Southern Pearls Rock Cancer Kicker, Dominate MM

Riley is not only fighting cancer like a girl, she is DOMINATING! Last Friday she hosted the first ever Cancer Kicker event in the south (Rock Hill, SC) and by the looks of all the pictures on Facebook, everyone had a blast.

This was third and final Cancer Kicker Event this year. I cannot tell you how thankful and I am for the folks who stepped up to the plate to grow awareness for Multiple Myeloma and raise funds so that one day everyone will get an opportunity at the game winning kick!

You can keep up with Riley and her continued efforts to dominate MM by going to the Southern Pearls Cancer Kicker Fan Page on Facebook.

P.S. Many Thanks to all that showed up last Friday and to McHale's for hosting the 1st Southern Pearls Cancer Kicker Event!

Thanks Frank

Yesterday was my hardest day yet. I was extremely tired and had a bad headache. Not the ideal state of mind for a national syndicated interview. So when I got a call from Frank Beckmann's administrative assistant, I did what any other person who wants Multiple Myeloma to be a household cancer name would do, I picked up the phone.

So I actually did more than pick up the phone. I allowed Frank to interview me about my journey with Multiple Myeloma; literally the first full day home after my 2nd Bone Marrow Transplant (who does that?!?!?!?!). Frank and everyone at WJR involved did such a wonderful job. You can listen to the interview online right here: http://www.wjr.net/Article.asp?id=1867064&spid=34613

As mentioned on the interview. I will be moving away from blogging as I focus on gaining my physical strength back. The Cancer Kicker Foundation (CKF) will still be pushing forward so more updates about how I am doing will be provided (most likely by Zak) there at http://cancerkicker.org. You can help get the Cancer Kicker Foundation off the ground by buying some dominate stuff at http://dominategear.com

Addendum by Cassie:
Check back periodically, folks. I plan to pick up the posting slack while Phil is on the mend.

Myeloma Mondays #12: Deborah from Tiburon, CA

Where were you born and raised?

• Cleveland Ohio

Where do you currently live?

• Tiburon, California

When were you diagnosed and how old were you? (example: 8/8/08 - age 28, IGG Kappa)

• October 31st, 2009. 58 years young

Did you know what MM was prior to diagnosis?

• No.

Is there anyone else your in family with MM?

• No...I think my mother may have had it.

What led to your diagnosis?

• I had been sick for over a year. I went to every doctor I could think of, but everyone turned me away or passed me on to someone else. My Obgyn finally gave me the right test, and told me I would have to see one more doctor to see what was wrong with me. She knew.

How many times were you referred before actually being diagnosed?

• At least 7 times.

Where have you received treatment?

• Kaiser Hopsital in San Rafael, Ca.

Explain your treatment history

• 11/2009 Velcade 2x weekly.
• 11/2009 Orivia (sp?) 1x monthly
• Starting Autologous transplant 5/2010

Why did you or your doctor choose a specific treatment?

• Because I have chromosome damage.

What has been the side effects of the different treatments?

• Dizziness, confusion, nausea, vomiting, dirrarhea, loss of appetite, weight loss (yay).

What has been the hardest thing about your MM journey?

• Having to go to the hospital 3x a week. It's like a job!

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

• Stay positive, find out what works for you, and accept the help you need!

How have you been able to stay positive a.d encouraged in your MM journey?

• Support from loved ones.

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

• That people who don't find an answer, should go back and find one!

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

• Besides being raised in a smoke-filled home, no.

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

• This one!

***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

Myeloma Mondays #10: Chuck from Tampa, FL

Where were you born and raised?

• All over the place. My father was in the Air Force. I was born in Enid Oklahoma. I lived in Florida, The Phillipines, Japan, Ohio, Indiana, New Jersey and Illinois all by the time I was 18. I call Illinois home.

Where do you currently live?

• Tampa, Florida

When were you diagnosed and how old were you?

