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