Funeral, Chickens and My 60 Day Test Results

What an emotional week. I am back in the saddle at home with not much energy to chase the kids around. Cassie was a champ with all three kids for four days as I flew to Florida to commemorate the life of my Grandpa George and share in family time. I was given an opportunity to speak at the funeral and share how my two grandparents, who were both only children, started something known as the Brabbs' Family which today includes 17 grandchildren and currently 10 great-grandchildren. Although I was born and raised several states away from my Grandpa George, it was made clear this past week that I am very much similar to the man he was and that I hope to be. On a lighter note, my uncle Jeff hosted my parents and me at his legit guest house which is home to three chickens (shown below) that provided some awesome breakfast (eggs) served up by my uncle Jeff.

Yesterday, I had bone marrow biopsy #5. I really don't mind them, partially because my PA at UMCCC knows how to dominate the procedure without dominating me. Those results will be on there way in a few days and will tell us what percentage of Myeloma plasma cells still exist in my bone marrow. Below is a picture of me waiting to see the BMT Doc, showing of my new watch which was given to Grandpa George for his High School Graduation at Flint Central. I am also wearing a silly band which I just learned about. I think the dominate bracelets are much cooler!

Also, I received my 60 Day (from transplant #1) test results and my M-Protein dropped from 0.6 to 0.5. This is positive because it is showing that my body is responding to the high-dose chemo (Melphalan) that I received. My goal is still to get this to 0.0 after my second transplant and some consolidation (more low-dose chemotherapy). I feel like I am at the mid-point of my treatment and I am very excited with the results although we still have a little more way to go.

On a side note, there are some really cool things going on with the Cancer Kicker Foundation as the Facebook Fan page is now over 4,o00 members and almost all 100 dominate shirts have been pre-ordered. I must say all of this work on CKF has been dominated by Zak Branigan who is such an inspiration and good friend to our family. Cassie is sporting her dominate shirt today and she looks hot for having Ruby only 6 weeks ago. Score.

Myeloma Mondays #19: Janice from Idaho

Where were you born and raised?

• Australia, East Coast

Where do you currently live?

• Idaho

When were you diagnosed and how old were you?

• Non secretory MM but only with a Bone Marrow Biopsy.

Did you know what MM was prior to diagnosis?

• Barely and I was an oncology nurse

Is there anyone else your in family with MM?

• My cousin has MGUS and it was put in remission in 2006 after taking the supplements I did

What led to your diagnosis?

• Exteme pain, inability to walk, exhaustion, trouble breathing, very low blood work, Hemaglobin of 6. Had an udiagnosed fractured spine, collapsed lungs.

How many times were you referred before actually being diagnosed?

• Once but the doctor I was seeing thought I had an overactive complaint list Trips to the ER they blew me off

Where have you received treatment?

• Boise, ID

Explain your treatment history

• 10/2004: Started on polymva, Coq10, Immune support, Liver support and cleanse, coral calcium, Vit B, Vit D (Cod liver oil) Vit C limited
• Heavy xray therapy 10 days only
• Never took chemo, I was a retired RN with Oncology experience and what was offered I knew how deadly it could be and I also knew I had 2 feet in the grave so I declined. Stayed with my natural therapy. This is not for everyone but worked for me.
• Transplant discussed but never seriously

Why did you or your doctor choose a specific treatment?

• My doctor allowed me to try my own treatment although she did not agree she was a real gem in that area.

What has been the side effects of the different treatments?

• Radiation was terrible for me and it was nearly the end of my what little immune system I had was done in. Could only tolerate 10 days as it was so intense and thru the sternum

What has been the hardest thing about your MM journey?

• The pain, and nausea and the worry from my husband

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

• Research as much as you can. Have an advocate. Insist on taking a copy of your tests after each visit, check out alternative as well as traditional treatments.
• Become an expert yourself. Never give up!!!

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

• Prayer, Meditation, Faith, Get rid of fear (takes work) Anger and grudges helps heal your soul. The will to be calm and forgiving is as important as getting the medicine.

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

• I was pretty confused and never really thought I would die, I guess someone above gave me this serenity. Just dealing with the pain and nausea kept me occupied. Had wonderful support. I am more tolerant of others.

