Myeloma Mondays #22: Richard from Dana Point, CA

Richard is pictured on the left next to his sister who provided her stem cells for transplant.

Where were you born and raised?

• In the United Kingdom, county of Surrey about 25 miles south of London

Where do you currently live?

• Dana Point, California , USA

When were you diagnosed and how old were you?

• September 2004 at age 44 / IG-D " LAMBDA " Bence Jones Light chains

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?

• Back pain / bone pain then complete loss off feeling from the stomach down a tumor in my spine was impinging on the spinal cord causing severe nerve problems. Basically I fell over and could not walk as my legs could not feel anything.

How many times were you referred before actually being diagnosed?

• Only once partly because I thought it was an old back injury but as soon as I had an MRI and saw an Oncologist he diagnosed MM straight away.

Where have you received treatment?

• In the USA at first....I had 21 days of radiation treatment in the tumor which was at my T7 vertebrae, along with Dexamethasone to help reduce it's size.
• Having been in the USA for only a short time I had no insurance so in October of 2004 I flew back to the UK to start six months of Chemo / VAD at a local hospital near to my parents.
• After the chemo I was referred up to University College Hospital in central London where I had a full ALLOGENEIC transplant with my sister's bone marrow.

Explain your treatment history:

• Sept 2004 ~ radiation and Dexamethasone plus drugs for Peripheral Neuropathy.
• Oct 2004 ~ VAD (vincristine, adriamycin, dexamethasone) chemo / Zometa.
• May 2004 ~ TBI ( total body irradiation) for 4 days with Melphalan then Allo transplant.
• May/June ~ Seven weeks ( 4 in isolation ) for counts to come back up.
• July to Feb 2005 ~ At parents house on Cyclosporine fighting GVHD ( graft verse host disease )
• March / April 2005 ~ Back to USA on just Penicillin, Aciclovir and Sodium Clodronate for bones.
• Fly back to UK twice a year for blood / free light chain tests...so far so good.

Why did you or your doctor choose a specific treatment?

• At first I was scheduled for an AUTOLOGOUS transplant but as I was fit and young ( now 45 ) the Doc's thought I should get my siblings tested and my sister turned out to be a 6 by 6 match for my marrow......they explained that there was a high mortality rate ( 36 % ) due to rejection issues ( GVHD ) but there was in my particular circumstances a good chance I would survive long term without taking any Myeloma drugs.

What has been the side effects of the different treatments?

• All the normal stuff...hair loss, very fatigued, some stomach problems but not much vomiting.
• Major Peripheral Neuropathy for many months from the nerve damage and drugs.
• The big problem was the complete loss of any Salivary glands resulting in a severe dry mouth making it very difficult to eat, this did come back very slowly but was most difficult to deal with relating to what food to eat ( soon learnt to make good soup !!! ).
• The (sibling donor) transplant resulted in some mild GVHD / rejection issues which killed off all my tear ducts producing a sticky mucus, the result being I have to constantly use two types of eye drops one to dissolve the sticky ness and one to lubricate.
• Lastly continuing back pain and weakness.

What has been the hardest thing about your MM journey?

• Coming to terms with a limited life span.
• Not being able to do the sports I wanted.
• Dealing with dry mouth for such a long period.
• Learning to live with eye problems.
• Thinking of the time when love ones will be left alone.

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

• Do as much research as you can and get lots of opinions from different doctors.
• Think about risk assessment with regard to your treatments.
• Consider your " CUMULATIVE TOXISITY " by which I mean what drugs you use over what period of time.......leaving options for future treatments if you can.
• Be positive about all the future treatments that are on there way.
• Join a local support group and go to an IMF conference or two.

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

• Yes, Yes, Yes, .......I do think that I have been lucky and am in a very unusual position of having an ALLOGENEIC transplant .......I am encouraged by all the new treatments that have come about in the last 5 years.

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

• Live life with GUSTO and try not to let the small things get you down....NO STRESS !!!
• I realized after being diagnosed that there was no turning back so just get on with it and adjust ones perspective to a shorter time scale but don't forget to have fun. Walk instead of run and be thankful.

