4 months later...

Today marks 4 months since I started chemotherapy in preparation for a stem cell transplant or two where I will be using my own cells. Just to recap, here's a list of what my body has endured over this time:

• 6 Doxil Infusions
• 23 Velcade Infusions
• 76 25mg doses of Revlimid
• 30 20mg doses of Dexamethasone
• 16 10mg does of Dexammethasone

I don't have any earth shattering wisdom quite yet, but jotted below are some quick thoughts on what I have found helpful over the last four months:

• Lean on the MM blog-o-sphere: Connect with folks who are blogging about their MM experience. These people have been an amazing network of support for us and I hope one day to meet them all in person.
• Add to the Conversation: Start blogging your journey or that of your loved one who has MM. This has helped me connect with myself, family and friends all awhile leaving a trail of information for others to be enlightened, inspired and hopefully converted to Michigan Football fans. And if you need help setting up a blog, just send me a comment.
• Side Effects: Know what they are, but understand that they will not last forever. A couple of my side effects took me to the ER/Urgent Care 3 times in my first two cycles! Four cycles later there has been no signs of these issues.
• Worse may be better: The worse I have felt, the better response my cancer was having to the drugs. Try to find the good in the worst of circumstances.....or just laugh.
• Partner with your Doctor: We are all in this together, especially the patient and the medical staff. I think having a team environment in this journey is critical. I wish this disease had a start and finish date, but we're not there yet. Therefore, we all need to push forward together.

Four months from now I hope to have dominated my first stem cell transplant with no signs of M-protein. I also hope to have been able to sit back and relax for the first time in my entire life. We'll see....

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!

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?!?

It's about more than just Kicking Cancer...

...like women giving me free shoulder and neck massages at the UMHS Infusion Center and the fact that the warts on my right foot, which have been family for seven years, are almost gone!

Just think, you too could get babes all over you, remove all your blemishes and lose 20 lbs in 12 days with R.V.D.D. (i.e. my chemo drugs)!

Coming to a CVS Pharmacy near you...

Dex wakes me up at 5am

Please note that I went to bed around 9pm, so I still got 8 hours of sleep...