Thursday, January 29, 2009

Pre diagnose

From about October 2000 I began experiencing back pain. My Doctor thought it was related to a back injury I suffered 12 months earlier so sent me to a physiotherapist for treatment. I agreed with his assumption, it seemed logical. The physiotherapist recommended back and stomach strengthening exercises which gave an initial improvement. Eventually the pain returned so I was sent off to an osteopath. Not much joy there, on reflection I am disappointed that the Osteopath did not detect multiple myeloma, after all they are bone and muscle experts.
The bone pain was increasing in my back, ribs and now my thighs. Getting in and out of bed was a mission, I could only sleep on my back and barely raise my head off the pillow.
Driving the car was becoming more difficult, it hurt getting in and out of the car and I could not twist my back to look where I was going when reversing.
I was on pain relief, Panadol and Paradex, which did help though it masked the problem.
At that time I was medically na├»ve, not proactive and very optimistic, “it will be better next week” I used to say. My multiple myeloma journey has taught me to remain optimistic, become more proactive and up skill on medical matters. Now, nothing is taken for granted.
My wife and I attended a Country Rock festival where I heard a joke from a performer Dennis Marsh about a jockey, plumber and a bed. It was hilarious, can’t remember it now, (chemo brain?), so hilarious I laughed so much I broke two ribs.
That triggered action from me, my GP and my medical insurer. Tests and x-rays were done and it was confirmed I had a cancer, multiple myeloma.
On June 1st 2001 my multiple myeloma journey began.

Monday, January 26, 2009

Summary June 2001 to January 2009

Here is a summary of my MM story from diagnose in June 2001 to now January 2009.
I was diagnosed with MM stage III IgG kappa in June 2001. At diagnose I had extensive bone involvement including 3 fractured ribs, one collapsed vertebrae and one partially collapsed vertebra. Two weeks after diagnose I developed a DVT in my right calf which soon cleared with the help of warfrin. A DVT is not uncommon for MM patients. Initial treatment was VAD (Vincristine, Adriamycin and Dexamethasone) and the bisphosphonate Aredia and after 4 months I had a good response to both. This was followed by a stem cell collection which gave me enough stem cells for two transplants. In November 2001 I developed a retinal vein thrombosis in my right eye which was MM related. The symptoms were blurred vision which fortunately cleared by 3 months.
In December 2001 I had an autologous stem cell transplant and again a good response which led me into the plateau stage.
At the beginning of the plateau stage I was on interferon which caused no problems initially but I soon became progressively depressed. Depression is one of the side effects of interferon and for me stopping the interferon eliminated the depression.
In March 2005 I developed another retina vein thrombosis, this time in my left eye which followed the pattern of the previous one, blurred vision which again fortunately cleared by 3 months.
All was fine until September 2006 when I suffered a pathological fracture of the left mid shaft humerus which required surgery, a full length rod and pins (titanium prosthesis) followed by radiation to kill off any MM. My IgG level increased at this stage but reduced after radiation.
It was then decided that I would benefit from maintenance therapy of a low dose of Thalidomide. All was well for eight months when I started to feel the dreaded peripheral neuropathy in my finger tips, the sole of my feet and in the toes. After another four months the neuropathy had increased so the dosage was reduced giving a small reduction in neuropathy. It soon increased again so I stopped the Thalidomide. The neuropathy has since reduced but I can still feel it in the soles and toes.
In November 2007 my IgG levels started rising accompanied by pain in my right humerus, the start of my disease relapse. A lytic lesion was developing in my right humerus, radiation decreased the pain but the IgG levels kept increasing.
A discussion on further treatment came to the conclusion that a second stem cell transplant was the best option. This was scheduled for July 2008 but delayed one month for other urgent cases. By the time I entered The BMTU I was suffering MM pain in the spine, ribs and right humerus. My right arm had to be kept in a sling to prevent a breakage.
Eight weeks after the second transplant I had surgery on my right humerus, a full length rod and pins (titanium prosthesis).
The 100 day post transplant #2 tests have come in successful. Yeeeeehaaaaa!!!!!!!!

Glossary:
BMTU: Bone marrow transplant unit
DVT: Deep vein thrombosis.
IgG: Proteins produced by plasma cells.
MM: Multiple myeloma, a cancer of plasma cells that usually arises in the bone marrow.
Plateau: When myeloma is stable. A period of stability.
Prosthesis: Artificial body part such as a limb.

Sunday, January 18, 2009

The blog journey begins

After travelling on my multiple myeloma journey since June 2001 I have decided to create a retrospective blog.
Bear with me while I get things underway and learn all about blogging.
I intend to tell my story from day one to where I am now.