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

• My dad was in bomb disposal in the second word war and my mom was a nurse for fifty years and I was in the Fire service in the UK when I was in my early twenty's so could have been exposed to all sorts of nasty stuff.

What MM sites or blog's had you found good information from after diagnosis?

• Mainly the IMF and the The Myeloma Beacon plus some Blog's

Momentarily emerging to say hello.

This is the first time since Phil came home that I've been able to sit down at the computer and type more than a few word Facebook update.

It appears to me that the recovery from this transplant has been tougher than the first. Phil seems more tired and generally run-down. He also has had a headache since he got home but I'm convinced he's having Mountain Dew withdrawals. No matter... he seems to have taken a turn for the better today, hence me actually having time and energy to post an update.

The two weeks in the hospital went well. Phil spent much more time resting, less time stationary biking. More time joking around with nurses, less time trying to beat the walking record on the transplant floor. Oh, and more time waiting out tornado warnings in the hallway, less time.... well, NOT waiting out tornado warnings in the hallway.

At some point we came to the realization that, while we've attempted to protect the older two kids from the harshness of this whole situation, little miss Ruby has been here through this entire ordeal. First on the inside, privy to all the meetings with our medical team, months of chemo and through the first transplant. Then on the outside, coming to the hospital every day during transplant number two. I think Ruby's presence throughout the last year just adds to our love and appreciation for this delightful new member of our family.


My not-so-subtle hungry baby.

On tap for the next few months... forced rest for Phil. He likes to be social and creative and busy, so resting goes against the fiber of who he is. I get the difficult job of making sure he's napping, eating and wearing his mask when he ventures outside. Plus the added bonus of household responsibilities (the house looks like hell) and full-time kid duty (I look like hell). Speaking of kid duty, Iris decided to start potty training last week when she got off her motorcycle big wheel bike and asked, "Where can I go pee?" which was completely the worst timing in the history of potty training. Caregiving is not for sissies (and thank God once again for my mom helping out and keeping this ship, and me, afloat every day).

I'll be popping in from time to time to update you all on Phil's recovery since he's on internet hiatus until further notice. Maybe I'll even do a video blog or two if children and time permit/s. We'll see.

We're thinking of all of you and hope you are taking the time to enjoy each one of your days.

Thanks Frank

Yesterday was my hardest day yet. I was extremely tired and had a bad headache. Not the ideal state of mind for a national syndicated interview. So when I got a call from Frank Beckmann's administrative assistant, I did what any other person who wants Multiple Myeloma to be a household cancer name would do, I picked up the phone.

So I actually did more than pick up the phone. I allowed Frank to interview me about my journey with Multiple Myeloma; literally the first full day home after my 2nd Bone Marrow Transplant (who does that?!?!?!?!). Frank and everyone at WJR involved did such a wonderful job. You can listen to the interview online right here: http://www.wjr.net/Article.asp?id=1867064&spid=34613

As mentioned on the interview. I will be moving away from blogging as I focus on gaining my physical strength back. The Cancer Kicker Foundation (CKF) will still be pushing forward so more updates about how I am doing will be provided (most likely by Zak) there at http://cancerkicker.org. You can help get the Cancer Kicker Foundation off the ground by buying some dominate stuff at http://dominategear.com

Addendum by Cassie:
Check back periodically, folks. I plan to pick up the posting slack while Phil is on the mend.

Phil's Vacation: Day +12

Today I was released! Back home I returned to a couple of kids that were tickled pink to see me. Iris was so happy she just kept giggling. She sat in my lap for an hour as we watched Thomas together and I just couldn't stop rubbing her feet and kissing the top of her head. Man, that felt so sweet. Later, Ocean got up from his nap to find me resting on the couch and he just broke out in laughter and excitement. All in all, I felt like this was a triumphant return filled with joy. These kiddos make me realize why I need to put everything I have into moving beyond Multiple Myeloma. To not see these kids grow and mature and one day become their own, would be a great misfortune. Although, I will continue to trust in the unseen and unexplainable, I will fearlessly believe in a cure.

