Down, Down, Baby!

The M-spike is almost DOMINATED! For the first time in almost three months and six rounds of aggressive chemotherapy later, my M Protein has gone from 0.2 to 0.1. I was starting to get pretty irritated from hearing 0.2, 0.2, 0.2, 0.2, 0.2 while aggressively treating the disease through consolidation therapy following two autologous bone marrow transplants this summer.

I realize everyone is different, but most of the young people I follow with MM have achieved CR (Complete Response) following induction therapy that was much less aggressive than mine, followed by a single autologous transplant. We have found that because my disease was advancing slowly, it has followed that same trend on its way out of my body.

To be transparent, this news brings a big sigh of relief. I had a number of folks remind me to remain patient and that a M-Spike of 0.2 is great, but when your goal is CR and you have been taking aggressive therapy for 4 months with no signs that the disease is diminishing; it can start to weigh on your emotions especially when you are physically being taken down to the weakest point in your life.

Thanks to everyone who has remained so supportive throughout this journey. We cannot thank you enough for the meals, the words of encouragement and other support that has come in various forms. A special thanks to Daniel for challenging me to believe that God has healing for me and wants to dominate this disease. My prayer for the entire week was to receive this word and live with an expectation that my M-spike would be lower.

Where to next? Well 0.0 of course! I begin maintenance therapy which takes me from three drugs to one; and the one that I will be on is only 60% the dosage. We will be checking the M-Spike again in 5 weeks.

I'll end with a picture of Coach Hoke and me after the Washington Kick. Watch out Myeloma and watch out Ohio!

Quick Update: Cycle #5

Cycle #5 is almost in the books, which means I am headed to an off week of chemo! I have gotten quite used to drinking chemo on B1 as I have tallied 50 infusions to date over the last 14 months.

With the M-protein holding at 0.2 since my 60 day post tandem transplant #2, I am taking to exercise and reading to keep my mind and spirit right. My muscles have disappeared over the last few months which is a painful reality that I need to get over. It is really starting to motivate me to Dominate 2011, a campaign that will be all about returning my body to top physical strength so it will be ready for any twist or turn in the future.

The kids are a delight right now, Cassie is still a rock and looking hot with her new lighter highlights and I am asking Santa for a reduction in the M-protein this year!

Thanks to everyone for the continued encouragement and prayers as we finish out the end of the year.

6 More To Go

Today I will go in for my 40+ chemo infusion at UMCCC. I started this journey last October which included 7 Cycles of a 4-drug combination, followed by two bone more transplants and finally 4 cycles of consolidation therapy, with the goal of putting Multiple Myeloma to its knees and eventually out of sight by modern technology.

The technical term for out of sight is "CR" or Complete Response. There are many indicators that are used to track the disease and the simplest for those who secrete it, is the M-Protein. My M-protein at the start of treatment was 3.0 and has been beat down to 0.2 with the two bone marrow transplants and heck-of-a-lot of chemotherapy. The goal is still 0.0!

Today I will start the count down to the end of my 4 Cycles of consolidation therapy which is a three drug combination. I will finish my consolidation almost exactly on my first daughter's 3rd birthday, which will be quite emotional. Thank you to everyone who continue to pray and pass positive thoughts to us during this journey.

For kicks, here's a video of Cassie and me after our very first week of chemo: http://mmfordummies.blogspot.com/2009/10/video-blog-week-1-in-review.html

1 Year of Treatment...DONE!

On October 6th, 2009 I took to the journey of putting an end to Multiple Myeloma in my body. I was filled with hope from what I was hearing out of Little Rock at UAMS leaning heavily on all the great research and data they have compiled through Barlogie's Total Therapy approach for dominating MM. Although my bones were starting to fill with Multiple Myeloma and my M-protein was on the rise, I was very hopeful that a Total Therapy-like approach at UMCCC in combination with my Low Risk gene expression results, that I would have a great chance at getting to Complete Response (CR), suppressing the disease for years by using maintenance therapy. And the hope, which still remains, is that if I can beat it down to ground zero and create a hostile environment that is unwelcoming to MM with the maintenance therapy, maybe the Multiple Myeloma would pack its bags forever and not return.

So one year later, 7 cycles of four drugs, followed by a tandem (back to back) stem cell transplants this summer and now finishing up my 2nd of 4 cycles of consolidation chemo, I feel the hope is being realized, but not fully. I still have a M-Protein of 0.2, which has known to be eliminated as the transplants "take" and the additional chemo post-transplant sends the Multiple Myeloma its knockout punch. So we still have a possible couple more months of watch and wait.

