Friday, January 29, 2010

Cycle #5 Results - RVDD Continues to Dominate

For those who just started following, I have been on a clinical trial to dominate Multiple Myeloma using a four drug combination known as RVDD (Revlimid, Velcade, Doxil, Dex). From what I read and hear the most common protocol these days for newly diagnosed MM patients is RVD (no Doxil). The MMRF funded trial that I am on throws the more old school Doxil into the mix and the results from the 60+ patient study has concluded that everyone has responded to this chemo cocktail.

After Cycle #5, I still haven't achieved Very Good Partial Response (90% reduction), but my numbers are still looking solid and all of my numbers are trending in the right direction. Here they are in Non-Dorky bullet-ed form:
  • M Protein was 0.8, now 0.7 [Normal Range: Zero]
  • IgG was 1120, it's now 806 [Normal Range: 620-1520]
  • Kappa free light was 10.6, now 8.2. [Normal Range: 0.33-1.94]
  • Total Protein was 6.6, now 6.5 [Normal Range: 6.0-8.3]

Here is the data in my preferred dorky excel format for M Protein and IgG respectively:

Given the continued success based on my body's response to the chemo, it has been determined that I will move forward with a 7th round of RVDD after the current cycle I am on. The maximum number of cycles is 8, so there is an end in sight. If I end up with 8 cycles, the only issue we run into is that my transplant may coincide with the birth of Child #3. I guess the good news is the delivery room and the transplant recovery room are all connected!

Thursday, January 28, 2010

I got a match!

...and hopefully I'll never have to use it. This year I am going to try my own cells and I hope it takes forever!

UMHS decided to pursue seeing if any of my four sisters has the same genetic type as me so down the road if I need to seek a stem cell donor we would know who to call on. I was told there were four types; therefore, there is a 1 in 4 chance (25%) that each sister would be a match. So I told the doctor I have a 100% chance to find a match! To bad the math doesn't work that way.

Actually...the math did work that way! Of the 4 genetic types, each one o my 4 sisters has a unique type! What that means is none of them match each other. So the Bad News is they'll never have a match. The Good News is I am the one with cancer.

More news to come soon! I expect Cycle #5 results in the next couple of days.

Tuesday, January 26, 2010

Cycle #6 Underway...

We started Cycle #6, albeit there was a little delay today when Dr. J wasn't sure if I was going to take a break between cycle 5 and 6 to do my stem collection. The final verdict from Dr. Perez who heads up my transplant team is that he would prefer that the MM be reduced to the lowest possible level prior to transplant; assuming my blood counts are still in good standing and I am doing well.

Cycles 3, 4 and 5 were very uneventful in terms of side effects and I am actually reporting that I feel better today than possibly prior to beginning treatment, if that's even possible. We will find out the results of Cycle 5 on Thursday and I'll be sure to report out via this blog. Dr. J and went ahead and put Cycle #7 in the books, but whether we more forward with it will largely depend on Cycle #5 results. Part of me is ready to move to transplant so I can get on with my life, but I realize patience is key in tackling MM.

Tuesday, January 19, 2010

Blessed Amidst a Curse

I'll try to tone down the deep reflection, but I am blown away by how such a horrific diagnosis is paving way for new opportunities in the thick of the storm. Tonight I will be sharing my journey of Faith, Football and Cancer with the Michigan Football team. All of this while I am on chemo heading into a stem cell transplant...craziness...

Those who follow college football know that my Wolverines have been on a very challenging journey as well. There is so much we can all learn in our darkest moments whether a loss to Appalachian State or a cancer diagnosis. Sometimes the forest needs to burn a little longer so a new forest can be raised from the ashes.

I don't know how 2010 is going to unfold for my personal health, nor the health of my beloved football program, but I think we all need to keep the faith and continue to trust.

Friday, January 15, 2010

Another Miracle? WBC at 7.8!

I just sat down for my final chemo cycle #5 infusion at UMHS Cancer Center and the nurse handed me my labs. The labs are taken before every infusion because it is important to ensure that my blood counts (White, Red, Platelets, etc.) are not going to low. The chemo dominates the bad stuff, but it also take a tole on the good stuff unfortunately. Because we are preparing for a stem cell collection in February, we need to ensure that my counts don't go too low which could affect the ability to pull enough stem cells.

Being a numbers guy I also pour over every digit to understand changes and trends and then I come up with my own crazy theories that are not scientific and drive Cassie insane! For the past three months I have seen my white blood count (WBC), red blood count and platelets all hover right below the normal range. Low, but nothing to call home about. Today though, all my numbers are in the normal range, including Hemoglobin, and the WBC is 7.8! (normal range 4.0 to 10.0). I don't even have the sniffles, so it's unlikely the number is up become of an infection/illness. I also got my labs from Tuesday and the WBC was 6.3 and all other counts within normal limits.

I will admit that I don't know how significant this is, and I know there are MM patients and experts that read this blog occasionally, feel free to give your reaction based on your experience. Cassie's response was that maybe the chemo is not working as effectively; which is a really good thought. We'll know in two weeks when we get our results from Cycle #5.

On the transplant front, I agreed to move forward with a Chemo Cycle #6 in hopes to get to VGPR (90% reduction of M-protein/spike). I find it unlikely that I will drop from 0.8 to 0.3.... but maybe I should stop trusting in my own understanding and play dumb. Seems to have good results!

Thursday, January 14, 2010

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!
  • 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

Friday, January 8, 2010

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 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.

Friday, January 1, 2010

We just can't stay away from the hospital.

I hope the holidays were great for all of you. We had a pretty good Christmas week. It was busy... we had three separate celebrations and by the end of it all the kids were beginning to act like entitled little punks so we've been working on gratitude this week. It seems to be helping.

We also had a visit at the Bone Marrow Transplant office right smack in the middle of the week, which only intensified the chaos of the holidays. We spent a few hours talking with the transplant doctor about the process, the options and what we can expect. Phil will be doing another cycle or two of chemo and could have his stem cells pulled as early as next week, depending on what his numbers look like. We both liked the doctor; he was very thorough and it was nice to have a clearer picture of how things are supposed to go down.

Speaking of things going down, I was at the top of our steps on Wednesday and slipped, falling allllll the way to the hardwoods at the bottom. My lower back was in excruciating pain and there was obvious concern about how the baby was doing so Phil took me to the ER while my friend Lindsay watched the kids. It turns out that, if you want to be seen right away in the ER, tell them you're 23 weeks pregnant and fell down a flight of stairs. They rushed me back, brought in the ultrasound gurus and checked us both out. Besides a fractured tailbone, everything looked good and we were discharged about two hours after arriving. So I've been trying to rest and take it easy for the last couple of days which isn't too difficult to do since I can't move. Phil took the week off and has been manning the children as best as one person can. My mom calls us Sick and Sicker, and that's just about right. It's currently up for debate who's who.

We had intentions of watching the ball drop on TV last night from the comfort of our respective couches but got all caught up in Stupid Human Tricks on The Late Show and accidentally rang in the new year watching some guy try to blow bubbles with his mouth using baby shampoo. When we turned back to Times Square it was 12:03. We are easily distracted, and even more easily amused.

So that's the holiday update. 2010 is going to have rough patches, so I can't say I'm all excited about it at this point, but there will be some bright spots as well and those will hopefully be enough to carry us through the challenges.

I hope you are all feeling well and staying hydrated today. You crazy party animals you.