[John Burton]

My introduction: John Burton

by John Burton on Wed Jan 26, 2011 12:00 pm

Thankyou for the wealth of information on your site.I am a patient being treated for Multiple Myeloma.Adding to complications, I underwent two mitral valve replacements a few weeks after multiple myeloma diagnosis.Age 63 yrs.(Healthy male engaged in heavy physical work)Chromasomal abnormality found which Drs are unable to explain.Symptom was a sore shoulder 2 years prior to diagnosis.I have received one month of Thalidomide and eleven treatments of Velcade with Dexamethasone.I had about 8 blood transfusions and Intragam, approximately monthly, to assist with white cell count.On diagnosis I had at least seven spinal fractures, and three bouts of radiotherapy relieved the pain in my lower back significantly.My vertebrae have all suffered collapse rates from 10 to 90 percent causing a loss in height of about 10cm.I spent approximately 24 weeks in hospital where I was treated with large quantities of antibiotics for a lung infection and plenty of morphene for pain.Eventualy after three attempts to get me home I have managed to stay out of hospital for over a year,despite a further two lung infections.A recent attempt to harvest stem cells led to the collection of about half requirements from two sessions on the apheresis machine.Due to the heart operations and the fact I am on warfarin,the risk factor for a stem cell transplant increases in my situation from around 2 percent to 5 percent.This makes the efficacy of a stem cell transplant questionable.I am hopeful of being admitted to a trials programme involving Panabinostat,Dexamethasone and Velcade.Considerable exclusion parameters have to be negotiated to enter the programme and hopefully it will not have closed when I meet the requirements.At present my pain is sufficiently managed with Morphene Sulphate,Endone and Paracetamol.I would be lost without my hospital type bed and motorized recliner chair.I have progressed from walking with a frame and not being able to lift my feet into bed, or even move my body backwards or forward in bed.I do not experience pelvic or shoulder pain at present.I am very fortunate.I can pick up my own clothes,care for myself,walk around and on occasions drive my car a few kilometres.I have a beautiful wife of almost 41years who looks after me.My gorgeous grandson tells me he will help the doctors get his Poppy better.
Keep fighting and never give up.I survived two heart surgeries with streptococcus through my body, and here I am now going into the twentieth month that should not have been. Take care,fight hard and treasure your family and friends.
John Burton
Sydney Australia

[Jack L.]

Re: My introduction: John Burton

by Jack L. on Thu Jan 27, 2011 2:01 pm

Dear John, how long ago were you diagnosed?

Velcade plus panobinostat definitely sounds promising. I hope you're able to make it into the trial. Keep us updated.

Glad to hear your grandson is looking out for his Poppy. Maybe he'll grow up to be a doctor some day.

Greetings from half way around the world, Jack