliptical – light weights. But no matter what, no matter how great I feel, no matter how much love and support I get (and I get a ton of it) I still have cancer and that will never change since there is no cure for MM.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
- Trust your doctor. If you don’t – get one you trust. Find the absolute best and follow his/her directions.
- Find friends. I have found friends from blogs, twitter etc that I can email and give and get support from. Nobody knows what you are going thru as well as someone else going thru it.
- You are different. Averages mean nothing. Believe you are an outlier. Everyone with MM has a different experience and it presents itself differently in everyone I meet. One experience does not necessarily translate to another. There is no cookie cutter MM
- Don’t stop living.
How have you been able to stay positive and encouraged in your MM journey?
- Belief. I believe I am an outlier. Family, friends, writing my blog. Don’t ever lose you sense of humor.
- Also – don’t stop. I haven’t missed a day of work. I coach basketball and soccer for my kids. I go to the gym. Life keeps happening. Stay busy. If you stop living before life stops you are already dead. Show cancer that you won’t back down! One more thing – love others harder than you have ever loved them before. Time is precious. Make the most of every moment. Wife, kids – spend every moment together and hug them every chance you get.
- OK one more: Mt Sinai. The nurses, the doctors, even the people that check you in are the nicest, most compassionate people. It makes a world of difference when you surround yourself with positive, nice people. These people aren’t there to do a job or go to work. They really care.
After being diagnosed… What perspective was changed the most?
- Milestones. I used to measure them in “firsts” now I measure them in “lasts” as in this wont be the last…maybe “nexts” is a better word?
- There is a reason cancer picked me. It’s because I am strong, relatively young and healthy. It is my job to fight cancer for all of those that aren’t strong enough to fight for themselves. I feel a responsibility to help others remain positive and to occupy cancer enough to allow others to live another day. Cancer can’t fight us all at once, right? Let me occupy some time and give others a rest.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
What MM sites or blogs had you found good information from after diagnosis?
- Matt vs Myeloma
- (My own) bradstrong.wordpress.com
- TWITTER – the best resource I have found (bradstrong-@bradcoustan)