• Diagnosed 11/19/2008 - age 46 - IgG Kappa

Did you know what MM was prior to diagnosis?

• Heck no!

Is there anyone else your in family with MM?

• No

What led to your diagnosis?

• broken clavical - disc golf

How many times were you referred before actually being diagnosed?

• 0

Where have you received treatment?

• Moffitt Cancer Center, Tampa, FL
• 11/??/2008 - clinical trial - CVDD (cyclophosphomide, Velcade, Doxil, Dexamethasone) + monthly zometa
• 3/2009: Completed 6 cycles of CVDD
• 6/2009: Autologous Stem Cell Transplant
  We achieved very good partial response and am on no maintenance therapy.
  Initial IgG - about 5900
  Initial M-spike - 3.9
  High Protein in Urine

  After Induction Therapy
  IgG -normal
  M-spike - 1.3
  High protein in Urine

  After SCT
  IgG - Normal
  M-spike .2
  Urine protein - normal
  Freelite ration - normal

  
  So, currently no maintenance therapy with the exception of Acyclovir 2x day.

  
  All numbers have been stable since transplant. When the numbers start rising again (by a factor of about 25%) my Doc will recommend to resume treatment.

  Right now, quarterly testing- Urine/serum/..

Why did you or your doctor choose a specific treatment?

• I believe in clinical trials. All the drugs in the trial are already approved for myeloma treatment. I'm relatively young and with two teenage boys, this combination is relatively well tolerated which would allow me to continue to work and care for my boys.

What has been the side effects of the different treatments?

• CVDD was well tolerated. I had no nausea, some fatigue, some hair loss. The Dexamethasone was not pleasant. I became irritibable and not too pleasant to be around when "crashing". But listen to my girlfriend and that's my normal nature! So, I don't know :) No issues with the Zometa.

What has been the hardest thing about your MM journey?

• It's hard to tell if the initial shock and discouraging results of initial internet searches regarding what to expect, was harder than living with this disease and never knowing if the next test will bring bad news.

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

1. Stay positive.
2. Don't believe everything you read.
3. Get involved. The International Myeloma Foundation, The Multiple Myeloma Reasearch Foundation, The Luekemia Lymphoma Society are great resources for all types of help.
4. Stay informed.
5. Question your Doctors about anything and everything until you are comfortable.

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

• Stick my head in the sand and pretend I don't have Multiple Myeloma! Now that's not too realistic, I know. Continue to work, raise my children, love my girlfriend, maintain hope that cure will become available while I'm still around to get it.

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

• Living with the knowledge that most likely I'll die earlier than I assumed.

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

• Yes. Cornfields as a teenager. I remember running behind the mosquito fogger (DDT I presume) as a child.

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

• MMforDummies, Nicks Myeloma Blog, Living with Multiple Myeloma, IMF, MMRF, 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

Myeloma Mondays #7: Liz from Chicago, IL

Where were you born and raised?

• Chicago, Illinois

Where do you currently live?

• Cicero, a suburb of Chicago

When were you diagnosed and how old were you?

• I was diagnosed Feb 8, 2010, I am 52 years old

Did you know what MM was prior to diagnosis?

• Never heard of it before

Is there anyone else your in family with MM?

• No, but my grandfather had leukemia back in the 1960s

What led to your diagnosis?

• I was out of breath back in November 2009. My primary care physician kept trying different remedies (for reactive lung disease, asthma, pernicious anemia), looking for the source of my symptoms.

How many times were you referred before actually being diagnosed?

• Twice: to a pulmonologist (who took CBC and found severe anemia) and two weeks later to hematologist/oncologist.

Where have you received treatment?

• I'm receiving treatment at MacNeal cancer center, in consultation with doctor from Rush Presbyterian.

Explain your treatment history

• 2/22/2010 - will receive my first chemo treatment. 40 mil of Dexamethasone, IV of Velcaid, and something to promote red blood production.
  

Why did you or your doctor choose a specific treatment?

• They are consulting with a group before making decisions.