So when will the Domination be achieved? After my 4 cycles of chemo I will start tapering down into a maintenance mode that will allow my bone marrow to begin to make a comeback and return to more normal levels. Although, my bone marrow has been a rock star in terms of regaining strength and producing blood cells just on the low side of the normal range. The recovery from this treatment I am hearing will be years. I was told that I will not be revaccinated until at least another year, any time before that they vaccine may not "take".



Lastly, the Ann Arbor DomiNation was in full effect last Sunday. It was such a joy to see my mother, two of my sisters and Cassie run in their first 5K ever! They finished in the Big House, the same place where I finished just a year prior as we set out to dominate Multiple Myeloma. I am very thankful and proud of my family in all the ways they look to support me. They have been a blessing through what many would call a curse.

Down, down... Baby!

The results are in and my M-protein was cut in half and down to 0.2. This news brought some relief. Although I carry the spirit of domination in almost every and anything I do, having Multiple Myeloma can present doubts and fear at any given turn. Although I rarely succumb to those fears, I cannot help to think that the reptile part of our brain can do a dandy job in interfering with our hopeful hearts, prayerful mind and souls and even sound data/research.

The reason why I am so ecstatic about these results is because I have not had more than a 0.1 drop since halfway through my low dose chemotherapy. For those following along since I started my induction chemotherapy back in October 2009, after my 4th cycle of RVDD my descend to a Complete Response (CR) was halted by very slow decline that even with two more cycles of the four drug combination and a hit of Malphalan (i.e. BMT #1) could not crack my M-spike much. Here's a beautiful graph following my Cycle #5 Results.

Following 7 cycles (wow that was a lot) of RVDD, my M protein went from 3.1 to 0.6 (Good Partial Response) and most of the other MM indicators were in normal levels except for the plasma cell percentage in the bone marrow biopsy and the light chain ratio. Here are the results following each BMT:

• Post BMT #1: M-protein down a tenth of a point to 0.5, bone marrow biopsy normal!
  
• Post BMT #2: M-protein down to 0.2, bone marrow biopsy results TBD

Honestly, I really didn't know what to expect for my Day 60 post transplant #2 results. I remained hopeful that I would be at zero, with the reality that my disease (all Myelomas are not created equal) is more of a slow progressing, which could explain the slow decline of the disease.

Lastly, our boy Nick out in L.A. continues to remind and reassure us that often times a CR is not realized until 100 days after transplant or even until consolidation (post transplant chemo) has begun. We also know of one particular patient that has followed the same protocol as me and did hit CR until a four so months after his second transplant. So with more low dose chemo guns poised to dominate, I am confident that after a couple of rounds the M-spike days will be numbered.



Quick update on the domiNATION! We have had a couple more people sign up, so if you want to join forces with any of the Lead Dominators, post a comment on the Cancer Kicker Facebook Fan Page. Currently we have individuals, families and even Corporations that are coming together to raise up the domiNATION. Here are some of the locations:

• Chicago
• Midland (MI)
• Belding (MI)
• West Coast (Cali)
• South Carolina
• Columbus
  

Back to Oncology...Thanks BMT!

Yesterday I completed my fifth bone marrow biopsy and it didn't come with a prize, although I am holding my breath for a decrease in the M-Protein come end of week once I get my results back from UMCCC.

Today we officially transitioned back to our beloved oncologist and his staff after working over four months with a great team in Bone Marrow Transplant (BMT). Hats off to them as I stayed infection-free the whole time under their care and supervision. Including the last couple of months being completely drug-free...hooray!

As for returning back to Dr. Jakubowiak (J), I am very excited. I could not ask for anything more from a team so devoted to both patient care and finding a cure for everyone with Multiple Myeloma. I hope to share more about Dr. J as I continue to feel better/stronger because he is just a monumental person and our hidden gem here in Ann Arbor. Although if you talk to any of his other patients, they are in on the secret as well.

So by the end of the week we will have another checkpoint. Two weeks from today we jump off into the deep end again and return to chemotherapy.

On a powerfully awesome note, the domiNATION is taking off. I fortunately don't have the capacity to be too involved, so fortunately volunteers are stepping up and running with it on their own. The mission is inspire others affected by cancer and other life-junk, raise awareness for Multiple Myeloma and raise funds to accelerate the work Dr. J is doing at UMCCC to find a Cure. There is no reason why the research coming out of UMCCC can't lead to a cure for all MM patients.

