Back in the (Treatment) Game

Ocean started baseball this summer. We spend many nights watching Tiger's Baseball. He is starting to pick up on the game and enjoys calling the Yankees "the scribbles" because their logo looks like scribbles to him. It's a joy to see him make many new friends and learn a new game and he is turning out to be quite the goof ball.

This week I am getting back in the maintenance game, after roughly 8 months off. I started back on 10mg of Revlimid for 21 days followed by one week off. Every three months I will be doing a cycle of Velcade for good measure. What's dominating cancer without some chemo cocktails...right???  I do miss all the folks on B1 at UMCCC...but now I get to see them every three months!

The gameplan is to follow this maintenance regiment for two years. It may seem kind of a crazy decision for someone who is in Complete Response (i.e. no cancer detection), but with Myeloma, we want to kick, crush and elbow drop from the high ropes this disease while we have it down. We don't just want to kick the disease down, we want to kick it down AND OUT... forever. We trust and believe this will increase our odds in this endeavor.

#domiante

-Phil

Myeloma Mondays #45: Tim from Geneva, IL (age 42)

Share your story on MM for Dummies!

If you would like your story of that of a loved one posted on MM for Dummies, copy and paste the questions below in an email and send your response to me at phil at cancerkicker dot org. Thanks for your willingness to share your story for others to grow in their knowledge of Multiple Myeloma!

My name is Tim, I was diagnosed with Multiple Myeloma in Feb of 2011.  My wife and I live in Geneva. IL with our two daughters.

Where were you born and raised?

•     Chatham, IL

Where do you currently live?

•      Geneva, IL

When were you diagnosed and how old were you? 

•       Feb 16, 2011 - 42 years old - Lambda Light Chain Myeloma

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? (example: broken vertebra)

•     Anemia, first diagnosed as B12 deficiency.  Had B12 injections for 6 months with no response, referred to hematologist / oncologist who diagnosed me with Multiple Myeloma - High Risk d(13q), t(11:14).  No bone lesions.  80-90% Plasma cells in bone marrow biopsy.

How many times were you referred before actually being diagnosed?

•      One

Where have you received treatment?

•      La Grange Oncology - Geneva, IL
•      Rush University Medical Center - Chicago, IL

Explain your treatment history:

• 3/2011: started RVD
• 6/2011: Completed 4 cycles of RVD with complete remission 
• 7/2011: Autologous Transplant #1 (In Process)

Why did you or your doctor choose a specific treatment?

•     Doctor stated with high risk Myeloma needed aggressive treatment.  Doctor stated based on my age and good health SCT is the best option for long term survival.  Induction along with SCT are currently the standard of treatment for Myeloma based on NCCN guidelines.

What has been the side effects of the different treatments?

•     Dex has been the worst with hard time sleeping, then the crash.  I would average 4 hours of sleep on Mondays, the day I would take 40 mg of Dex.  On Wednesday and Thursday I would be tired and depressed.  Dex also gave me acid reflux and I would become hoarse a day after taking the Dex.   The doctor suggested taking Zantac on the day I take the Dex and for two days afterwards.  This helped with the acid reflux and hoarseness.

What has been the hardest thing about your MM journey?

•     Telling my 10 and 15 year old daughters I was sick along with preparing for the worst, going over the will and life insurance policies.

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

•     Don't read old information from the internet, there is great hope with new drugs.  Stick to reputable sites for research like MMRF and IMF.  Also keep track of your own test results, nobody cares more about your health than you.  Drink lots of water to keep your kidneys functioning.

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

•      The first month was the toughest, felt like it was over.  After that I became much more positive.  I read the book The Anatomy of an illness perceived by the patient by Norman Cousins, this book helped me stay positive.  Positive energy itself has it's own healing powers.  My doctor at Rush helps me stay positive, he believes the novel therapies could be the cure.

•    Have a good support team, you will need someone to bring you up when you are feeling down.  Talking about the disease to your support  team helps you cope.

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

•     Priorities in life and fear.  As the Tim McGraw song states Live Like You Are Dying.  Have no fear and do all those things you feared to do, even if you are cured do those things and never look back.

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

•      Parents no, I used to do a lot of wood working and home projects, which included painting and staining.  I often wonder if epoxying my garage floor could have had anything to do with my Myeloma.  The epoxy chemicals were very strong, and looking at a series of blood test results, something occurred about the same time I epoxied my garage floor.

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

•      IMF
•      MMRF
•      Myeloma Beacon
•      Multiplemyelomablog.com
•      Nvdmyeloma.blogspot.com

Tribute To Paula

Tribute to Paula,

This past weekend the Myeloma community lost a bright soul.  She used knitting to spread love to my family and many others. Still to this day my kids only know of Multiple Myeloma in the context of the “Myeloma Buddies” that they cherish and sleep with every night. When Ruby was born we got a special special package from the UK. Paula had knitted a beautiful baby blanket for Ruby, the one she clutches to every night to comfort her when we leave the room for her to go to bed.