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

• I gave chemotherapy for 3 years but that was in the 80's
• As children we had some exposure to garden chemicals but not many

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

• Cancercompass.com
• medifocus.com
• Phil's site www.mmfordummies.blogspot.com
• www.healingcancernatrually.blogspot.com
• www.healingcancernaturally.net

*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

Dominate Shirts NOW AVAILABLE!

The Cancer Kicker Foundation is officially launched thanks to Zak Branigan, President, and caregiver to his amazing wife who just beat an aggressive form of breast cancer. Zak spent the last week working on our first production of Dominate shirts and pushing paperwork to get us incorporated. Our first order was pretty small, so we didn't have to break the bank to get these shirts to people who really want to support the cause. Make them go fast so we can dream big!

[Click here to order your dominate shirt NOW!]

Also, for anyone who purchases more than one shirt we will also send the equivalent number of DOMINATE bracelets. Buy 5 shirts and get 5 bracelets. There is no shipping charge. The plan is to channel all proceeds to get the Cancer Kicker Foundation off the ground so we can raise MILLIONS for cancer research targeted at finding a cure for Multiple Myeloma and supporting those affected.

To learn more about CKF, check out our Facebook Fan Page!

Order at DominateGear.com!

Order Your Cancer Kicker dominate shirts online here thanks to Under Ground Printing. Shirts are only $20 with no shipping cost! Orders of multiple shirts will get free Cancer Kicker - Dominate bracelets equivalent to the number of shirts ordered. Expect two weeks for shipment and delivery. Make sure to tell us what size(s) you would like!

[Click Here to Order: DominateGear.com]

Shirt Details:

• Shirts! $20 plus shipping
• American Apparel tri-blend (NICE!)
• Unisex shirt from XS to 2XL
• 100% of proceeds support the Cancer Kicker Foundation

If you aren't ready to dominate the shirt, you can purchase dominate bracelets for a suggested donation of $2 each with free shipping. Dominate date every day with the Cancer Kicker Foundation!

Thanks, all. Keep dominating. -Phil (co-Founder and MM patient)

The Dominate Gene Lives On

There's so much both Cassie and I want to say and reflect on over the last two months, but the reality is that things have been too busy on the home front to find the time and energy to blog about it. For starters, here's me dominating as I get my heart and lung screening to make sure I am healthy enough for my second transplant, which will happen on June 23, in exactly three weeks!

I'll admit, there isn't a day that goes by where I don't think about Multiple Myeloma. Fortunately, I was wired to be a glass is half overflowing type guy so I usually channel my energy on that topic to try to grow or benefit a cause. The most recent being these sweet shirts that my boy Zak Brannigan spearheaded (check them out here!).

As for this particular week, it has been extra tough because it seems after the dust begins to settle in our lives and we feel like we have some clarity for the path we are on and where it is leading us the dirt often gets kicked back up in our eyes. This week my family lost Grampa George (no, not graNDpa). The guy was the epitome of what it means to dominate life and losing him this week made me realize that genes go much further than hair color and chin dimples...and for this I am thankful. The funeral is set for Monday and I'll be heading down with my mask on with all my family to celebrate such a great life and mourn the end of our time with him here. Here's a picture of our last time together:

Amidst all of this time feeling sad for reasons other than cancer for once, I was given a bright shining ray of hope today. Test results came back from a young cancer patient (41) who had a very aggressive form of Myeloma. After Day 30+ post-transplant, he has no M-protein....HOORAY! The MM journey brought our two families together based on the likeness of our situation (young kids at home) and it's so great to see victory on their end. Their journey is not over, but oh how sweet the news was today!

Cassie and I hope to video blog very soon. Until then, keep dominating!

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

Myeloma Mondays #17: John from Windsor, Ontario, Canada

Where were you born and raised?

• Born in London, Ontario, Canada. Raised in Essex, Ontario (approx. 20 miles from Windsor, Ontario)

Where do you currently live?

• Windsor, Ontario - with my wife and 13 year old daughter

When were you diagnosed and how old were you?

• September 2009, I was 42 years old with IgA Kappa myeloma.

Did you know what MM was prior to diagnosis?

• I did not, but my wife had an idea.

Is there anyone else in your family with MM?

