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 #16: John from Oregon

Where were you born and raised?

• I was born in San Francisco. I lived in California until I was 32.

Where do you currently live?

• Hood River, OR for the last 31 years.

When were you diagnosed and how old were you?

• 12/7/2007 – age 61, IGG Lambda. BMB showed 26% plasma cells, IGG was 6600+ with an M-Spike of 4.5

Did you know what MM was prior to diagnosis?

• No.

Is there anyone else your in family with MM?

• No.

What led to your diagnosis?

• Routine physical prompted by anemia, which was detected intermittently at Red Cross Blood Drives over the course of the two previous years.

How many times were you referred before actually being diagnosed?

• None, I received a definitive diagnosis within 10 days of the first blood test.

Where have you received treatment?

• Initial oral chemo prescribed by a local hematologist from Mid-Columbia Medical Center’s Celilo Oncology.
• Then, I went to the Seattle Cancer Care Alliance for a Stem Cell Transplant.

Explain your treatment history

• 01/2008: Started Thalidomide/Dexamethasone
• 06/2008: Completed 5 cycles of Thal/Dex
• 07/07/2008: Cytoxan, Etoposide, Dex – pre-transplant chemo
• 08/25-08/28/2008: High dose Melphalan -- Autologous Stem Cell Transplant
• 08/28/2008 – 03/2010: In remission without any treatment

Why did you or your doctor choose a specific treatment?

• My wife and I did our own research on treatments. Once I began the thal/dex, I asked for a referral to consult with the SCCA. I made the SCT decision independent of my local oncologist. The SCCA has an excellent reputation. I chose to do the SCT while still healthy.

What have been the side effects of the different treatments?

• Peripheral neuropathy from the thal/dex treatment continues to annoy me. I also experienced constipation, fatigue, and emotional ups and downs from these oral drugs.
• Nausea, diarrhea, joint pain, hair loss, chemo brain, fatigue, profound indifference plus aversion to food and drink, from the SCT. Most of this came and went within six weeks; the chemo brain still occurs intermittently.

What has been the hardest thing about your MM journey?

• It disrupted my wife’s and my life, but we rolled with it. For me, it has been an adventure. I am lucky to have no bone or kidney issues – yet.

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

• It is a process. Educate yourself about the disease. There are many good options for treatment. Don’t despair, the survival statistics trend in our favor due to incredibly dynamic research initiatives.

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

• Educational resources such as the IMF, MMRF, and LLS are invaluable. In addition, I highly recommend joining a multiple myeloma support group. We are the real experts.

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

• This confrontation with my mortality led me to discover deeper levels of tolerance for others and myself. I am at peace with the disease.

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

• My Dad was an automotive body and fender man. My Mom was a nurse.
• I’ve played golf all my life – a lot of golf. Also, I worked as a greens keeper for seven years.

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

· Jon Siegel’s Multiple Myeloma Blog was a thorough and positive recounting of his SCT. For whatever reason, it stopped abruptly.

· Beth’s Myeloma Blog does a good job of walking us through her SCT experience. She later facilitated everyone’s access to other bloggers with Planet Myeloma. For humor and social insight, Because I Said So; Margaret’s Corner for integrative and alternative medicine including cat therapy; for imaginative prose I like Lisa Ray; actually, I read them all. Everyone’s story fascinates me.

*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

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?!?

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!

M-Spike down a half a point!

After seeing my M-spike on the rise for 6 months I was ecstatic to find out that it has dropped to 2.4 in just over 6 weeks (was 2.9). I am starting to think that coffee accelerates myeloma! I gave up coffee for lent, so in between blood tests I didn't have one drop of coffee.

Also, my IgG is at 3100, which is consistent with my last test. I haven't gotten the full list of results, but the numbers that Dr. J seems to always focus on seem to be coming back more on the positive side; which I guess is considered more on the negative side in terms of disease management :)

Yay.

Got CRAB?

So to dove tail on Cassie's last post I will provide you some other valuable data from our appointment with Dr. J.

I asked Dr. J and our wonderful P.A. what is going to lead me into the "Oh sh** we better start doing something about this disease" category? I wasn't that blunt, but all be honest with my MM readers and say that's where my head has been of late; Cassie's too.

Dr. J first said that the standard protocol is to observe the C.R.A.B. test. My fellow MM blogger Don describes this better than I will ever in one of his blog posts if you want the details. In dummy terms that I can understand is that the CRAB test fails if your bones or kidney start to take a beating; or you show signs of anemia.

Being the numbers guy that I am, the whole CRAB test is helpful, but what about the M-spike, IgG and Light Chains that get so much attention? So I pushed Dr. J to tell me at what IgG levels do we start to say: "It's time to drop a nuke on these guys." In MM For Dummies language the nuke is a simple translation for some rounds of drug therapy to reduce the disease, followed by chemo drugs and the final step of a stem cell transplant; in other words, reduce the suckers, take out the good guys, kill all the suckers and good guys, replant the good guys, hopefully the good guys reproduce and the suckers stay at bay.

Dr. J's answer was 5,000.  Currently my IgG is at 3,000 and showing a steady climb. I plan on pulling all my data points (3 or 4) and charting them for our readers, but I think at diagnosis I was around 1800-2000, but I am not sure.  Assuming a linear progression this time next year I'll be at 5,000. The tricky part is that Myeloma runs its course differently in everyone, so the time and more data will more accurately paint a picture that we can react to. 

In the meantime, we are considering a trip to Little Rock, Arkansas for a week's stay in one of the Center's of Excellence for Myeloma research and treatment resides. Several signs have pointed to Arkansas, so now I just need to call my insurance and confirm that I won't have to sell my first born to pay for an additional opinion.