Paula’s generosity and sense of humor was something someone newly diagnosed with MM thrived on. She is going to be dearly missed, but never forgotten by our family. Our kids will one day know her, as they have known the gifts she has given them.

Paula – you will always be loved and thought of by the Brabbs family. Thanks for sharing yourself with us. We wil continue to doMMinate on your behalf.

Myeloma Mondays #44: Carole from Marysville, WA (Age 64)

**To add your story Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to phil at cancerkicker dot org. I would love to share your story! -Phil



Where were you born and raised? 

• I was born in Everett, WA and raised in nearby Marysville, WA

Where do you currently live? 

• Marysville, WA

When were you diagnosed and how old were you?    

• I was diagnosed January of 2010 at age 64.

Did you know what MM was prior to diagnosis?  

• Yes

Is there anyone else your in family with MM? 

•  My mother's oldest sister died of MM in 1959. Her son who is now in his 80s was recently diagnosed with MM and I have another cousin on my father's side of the family who is also in his 80s and he was diagnosed with MM about a year ago.   I grew up thinking MM was the worst disease you could ever have.  My mother didn't know that I had MM for the first year and a half.  I just couldn't tell her I had the same thing that her sister had.  

What led to your diagnosis?  

• I had none of the usual symptoms.  I actually thought I  had pneumonia because I was having trouble breathing.  When I finally went to the doctor, she ordered an X-ray and they found a pleural effusion.  That sent me straight to the hospital where they drained 2 liters of fluid.  This led to a CT Scan and the discovery of a tumor across my lungs in the pleura.  The doctors initially thought it was mesothelioma even though I had no known exposure to asbestos.  After a biopsy, they confirmed that it was mesothelioma.  However, in recovery, I began bleeding profusely which led to emergency surgery that included a nearly foot long incision.  While I was still in the hospital, they determined that the tumor was a plasmacytoma and I had multiple myeloma.

How many times were you referred before actually being diagnosed? 

•  0

Where have you received treatment? 

• Providence Regional Cancer Partnership in Everett and Seattle Cancer Care Alliance

Explain your treatment history:

• 1/2010: Radiation - 14 treatments
• 5/ 2010 - 8/2010: Thalidomide, Velcade and Dexamethason - 6 cycles
• 12/2010: Autologous Stem Cell Transplant 
• 4/2011 - 10/2011:  Velcade maintenance - Cycle: 4 weeks on 1 week off

Why did you or your doctor choose a specific treatment?  

• I have high risk MM and really didn't have a choice.

What has been the side effects of the different treatments?  

• Neuropathy, mucusitis after transplant, hair loss.   I haven't had nausea and vomiting so I think I am lucky.  

What has been the hardest thing about your MM journey?  

• Mucusitis was by far the hardest part of my MM journey.  I was hospitalized for 17 days because I couldn't eat or swallow pills and I was in so much pain.  Also, the uncertainty I have knowing that MM is incurable and will come back.  It is like living with a sleeping giant.

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

• I discovered strength I never knew I had and that has been a gift.  Early on I was unable to research and read about MM.  My local oncologist who is marvelous sent me to "the big boys", as he called the Fred Hutchinson doctors at Seattle Cancer Care Alliance.  I felt comfortable putting my faith in their expertise.  Fred Hutch. received the Nobel Prize for pioneering bone marrow transplants and they are also the largest transplant clinic in the world, so  I knew I was in good hands.  After transplant and recovery, I have since done a lot of research and reading online. Lesson: If you have first rate doctors, it is OK to rely on their expertise until you are ready to face what you might find when researching MM yourself.

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

• I stay positive most of the time and I am not sure how I do it.  It just seems to happen.  However, I do have my down times.  In fact, I am just coming out of  the "doldrums" and wrote about it on my most recent blogpost today.

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

• I don't worry nearly as much about little things.  I just think in the scheme of my life now they just aren't very important.  I am trying to "inhabit my days" more.

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

• No

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

• I read several blogs of other MM patients.  I like the  Patient Power, Fred Hutchinson Cancer Research Center and International Myeloma Foundation websites.  I also have a blog at  http://caroleleighi.blogspot.com

*Read other Myeloma Mondays by going clicking here.

**To add your story to MM Mondays Story Time copy and paste this questionnaire (click here) and send it in an email to phil at cancerkicker dot org. I would love to share your story! -Phil

3 Good Reasons we have been MIA

Yes, we have been missing from the Myeloma blog-o-sphere. There are three good reasons why we have been hanging low more lateley (see pic below).  The good news is that it is not because of lack of good health. My M-spike finally bottomed out in April.  The last six months have been a whirl wind and we now feel strong enough to continue the push to put an end to Multiple Myeloma, not only personally, but for all of those we have grown to know and love in the MM community.

To get things jazzed up again, I made the mistake of asking a buddy if he would be foolish enough to run a half marathon with me. I have been struggling to maintain motivation to exercise, although I realize it's one of the best things for my body and probably one of the biggest contributing factors to me dominating Myeloma longterm.  He accepted the challenge and the rest is history.

So today I signed up for the Chicago half marathon and we are inviting others to run with us (there's also a 5k!) We already have six commited souls and the more the merrier. A couple of folks that will be running took on the responsibility of being the fund raising champions to grow the DomiNation to spur on more awareness and research dollars aimed at ending Myeloma. All in all, this is going to be a blast. #doMMinate with us!!!

Want to join us in Chicago...then go here!

Myeloma Monday #43: Emily From Austin, Texas (Age 39)

Where were you born and raised?

• Washington, DC. Moved to California at 15 years old and Texas at age 27.

Where do you currently live?

• The heart of Texas: Austin

When were you diagnosed and how old were you?

• Feb 2010, 39 years old

Did you know what MM was prior to diagnosis?

• Nope

Is there anyone else your in family with MM?

• No. Father had CML (leukemia) and passed away at age 52.

What led to your diagnosis?

• Stress?! I landed in the hospital with pneumonia and plummeting vital signs. The nurse told (very slowly) that an "On-Call-ogist" was coming to see me. A doctor On-Call? No, I want the full time doc, thanks! 
• Two weeks later, I did follow up with same oncologist who realized that the electrophoresis ordered in hospital wasn't done. "So, let's just do that test before you leave today". I seemed to be determined to be diagnosed, despite no other symptoms and having elevated protein blood work for 6 years before that.

How many times were you referred before actually being diagnosed?

• None (see above) 
• But, I did have 3 spontaneous eardrum ruptures and a couple of unexplained nausea episodes that preceded my MM diagnosis.

Where have you received treatment?

• Austin, TX: local oncologist; Northwestern University: Dr. Singhal; Methodist Hospital in San Antonio: Dr. LeMaistre

Explain your treatment history:

• 2/2010: Diagnosed with MM, Confirmed at Northwestern 3/2010
• 5/2011: No treatment needed for first 15 months (M protein hung out at 2.0 level), then 35% plasma cells on BMB and opted to treat with RVD for 3 months (7/11-10/11)
• 11/2011: Autologous Transplant in San Antonio, TX
• 3/2012: Maintenance Revlimid

Why did you or your doctor choose a specific treatment?

• Transplant was chosen to "kick" the disease down and since the research has shown that patients with transplants are living longer than those without.

What has been the side effects of the different treatments?

• Fatigue, weight gain (steroids), chemo-induced menopause (fun at 41!) and 4 months post-transplant still having ongoing digestive problems

What has been the hardest thing about your MM journey?

• Good question. I think I've fared pretty well with physical symptoms but it's the mental change that is most challenging. I can't seem to return to the person I was. My ambition and purpose are altered and I'm waiting for a new passion to replace them. The hardest part is thinking about the impact on my husband and children. 

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

• Don't believe the hype! Google is not necessarily your friend. It's okay to take a lot of time to get used to the idea and recover. This is generally a slow moving disease, so don't panic. Also, MM may shorten your life but it is not a life sentence. Statistics may get you down but all you need is a success of "one" for your life to continue. Boogie Barb (a 20 year survivor) said that MM wasn't the worse thing that she's had to deal with in her life...hard to believe when you're first diagnosed.

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

• Two awesome mentors (through Imerman Angels in Chicago and Cancer Connection in Austin, TX: they match you with someone the same age and diagnosis). Lots of prayer, meditation, yoga, painting (things I didn't take the time to do before). Also, when people first found out about my cancer, they sent so many emails, cards, books, etc. I made a I CAN (cer) DO IT book of all these positive thoughts and advice. Now, I flip through it when I am losing my motivation and to see how far I've come.

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

• Since I am a tall female (5'10"), I've always said, "Life is short...and I am not." Who knew how true that would be? I realized in the first year that I wasn't afraid of dying but I wasn't exactly living as fully as I could. I was holding back in my relationships so that people could survive without me. Now, I'm taking more risks and learning more skills to see myself as a more creative and peaceful person. My definition of success has changed. Even though I am a successful doctor with financial security, it means little compared to my health and happiness.

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

• Maybe? Father and I were Georgetown dental school "guinea pigs" in the 1970s.

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

• This one! CancerKicker.org; IMF; Myeloma beacon listserv (ToSubscribe to this list- To:  Listserv@listserv.acor.org).