If you would like to learn how you can get involved in the domiNATION, click here. I'll be creating a blogpost on this topic in the near future.

The Gem....continued :)

I just received results from my recent bone marrow biopsy that showed my plasma cells are at 2.4%, which I was total is in the normal range (less than 3%). This is great news! Now it's time to complete operation domination by eliminating my body of the M-Protein. Sucks to be you Myeloma, Hasta-la-Never.

Below I am dominating Myeloma on my porch with the wicked new dominate shirt from dominategear.com. Thanks Zak for creating these shirts, taking orders and shipping already 100 of them out!

Thank you so much to the faithful blog commenters from the last post. I love comments and I listen! So per the request, below are some photos of Ruby over the last 6 weeks. She is now 7 weeks old!!

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.

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!

Cycle #4: Test Results are in!

No graphs this time, just more good news. Of the numbers we are tracking and that are closely tied to MM getting dominated, all are trending down...which is the direction we want them to go!

The M-protein is down to 0.8 (3.0 to 1.9 to 1.2 to 1.0, now 0.8). If it falls another half a point I will be in Very Good Partial Response (VGPR), which would be outstanding heading into my first, of possibly two transplants. 

For those MM enthusiasts out there:

• IgG continues to drop, it's now 1120 (was 1350)
  
• Kappa free light was 20.1, now 10.6. The K/L ratio went from 100 to 50.
• Total Protein is 6.6...Perfect! (Was 8.2 at diagnosis which tipped off my hematologist)

People continue to ask how the treatment is going and I can honestly say that going through hell in cycles #1 and #2...read the old posts if you don't remember, has made Cycle #3 and #4 seem like cake. I am now onto #5, which seems to be following suit! 

So what does Phil want to happen next? 

1. I want to see my M-protein to continue to get dominated. What would make me REALLY HAPPY is to see it at 0.3 after chemo cycle #5, but I would probably be pumped to see it at 0.5 as well. Those numbers would encourage me to go after another round of chemo to try to knock this thing out of the park even before my first transplant.
2. I want to see my kappa to continue to drop. These light chains dominate the kidneys and are a key indicator on how the disease is doing. The chemo is working a number of the kappa, so I just ask that it keep receiving the domination!
3. I want to have peace about when to start my first transplant and peace about whether or not to do a second one. There are financial ramifications to two transplants which don't need much discussion on our blog, but just a reality that we can't avoid. One important note is that it seems that both my oncologist and BMT doc may agree to harvest and collect my stem cells after Cycle #5. I still have to do a little more research to understand whether it's better to reduce the M-protein before collection or not. Unfortunately the chemo bombs affect the good bone marrow too, so the docs want to make sure they get enough collection for two transplants. Being young, I don't think that will be a problem and I still need to trend my blood counts (white, red, platelets) to verify that my counts haven't really gone down much during treatment. 
4. I want my Wolverines to compete for a Big Ten Championship again.

Thanks everyone for the prayer, support and such kind words! There's nothing but good news following Cycle #4 and we expect in three weeks when sharing results from Cycle #5 it will be nothing but the same.

Still kicking it... Cycle #3 results are in

The goal of the RVDD trial that I am participating in (got the last spot!) is to prove scientifically the effectiveness of a four drug combination (Rev, Velcade, Dex, Doxil). Thanks to all the new MM friends I have connected with through this blog and Facebook I have learned that today's standard (or most common practice) to treat Multiple Myeloma is using Revlimid, Velcade and Dex (steroid)...commonly known as RVD. Depending on the age, effectiveness of the chemotherapy, patients may then move to transplant (most like auto, i.e. your own cells) and some docs are pushing a tandem (back to back) bone marrow transplants in hopes for an even deeper remission.

So there's some background, now on to the results after completing Cycle 3 of 4 (or maybe 5 and 6). I have another graph for you! This time I have charted the M-Protein (a.k.a. M-Spike)that has been floating in my blood for the last 16 months. The goal with any chemotherapy or transplant is to knock down the M protein to zero. M-protein is a key marker for MM and a normal Joe has zero. The thought is that if you can get rid of the M-protein and it doesn't return after 5-6 years...maybe it won't return. That's the game winning kick we are going for...a deep remission and possibly a Cure.