What has been the side effects of the different treatments?

• I will let you know. Hopefully, they will be minimal to none.

What has been the hardest thing about your MM journey?

• Dealing with the shock, and insensitive HR personnel that thought I was making a big deal about skin cancer. (I applied for FMLA and short term disability to cover days off after my sick/vacation time runs out.)

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

• Keep going back to your doctor if you are not satisfied with their off-the-cuff diagnosis; stay in close communication with your doctor.

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

• Most of the time, so far. I lost my positive focus after talking to HR.

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

• I realize how important it is to look for the positive side of everything and to remember to laugh at the funny things.

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

• No. But my grandfather used to apply insecticides by hand to his crops, using a cloth bag.

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

• MM for Dummies
• Wikipedia

Cycle #5: Much of the same...

Just a quick mid-cycle post. After I finally decided to have folks pray for me following my 12 day bout with projectile vomiting and 6 days of not being able to hold down even a teaspoon of water, my body has bounced back. I can't explain it, nor can the Docs. I was literally heading towards hell and no drug could stop it. Isn't it funny how many people only turn to a hirer power when things get really, really bad. I am hoping my kids don't follow suit when they are older and only call me when they need bailed out!

News on the transplant #1 front and other happenings:

• All my tests, labs, doc meetings, cytoxin infusion, and harvest are on the books. Cells will be pulled mid-Feb
• High dose chemo and transplant still not scheduled; waiting on Cycle #5 results
• I purchased Rock band for the Wii and will not break it open until post-transplant. Video games is totally out of character for me...thanks cancer for allowing me to be a kid again.
• Maize and Blue hair dying will probably happen the first week of February!
• Cassie is still holding up like a champ, but her belly is getting huge! 3 more months until baby #3 is here!

Praise:

• Cassie for putting up with my dex ideas and being somewhat of a single parent during this time
  
• Family for watching the kids during my infusion, getting genetic testing done and all that other good stuff
• Friends for continuing to bless us with at least two meals a week...unbelievable
• My new MM friends who unfortunately are given the horrible fate of MM, but can join the hope train with us
  
• Michigan Faithful for continuing to show your support
• Dr. J and BN for providing the best medical support and growing friendship
• ..and God...I'll try to call your name out on some of the high moments, although it's easy to forget
  

Two Months of our Lives...Gone

We just eclipsed the two month mark since I started my chemotherapy in route to kicking Multiple Myeloma (not Melanoma)for good. I also finished up Chemo Cycle #3 today and I am still doing great since the bout with projectile vomiting.

I am thinking it's time the Cassie and Phil Plus Cancer Video Blog series return tonight (click here to watch one of the first episodes back in October)....does anyone else agree? (Amy L. - you owe me a comment and I think I owe you four more bracelets).

Also, leave a comment on when you think I should unveil my dyed hair:

(1) After Christmas...idoit! But before New Year's.

(2) Dude, you should totally rock it for New Year's

(3) What?!?! I didn't know you were going to dye your hair!

(4) If you were tough you would just stop talking about it and do it now.

Multiple Myeloma for Dummies Helps Build Awareness in Every U.S. State and 50 Countries Since Phil started chemo only 2 Months Ago. Here are some of the numbers:

• 14,688 visits to MM For Dummies Blog
• Over 200 visits per day, 30% being New Visitors
• Distributed over 1,500 Cancer Kicker Bracelets (still some available)
• 5 News Articles & Some Air Time at WTKA

Check out below to see just where the traffic is coming from:

Unbelievable

We are humbled by the support and awareness MM has gotten over the last week since I started treatment last Tuesday. We had over 2,200 visits to MMForDummies, from 46 states and 23 countries...all in one week! Below is a quick glance of the growing awareness to a disease that will affect more than 30,000 individuals in the next year, and many more friends and family members. But together we can KICK IT!



















There are still plenty of Cancer Kicker Bracelets! Click the donate button to get started. Thanks Everyone!