It didn't take long for me to crash after hanging out with the kids for a little bit. I have learned from my previous transplant that my hemoglobin is one of the best indicators in terms of how I will be feeling. Once it drops under 8.0, I am a wreck. It's hurts to think and do anything other than sleep. That was this afternoon. Because I left the hospital two days earlier this go around, I am not getting all the red blood cell transfusions, which would boost my hemoglobin and allow my heart to chill a little. I believe the red blood cells are the last blood cell to bounce back, so I expect this week will consist of me being reunited with our comfortable king size bed.

What's up Next?

• Wednesday: Blood work / labs with possible transfusions and possible PICC line removal
• Day +30: Blood work to determine state of disease and how I am recovering. Stop wearing mask outside... yippee!
• Day +60: Blood work to determine state of disease and how I am recovering. Possibly begin my maintenance therapy (i.e. more low-dose chemo)

Please note that I will be slowing down on the number of blog posts. I accomplished my goal of capturing my BMT experience for those who will be going through that in the future. I am now in need of some serious recovery, which will probably lead to me taking a vacation from social media and focusing on rest and rehab for the next 6 months. All and every expect of the Cancer Kicker Foundation is owned and managed by Zak and Steve. Keep them busy by getting some dominate gear. (DominateGear.com)

Thanks everyone for tuning in and providing support and encouragement over the last two weeks. It definitely helped us through BMT #2!!! And on the 13th day he (Phil) looked back at all that he had been through and done....and RESTED!

Phil's Vacation: Day +11

Today marks independence for Americans and I stake claim of independence from cancer this day forward! My white blood cells (WBC) started to come back and so did my ANC. If I would not have tossed my cookies this morning, my BMT doc was looking to let me go home. No worries, that gave me the opportunity to play the world's great prank (view it here) on 8A at UMHS and also celebrate the 4th with some awesome transplant patients and their families as we dominated Rock Band for 3 hours and we have video right here to prove it!!!



I am out of this joint tomorrow, making my stay 12+ days, two better than my first transplant. Now it's time to start on the road to a long recovery. I am ready.

Keep dominating,

Phil

Phil's Vacation: Day +10

I still have not engrafted, which means my Absolute Neutrophil count has not been at 0.5 or higher for two consecutive days. The nurse I had a bet going on on which day I would engraft and it looks like we are both going to lose. My hope is that today my ANC appears in my blood work. I actually started feeling bone pain (lower back) from the Neupogen shots which I felt to during stem cell collection, but not during my first transplant. I take this as a good sign and every time I feel the pain, I am going to envision fireworks going off in my bones because the Myeloma is dead, the old has gone and the new has some!

So rejoice and be glad in this day with me as we remember how awesome it is to live in a country with so much freedom. I may be the first generation of Brabbs' to not fight in a war going all the way back to my Great Grapa George. So this country, with it's flaws, has come a long long way. Let the bell of Freedom ring.

Phil's Vacation: Day +9

Day +9 consisted of good company, still no appetite and a possible sign of engraftment of my stem cells....hooray!

A quick reminder that Zak will be packaging shirts on Wednesday, so it would be helpful if you put your order in today at http://dominategear.com. We have the classic gray shirt with the burgundy (Multiple Myeloma) ribbion and our HOT dominate Breast Cancer shirt as well. Thanks for the support in dominating cancer.

Phil's Vacation: Day +8 (Special Interview with Nick Willis)

This is a very special post to me because my friend Nick Willis, Silver Medalist in the 2008 Beijing Olympics in the 1500m, gets personal and vulnerable to explain how he has been able to dominate his mother's death by cancer when he was only 5 years old.

Nick is going for gold in London in 2012, but greater than that, Nick is officially a dominator of life. This guy lives with a semi-truck full of passion and a soft heart....but he is still a little punky around the edges with his sarcasm. I love this man. You can read more about Nick on his personal website by clicking here.

Below is Nick in Beijing receiving his bronze medal which eventually was upgraded to Silver when the winner was caught using performance enhancing drugs. Second fastest runner in the mile in the world.....now that's DOMINATION!