• No, and there has never been anyone with cancer

What lead to your diagnosis?

• July 2008 – hurt my back at work (I’m an elevator mechanic) seemed to get better, and then by Christmas 2008 I was having pain again. By the time my birthday came around in January 2009, I was having trouble walking and x-rays and CT scan showed a tumour at the 2^nd thoracic vertebrae. I was immediately booked for surgery.
• January 30, 2009, I had a laminectomy of this vertebrae to remove a plasmacytoma of the bone which had cracked the vertebrae in two spots. See below for the rest of the story.

How many times were you referred before actually being diagnosed?

• Hard to say the plasmacytoma was diagnosed right away, but they didn’t diagnose the MM until September 2009.

Where have you received treatment?

• Windsor, Ontario & London, Ontario

Explain your treatment history:

• 07/2008: hurt my back was given pain killers
• 01/2009: removal of bone plasmacytoma
• 02/2009: first visit to Cancer Centre for consult with radiation oncologist
• 03/2009: 20 radiation treatments begin
• 03/2009: met with Hematologist/oncologist for consult
• 04/2009: bone marrow biopsy – results showed IgA kappa light chains and proteins consistent with plasmacytoma – was told no treatment necessary and to come back in November, 2009.
• 07/2009 – baseline MRI of thoracic spine booked by radiation oncologist, there was nothing remarkable so come back in October.
• 07/2009: was having some rib pain, but attributed to being back at work full-time and doing more around the yard.
• 08/2009 – rib pain still present and my legs felt off – went for some x-rays & MRI of spine – there were more lesions on my spine in various spots.
• 08/2009 – appointment with hematologist and blood work – the doc didn’t think it was myeloma yet, but she wanted to be sure…well it was myeloma, and it wasn’t confirmed until September, with the kappa/lambda ratio being 17.92 (up from 4.56 in April), and the IgA protein was 9.88 (up from 2.2).
• 09/2009: started on pulse Dexamethasone 40mg for 4 days 3 x per month (was down to only 4 days per month in December and January, then stopped getting ready for transplant)
• 09/2009: started monthly Aredia treatments
• 10/2009: started Thalidomide 50mg daily (stopped mid February getting ready for autologous stem cell transplant)
• March 4/2009 – had IV catheter inserted in Windsor and started Neupogen injections
• March 8/2009 – harvesting of peripheral stem cells (London, ON) - collected enough the first day so no more Neupogen (Yeah!)
• March 15/2009 – admitted to hospital in London, ON for high dose Melphalan (will stay in hospital until it is safe for discharge)
• March 17/2009 – Day 0 – and I get my stem cells back (transplant)
• March 23/2009 – Day 6 and finally my WBC counts are ZERO
• March 28/2009 – counts are on the rise
• March 30/2009 – counts are high enough to be discharged (whole hospital stay was 2 weeks plus ½ a day)

Why did you or your doctor choose a specific treatment?

• Chose the above treatment because the doctor said “You are young and healthy (other than the myeloma), and you only have one of the CRAB criteria (bone involvement) so let’s be aggressive, and maybe you can stay in remission for a longer period, and there may be a cure if you relapse”. Just as a note I had achieved a complete remission by December on the Thalidomide and Dex.

What have been the side effects of the different treatments?

• Dexamethasone – weight gain and bloating
• Thalidomide – a little neuropathy
• Aredia – a little bone pain, but not too bad
• Neupogen – bone pain, but I was told by the aphaeresis nurse, that means it did it’s job.
• Melphalan – a lot of gastric upset and hair loss (I shaved my head)

What has been the hardest thing about your MM journey?

• Always having a black cloud over your head…when is this awful disease going to show its ugly face again.

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

• Educate yourself, be your own or have someone be an advocate, and don’t be afraid to ask questions, it’s your life.

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

• Good support from family and friends and just keeping in mind that you can’t cross a bridge until you get to it, so take one day at a time.

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

• Knowing your life can change at any moment, life is short

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

• My mother’s family were all born and raised in farm country. I grew up in the same area (played in the ditches as a kid), and I have been exposed to different petroleum products in my work.

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

• MMforDummies and the ones on the side of your page, and Myeloma Planet.

*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 to cancerkicker at gmail dot com. I would love to share your story! -Phil