Myeloma Mondays #15: Kirk from Russells Point, OH

This Myeloma journey is brought to you by Tiffany, Kirk's wife. I have had the good fortune of following along with them in their journey since diagnosis and I must say they are a very strong couple was are battling this disease at a very young age with a very young child at home.

Where were you born and raised?

• Kirk was born in Columbus, Ohio, but has lived most of his life in Russells Point, Ohio (Indian Lake, Ohio).

Where do you currently live?

• Russells Point, Ohio

When were you diagnosed and how old were you?

• Kirk was diagnosed with MM on December 1, 2009. He was 42 years old. He is type IGA Kappa.

Did you know what MM was prior to diagnosis?

• Fortunately, no.

Is there anyone else your in family with MM?

• Kirk’s family has dealt with cancer, but not MM.

What led to your diagnosis? (example: broken vertebra)

• During the summer of 2009, Kirk was experiencing terrible lower back pain and spasms that would leave him bed ridden for days. Then his ribs began to feel as though they were popping in and out, his mouth was covered in canker sores, and he lost approx 30 pounds.

How many times were you referred before actually being diagnosed?

• We had one visit with a family physician who advised us to see a chiropractor. After three months of adjustments and extreme pain, our chiropractor recommended a bone scan that led to an MRI that led to basic x rays. Because of Kirk’s age, a medical professional did not recognize the symptoms of MM. Finally, Kirk became very lethargic and dehydrated. I rushed him to an emergency room, and a simple blood test revealed a calcium level of 14. Testing and eight days spent in the hospital confirmed the MM.

Where have you received treatment?

• The James Cancer Hospital (OSU) in Columbus, Ohio

Explain your treatment history:

• 12/2009: Started Velcade/Dex/Revlimid
• 3/2010: Completed 5 cycles of Velcade/Dex/Revlimid
• 4/2010: Autologous Transplant #1

Why did you or your doctor choose a specific treatment?

• Based on Kirk’s age and health, our doctor decided an autologous transplant would be the best means for long term survival. It has not been decided yet, but we are hoping our doctor will agree on tandem transplants. Our goal is not for the five or even ten year remission – we need Kirk around for the next thirty plus years!

What has been the side effects of the different treatments?

• Extreme fatigue and slight neuropathy in the hands and feet. We feel pretty blessed by the lack of side effects up to this point. Kirk’s back pain has been an ongoing problem related to the cancer, not the treatments.

What has been the hardest thing about your MM journey?

• My husband is asleep next to me on Day +7 of the stem cell transplant, but I believe the most difficult thing is saying goodbye to our old life where things felt safe and constant. I now realize it was a naïve frame of mind, but I miss it.

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

• Embrace the treatment because it feels empowering when you are finally taking the right steps toward fixing the problem. The worst time for us was the uncertainty of what was going on inside Kirk’s body. Once he was diagnosed and his treatment began, we felt as though we were finally moving to a more positive place – and we felt ready for the fight.

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

• I am not going to lie – this is a realization that is very difficult to accept. And we still have our good days and our scary days, but our little boy is a wonderful source of joy for us! He is a daily reminder to Kirk that he must fight the good fight. We have a very strong support system of family and friends, and we also feel very positive by the recent advancements in research toward a cure for MM.

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

• About a month ago, Kirk and I were returning home from work, and Kirk realized that he forgot our house keys at the restaurant we own. He felt annoyed (after a long night of work) that we had to go back. It was a beautiful night, my mom was with the baby at home, and I just felt grateful to be in the car alone with my husband for just a few moments longer. I feel SO MUCH MORE appreciative of the time we have together, and I really enjoy the moments in life that feel normal and regular – like forgetting your keys somewhere.

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

• Kirk has been around asbestos and pesticides, but not for extended periods of time.

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

• Nick’s Myeloma
• MM for dummies
• Multiple 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 to cancerkicker at gmail dot com. I would love to share your story! -Phil

Chemo...No more

Tonight was my last night of chemo since I started 147 days ago (10/6/09). The anticipated four cycles turned to seven and I am happy to move on. The results have been strong to quite strong, and I am ready to nail down this bone marrow transplant.

For old time sake I decided to go with a video blog....even with this cold that is stealing my voice:

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!

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!

Praise:

• 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
  

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...

You guys are too much.

Holy Myelomey... we spent the majority of our morning and early afternoon stuffing, addressing and mailing envelopes full of Cancer Kicker bracelets to you all. Some were sent clear across the country, and some were sent to addresses just a few streets away from ours. The entire time I was on the verge of tears because, seriously everyone... thank you. I can't believe how many of you donated so generously and sent amazingly encouraging messages, some of you already dear friends but most of you never having met us. We are touched and humbled and so, so grateful to all of you, our friends, old and new.

I took about 35 envelopes to the post office today. I was told they would go out on Monday so if you payed via Paypal you should be getting your stash sometime next week. Wear 'em proud. The more people there are who learn about multiple myeloma (MM), the more likely spell check is to eventually STOP telling me it doesn't exist. We don't want to just kick it, we want to cure it.

Off to get the kids in bed and get ready for a little football action. Go Blue!

Picture of Phil dominating his nightly chemo pills in preparation for the Wolverines domination of the Hawkeyes: