Myeloma Mondays #50: Deb from Hertfordshire, UK

Where were you born and raised?

• I was born in Sheffield but lived in Hertfordshire UK most of my life

Where do you currently live?

• Hertfordshire, United Kingdom

When were you diagnosed and how old were you? 

• 07/01/2009

Did you know what MM was prior to diagnosis?

• Yes

Is there anyone else your in family with MM?

• No

What led to your diagnosis?

• Routine blood test

How many times were you referred before actually being diagnosed?

• once

Where have you received treatment?

• University College London Hospital  - MacMillan Cancer Centre

Explain your treatment history:

• 2009: MGUS diagnosed Paraproteins 4g/l by Haematologist at Local Hospital Lister Hospital, Stevenage UK
• 2010: Paraproteins 8g/l Skeletal survey clear no symptoms
• Oct 2011: Paraproteins 16g/l Bone Biopsy showed 8% cancerous cells
• July 2012 paraprotein at 28 g/L referral made too University College London Hospital UCLH
• Aug 2012  paraprotein at 35 g/L Smouldering Myeloma diagnosed
• Jan 2013  paraprotein at 50 g/L Multiple Myeloma Diagnosed
• Jan 3rd 2013 Bone Biopsy 80-90% cancerous cells found. Signed up to the PADIMAC trial.
• Jan 21st 2013 started chemo cycle 1 (21days)
• Feb11th 2013 Cycle 2
• March 4th 2013 Cycle 3
• March 11th Velcade injection put on hold due to Neuropathic pain in legs, arms and fingers.

Why did you or your doctor choose a specific treatment?

• As I had no symptoms I was eligible for the PADIMAC trial

What has been the side effects of the different treatments?

• Neuropathic pain in legs, arms and fingers.

What has been the hardest thing about your MM journey?

• Accepting a different way of life

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

• It's not as bad as you might first think. 
• People around you want to help.
• There is a lot of support and advice out there.
• Writing a blog has really helped me.
• It's important to live in the moment.
• Your life will change but some things will be for the better.

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

• Writing my blog www.mymyelomajourney.wordpress.uk

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

• How unimportant work is and how very important family and friends are. I found skills that I didn't know I had and I was stronger than I thought.

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?

• http://ejbones.wordpress.com
• http://www.myeloma.org.uk
• http://dialmformyeloma.blogspot.co.uk
• http://margaret.healthblogs.org
• http://jetblackliving.wordpress.com

Myeloma Mondays #49: Gilbert from Denville, NJ

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!

Where were you born and raised? 

• NYC, grew up in Glen Cove, NY

Where do you currently live? 

• Denville, NJ

When were you diagnosed?

• January 2010 (Age 61)

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? 

• Extreme pain in hamstrings

How many times were you referred before actually diagnosed?

• Once

Where have you received treatment? 

• St.Claires in Denville, Hackensack Medical Center

Explain Treatments:

•  2 weeks radiation reduce tumors on vertebrae 5 months of Revlimid and Dex, 2 stem cell transplants

Why did you or your doctor choose a specific treatment?

• Strong health 61 years old very physically active

What has been the side effects of the different treatments?

• Peripheral neuropathy in legs 

What has been the hardest thing about your MM journey?

• second transplant very rough also the stress on my wife of 42 years without her guidance I would not have made it to this point

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

• Trust in doctors and be willing to listen to advise from caregiver

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

• Very much so keep moving and push for physical activity adjust to different lifestyle of not working

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

• no fear of dying

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

• Yes

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

• MM Beacon 

2013 Update

While sitting in the Cancer Center at U of M, for what may have been my 100th appointment over the last 5 years, I could not help but feel a sense of gratitude. I felt thankful for the parking lot attendee, who always smiles at me like she was expecting me, to the medical staff that has had to put up with me all these years. I feel like we have all grown together and have continued to carry the same message of hope, that keeps us all keeping on each day.

As for my appointment, my bloods counts came back legit. Hemoglobin is the highest it has been in years. I attribute that to playing indoor soccer in the over 30 league every Monday night. That's right, I am back to playing not-so-competitive sports. My leg strength is not quite like it used to be, but I can still miss wide left like it is nobody's business. I am having fun with it and so are my teammates. In a recent game, a teammate of mine dropped the cancer card after I was tripped by an opponent. He said, "Dude, do you know he's a cancer patient?!?!?" 

Lastly, I took a leap of faith and decided to join a very close friend in helping him grow the business office for Torrent Consulting up in Michigan (website) (Like on Facebook) The company is growing quickly and the services seem to be in high demand. The job provides the flexibility to work from home, so that means more time with the family. I also plan to get more plugged in with the University and the Ann Arbor community, which rocks.

In short, 2013 has been good to us so far. -Phil

Myeloma Mondays #48: Brad-strong from Westfield, NJ

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!

Where were you born and raised?

• Chicago, IL

Where do you currently live?

• Westfield, NJ

When were you diagnosed and how old were you?

• 12/1/12 age 45

Did you know what MM was prior to diagnosis?

• Not a clue

Is there anyone else your in family with MM?

• No

What led to your diagnosis?

• Extreme back/hip pain

How many times were you referred before actually being diagnosed?

• Had my annual physical late September 2012. Blood work normal other than slightly low RBC. Doctor said not to worry. When I told him about back/hip pain he said it was a strained oblique and off I went to physical therapy. 

• 2 months later I couldn't even sit in the car. Back to the doc next day. More blood work showed elevated protein levels and X-rays discovered bone lesions. Right iliac bone was disintegrated. That was thanksgiving week. Week after had bone marrow biopsy that confirmed MM diagnosis. 

Where have you received treatment?

• Started treatment at Mt. Sinai immediately

Explain your treatment history:

• 1 cycle complete VCD (Velcade, Cytoxin, Dex)
• 2 cycles complete CRD (Carfilzomib, Revlimid, Dex)
• Start 3rd CRD Friday 2/15/13

Why did you or your doctor choose a specific treatment?

• I subscribe to the "Mel Stottlemyre theory" of MM. I will be the best patient I can be and my doctor will be the best doctor he can be. If we both play our roles, we will beat this thing. I work with Dr. Jaggannath at Mt. Sinai. I am confident that I am in the best possible hands. So far - over 50% response/remission. M Spike down to 1.02 from 2.76.  So...it's working. 

What has been the side effects of the different treatments?

• Very fortunate that there have been very few rough days. I did have the flu once which kicked my rear. Zometa (once a month IV) is rough as well. Two days after I get the chills and the shakes pretty fierce. Other than that - business as usual. 

What has been the hardest thing about your MM journey?

• It's always there. There isn't a day that goes by that I don't have cancer. I feel great. The further I get, the more active I am. I am at the gym. Elliptical - light weights. But no matter what, no matter how great I feel, no matter how much love and support I get (and I get a ton of it) I still have cancer and that will never change since there is no cure for MM. 

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

1. Trust your doctor. If you don't - get one you trust. Find the absolute best and follow his/her directions. 
2. Find friends. I have found friends from blogs, twitter etc that I can email and give and get support from. Nobody knows what you are going thru as well as someone else going thru it. 
3. You are different. Averages mean nothing. Believe you are an outlier. Everyone with MM has a different experience and it presents itself differently in everyone I meet. One experience does not necessarily translate to another. There is no cookie cutter MM
4. Don't stop living.  

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

• Belief. I believe I am an outlier. Family, friends, writing my blog.  Don't ever lose you sense of humor.  
• Also - don't stop. I haven't missed a day of work. I coach basketball and soccer for my kids. I go to the gym.  Life keeps happening. Stay busy. If you stop living before life stops you are already dead. Show cancer that you won't back down!  One more thing - love others harder than you have ever loved them before. Time is precious. Make the most of every moment. Wife, kids - spend every moment together and hug them every chance you get.
• OK one more:  Mt Sinai. The nurses, the doctors, even the people that check you in are the nicest, most compassionate people. It makes a world of difference when you surround yourself with positive, nice people. These people aren't there to do a job or go to work. They really care. 

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

• Milestones. I used to measure them in "firsts" now I measure them in "lasts" as in this wont be the last...maybe "nexts" is a better word?
• There is a reason cancer picked me. It's because I am strong, relatively young and healthy. It is my job to fight cancer for all of those that aren't strong enough to fight for themselves. I feel a responsibility to help others remain positive and to occupy cancer enough to allow others to live another day. Cancer can't fight us all at once, right?  Let me occupy some time and give others a rest. 

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?

• MMRF
• Beacon
• Matt vs Myeloma
• (My own) bradstrong.wordpress.com
• TWITTER - the best resource I have found (bradstrong-@bradcoustan)

Cancer Results are back!

Every three months I get the chance to hop on the train to Chicago, for a 5 hour trip that gets me in around midnight. I have gracious friends through the city that take me in, so I hop a cab to their place where I crash. When Tuesday morning arrives I catch up with my friends and then they give me a lift or I take the train to the University of Chicago where I see Dr. Jakowbiak.

This trip was similar, but special in its own right. This time I took a traveling companion, my second born and first daughter, Iris. I wasn't sure how traveling with a five year old would go, but inside I felt so thankful for the opportunity to share this moment with her. Her and 'ducky' were the best two traveling companions I could have asked for. We also had a blast reconnecting with a dear friend of mine. 

