[RondaV]

My story: from Victoria, Australia, diagnosed at age 70

by RondaV on Wed Jan 20, 2016 3:51 am

I am new to this forum, but not to multiple myeloma. I was diagnosed November 2011 at the age of 70, but my story actually begins over 3 years earlier when I began complaining to my GP about fatigue, breath­lessness, and tingling, burning, and shooting pains in my feet. I had always been fit and active apart from some osteoarthritis. Eventually referred to a neurologist, but nothing significant found.

Symptoms increased, with a lot of testing done for various things. An unexplained bout of pneumonia in October 2010 put me in hospital for nearly a week, no explanation. By mid 2011 quality of life had deteriorated greatly with increasing fatigue and breathlessness, and neuropathy now affecting feet, legs to the knees, back of both thighs, across pelvic floor area, and left side of neck face and head. I also had significant bowel changes. Routine blood tests threw up a high calcium reading and 6 weeks and all relevant tests later I had a diagnosis of multiple myeloma. In some strange way it was almost a relief to at last have something concrete to deal with.

I live in country in Victoria, Australia, so was referred to our regional oncology centre nearly 200 km away. Bone marrow biopsy 50%, paraprotein 12 g/L (1.2 g/dL), other bloods reasonably OK. Stage? Smoldering, probably tipping over into active. Regional oncology is an annex of Peter McCallum Cancer Centre in Melbourne, so oncologist wanted me to see a haematologist, So referred me on to Dr. Simon Harrison at Peter Mac. I have been seeing him ever since. It is a 700 km round trip each time I go, but I think it is worth it.

Four years later, I have complete remission and my quality of life is excellent. In April 2012 I started plasmapheresis, which made an amazing difference to the neuropathy, By November 2012 I had the beginnings of bone lesions, so started Zometa, Then by February 2013, paraprotein was getting up to 20 g/L (2.0 g/dL) between monthly treatments, so started Cytoxan, Velcade, and dexamethasone (CyBorD). Had 8 cycles, Paraprotein down to 1 g/l (0.1 g/dL); collected stem cells 1 more cycle because I was not ready for transplant, then had auto transplant November 2013. I was 72, had normal side effects plus an antibiotic-resistant pneumonia, 30 days in hospital, and 3-4 months to good recovery. At 100 days, paraprotein was still detectable at less than 1 g/l, so started consolidation of Cytoxan, thalidomide, and dex, but didn't tolerate it too well, so dropped it after 2 months and continued with Cytoxan and dex for three more.

Over a year after the auto and months after I finished treatment, the paraprotein disappeared totally and I have complete remission.

I thank all those whose posts helped me through those difficult early days, particularly those who, sadly, have no reason to post regularly any more. I have truly appreciated all of you.

[Little Monkey]

Re: My story: from Victoria, Australia, diagnosed at age 70

by Little Monkey on Wed Jan 20, 2016 1:52 pm

Congrats on the remission. So you live in rural Victoria. How is sunny Mt. Thomas these days?

[RondaV]

Re: My story: from Victoria, Australia, diagnosed at age 70

by RondaV on Sun Jan 24, 2016 10:27 am

Hi Little Monkey,

Thanks for the welcome. Mt Thomas disappeared from our TV screens a few years back, but yes, we did watch it for a time.

The journey has probably not been quite as simple as it sounds when I condense about seven years into a few paragraphs, but I certainly don't regret any of the decisions made regarding treatment, etc

Ronda