Since starting treatment my M protein has been on the following decline:
Baseline: 3.0
Cycle #1: 1.9
Cycle #2: 1.2
Cycle #3: 1.0
Cycle #4: TBD

I learned on my last visit with Dr. J that a GPR (Good Partial Response) is 50% reduction in the M Protein. Hooray...I got there after Cycle #2! To achieve VGPR (Very Good Partial Response), my M protein will need to reduce to 0.3. I think the staff (and me) would like to see VGPR before moving onto bone marrow transplant (BMT). Research is showing that the more you can kick the M protein to the ground, the better long term results. The transplant should whack any remainder M protein, but I would prefer we whack it down with chemo prior to transplant to ensure the bad guy is gone post-transplant.

So what this means is that they may actually pull my stem cells after Cycle #4 (while my bone marrow is still doing okay) and then move on to a 5th and 6th Cycle of RVDD to continue to kick away in hopes to get that M-protein as low as possible; if not gone. I am in agreement with this approach. I don't want to rely on my transplant (or two) to bring down the M protein when we can continue to kick its butt with RVDD.

On a side note...I am sporting a beard and I like it. In a few weeks I will be dying my hair in anticipation of my transplant. This is my one opportunity to go from middle class, midwestern Alltel look-a-like to Rockstar/Poser. Isn't cancer great?!?

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:

Puking Stan is Back, but the M-Protein is Waning

It's hard not to smile through the vomit after seeing the results of my slowly-but-surely-being-vanquished M-protein. The M-Protein can be a key indicator of the progression of myeloma, but not always. I plan to insert a graph of my M-protein over the last 15 months once my stomach settles down. Since starting chemo, here is a quick run of the numbers:

Day 0 = 3.0
End of Partial Cycle #1 = 1.9
End of Full Cycle #2 = 1.0
Cycle #3 = Hopefully start on Tuesday, November 24th
Cycle #4 = Hopefully start 3 weeks after that
GOAL = A Big Fat Zero before bone marrow transplant (possibly tandem)

So the bad news is that Tossing Cookies Stan is back in full force. I was hoping for a decrease in the death grip on my bowels and stomach but so far... no dice. I thought I was back on the fast track to my wonderful vegetarian diet, until I ate a baked potato with the skin. I probably should mention that I had roughly 8 graham crackers, 2 apple juices and 2 cranberry juices in the cancer infusion center this morning while I was filling up on 2 liters of saline via IV and catching up with an awesome friend known to most as Bal; short for Rockin' Andy Balazer. Long story short, I saw it all again a few short hours later. Good times.


Stan Puking His Guts Out

Some more good news for Multiple Myeloma Awareness. The Michigan Daily's featured article (here's the first story they broke over six weeks ago if you missed it) leading up to the match up between us and that team down in Ohio will include some shot outs from me as I try my best to explain the definition of a Michigan Man, which is the term used by the Michigan faithful to define the character of the Leaders and Best. There's just something different about wearing the winged helmet and playing in the Big House that is really hard to put into words....it's like trying to explain to your family what Multiple Myeloma is. Rimshot! Thanks to the awesome Courtney for reaching out. Be sure to check out Friday's Michigan Daily for the article.

Take that IgG! Domination continues...

After having spent a number of hours in urgent care and a couple of extra trips to the infusion center for hydration and additional blood work, I can say all that is overshadowed by the results that are starting to come in following Chemo Cycle #2. I have already explained IgG a little in a previous post, but basically everyone has some level of IgG, which are antibodies that karate chop bad guys in the face. Unfortunately for my body, I have way too many IgG's who aren't doing much in the way of karate chopping any bad guys. As shown in the beautiful excel graph below, we can now say I am back to normal, for IgG levels that is. We will hear either tomorrow or Friday where the M-protein/spike is at (i.e. on its knees awaiting a final blow!).



I feel like everyone deserves a part of this good news because we have had an army of support! From meals, to people dominating bracelets, to taking care of our kids and to praying for us when we don't have the words...nor do we feel good enough or have enough energy to come up with them. So thanks to all and all a good night!

New Data Point Coming Soon...

This coming Sunday begins the 24 hour pee-pod followed by blood work on Monday. Because I am a simple guy and as the blog title states this is for dummies, the things I hope for in the results are that that calcium stays in my bones and the M-Protein stays under 3.0.  There are a lot of numbers to track, but those are the high level markers of whether or not we need to start thinking about thinking. I would rather not start thinking... :P

Roughly 99.9% of the time I am not reminded of the fact that I have cancer of the incurable variety. I think the quarterly testing makes me think about it 0.1% of my time.  Stupid tests.....Results will be in next Tuesday, Feb. 24th.  Go Blue, Phil