This trip Dr. J ordered a bone marrow biospy. Although the test only grabs marrow from one area of your body, it hones in very closely on your blood. So needless to say, there was some excitement around what the results would say. This is one area in my life where I want to be negative! 

So the results are now in...and yes...I am still negative! Dr. J even went as far as saying if I can maintain this result for another year, that he would consider taking me off of maintenance chemo. 3.5 years in, with only 1 more to go. It's the last leg to go. 

So 2013 is off to a great start! This time next year I hope to be hitting the training with Iris again, this time returning with no chemo in hand!!! 

Keep dominating everyone!! -Phil

Oh how I hate Ohio..

I was raised in a family where you don't use the h-word and we share that same value with our kids. BUT, on Saturday after my Wolverines fell to the undefeted Buckeyes, it seemed to be the only verb that could come close to describing the feeling in the pit of my stomach.
 

I know, I know…it’s only football and more so than ever it is over marketed and a gross sign that Americans have nothing better to do than cheer on 19 year old kids with a veracity that could solve world hunger 7 times over.

 

The beautiful thing about this rivalry is it reminds me how two football foes make each other better given their shared goal to win a championship. Through taking on the foe of Myeloma, some of my dearest friends who are helping make me better and stay on track to kick cancer and dominate life are those who saw nothing wrong with parading Jim Tressel around the field, as if he wasn’t the reason that their 12-0 season means very little to ESPN college football commentators.

It is the passion these Buckeyes have for their team that I find them transferring to other worthy causes that can make a monumental difference in lives of others. They will paint their face, drink their kool-aid and never lose hope in their Buckeyes. It may annoy many of us who don’t understand how invested someone can be in a sport they never played or a school they didn’t go to, but I have learned to embrace that passion of some Buckeyes, who have had a deep impact on my life.

Below is one of my most memorable photos of the year. It includes my good friend Barb, a diehard Buckeye from Columbus, who’s mother passed away with Multiple Myeloma this year. She paced me through the Chicago half marathon so I could reach my goal of finishing in 2 hours. Believe it or not, I crossed the line at 2 hours and 34 seconds. She not only has become a running coach of sorts for me, she has also raised close to $20,000 for cancer research at..guess where??...The University of Michigan Comprehensive Cancer Center of all places. She doesn't allow allegiance to her football team get in the way of advancing research towards a cure. She has been has faithful in my journey as she is with her Buckeyes in the fall. For that, I am thankful.

Before I get targeted as a heretic by the Michigan faithful, I will add that three of the people in the car are Michigan Alums who also ran the race with me and assisted me in my domination of the race. So the hatred for Ohio has in some cases turned to love, but I still think often about stiff arming Buckeyes. 

Maintenance Update

Slight nausea, slight peripheral neuropathy and fatigue.

That’s how I sum up the toll that the increased maintenance treatment has brought on. After months of staying up late (after 10pm some nights!), I am slowly slipping back to crashing beside one of the kiddos before 8:00pm hits.

 

I am very thankful that I was able to stay healthy to coach Ocean’s soccer team this season and I am hopeful that we can make it through the end of the year without any major health issues. The kids continue to grow and entertain Cassie and me. Ocean has lost his two front teeth, Iris turns 5 in a couple of weeks and Ruby got stitches without shedding a single tear. Life is beautiful.

With Thanksgiving and Christmas on the way, I can’t think of a better way to end the year.

Team + Training = Cure

This weekend I was blessed with the opportunity to motivate all the people who participated in the LLS Team In Training for the Detroit Free Press Marathon. I spoke directly to the mission of Team and Training and while giving my motivational speech, it hit home that there is a lot for us all in our own cancer journey to learn from.

The talk might as well have been titled, “Team + Training = Cure”.  As I worked on my speech, I reflected back on the last four years with cancer and The Team, The Team, The Team (as Bo Schembechler would say) is a key part of keeping the hope alive. It’s been the meals delivered to our doors, the support of our family, friends and church. It’s my medical staff, the other cancer patients and the countless others who have made an effort to say keep on keeping on!

Along with My Team (to left are a few who have been big supporters throughout my journey after first connecting on the BMT floor of UMHS), training to get my body back in shape has been crucial. It’s easy to tell myself that I should take a nap, or sleep in. No one would ever question an extra long nap on Sunday. But, I think there has been a direct correlation in 2012 between my overall health and the amount of time I spend exercising…imagine that! So training for a 5k, 10k or half marathon has been so critical to a healthy well being, physically, emotionally and spiritually.

When you combine the support of community (aka The Team) and physical training, I think this improves the result for a cure. I am still very focused on beating Myeloma for good, not just for a little period. We are on that path and through the support of The Team and the continued Training, I think we will get there.

Thanks to the Lymphoma and Leukemia Society TNT for helping me see that this weekend!

Go Team!!!

-Phil