I have just re-joined the Forum after first posting once about two years ago.
I was diagnosed with lgG kappa multiple myeloma ISS stage 3 at the age of 62 in June 2008. At diagnosis I had a paraprotein level of 74g/L. After deciding whether I was fit enough to endure the treatment, I was started on Cyclophosphamide-Dexamethasone-Thalidamide (CDT) treatment for five cycles with a very good partial response. At the beginning of 2009 I was given HDT-ASCT (high dose therapy and an autograft) at University College London Hospital.
Although I have had a few problems with a skin condition immediately following the transplant, within six months I was feeling my old self again and continued to get stronger since then. Very soon I was again playing tennis once or twice a week, started playing golf and leading a full and active live. A big thank you again to the whole myeloma team.
When I was diagnosed I realized that each patient’s condition, treatment and response was individual and different, and I decided that I had no desire to search the Internet for information or join in any discussion groups to share in other people’s experiences. I had total trust in my myeloma team at UCLH and Worthing Hospital, but I also had the advantage of having my loving wife, who was a nurse, to support me throughout the journey. I also tried to approach myeloma as just another disease and follow the treatment prescribed to get through each day and each week. Since then I have realized that it might be helpful to a few people to share my experience with myeloma. I certainly enjoyed hearing of new drugs and practices and meeting other patients at a recent Information Day in London.
I originally presented to a locum at my GP Practice with backache, weight loss and over-tiredness following weeks of heavy exercise yacht racing, and instead of simply prescribing rest and pain-killers, he asked for extensive blood tests, a decision that saved my life. My overseas travel plans were immediately cancelled and I started CDT treatment within one week of diagnosis. My high paraprotein levels were apparently then among the highest that my UCLH Registrar had seen.
My skeletal survey showed extensive lytic lesions and a large humeral lesion that was initially considered would require pinning. I knew then that I was starting the long haul.
Since then I had nearly four years almost symptom-free, before the paraprotein levels started climbing back again. In April 2013 I participated in the new MUK-5 study and completed eight cycles of CVT (Velcade) in October. I am now back again playing tennis, dog-walking, enjoying extensive travelling and I have even recently joined a cycling club.
Looking back over the last five years, the things that have sustained me most have been my wife; my former fitness and positive attitude; my Buddhist approach to life; and my dog.
I have enjoyed reading some of the contributions to this Forum over the last few of days and look forward to making more of my own when I feel I have something worthwhile to contribute. Meanwhile I am open to any questions you might have.
Loving kindness or ‘metta’ to all of you.
David
davidj 10 years, 2 months ago.
