Monday, July 19, 2010

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

4 comments:

feresaknit said...

Richard - I read somewhere that firemen have a slightly higher incidence of MM even excluding the first responders at 9/11.

Phil - Thanks for confusing me completely! I managed not to comment at the lack of a Myeloma Monday last week as you may have had other things to do such as convalesce (I have trouble spelling it never mind doing it) but the date at the top of this post really threw me especially in my currently easily confused state. Fortunately I was able to confirm that it is still SUNDAY and having checked for boxes I am still waiting for a furniture delivery today - Sunday - and that although I am a little forgetful at the moment I haven't managed to mislay an entire day! ;P

tim's wife said...

Richard,
Did you have insurance somehow in the UK? I'm wondering how you were able to have an allo transplant and
get it paid for if you did not. Getting coverage for allos is tricky in the US even with insurance sometimes.

Sid said...

Thanks Richard, always good to another mm real life story.
Your comment: 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.
I agree and include potential side effects from those drugs that may not surface until later on. Very important now we are getting longer survival times.
Sid.

Preferred Customer/ Janice said...

Richard: Glad to know you are doing so well and pray you keep going. Yes Phil another Young victim who no longer a "victim". Keep up the good work Richard.