Kia Ora from New Zealand!
I am delighted to have this opportunity to share the story of our journey with Multiple Myeloma. My partner, Patrick, was suddenly diagnosed with 80-90% blood plasma saturation of cancer cells in his body - plus a chromosome deletion 1p32 to top it off. He is now MRD- with stringent complete response.
When Patrick was first diagnosed we were in such shock for a time. He had not shown any signs of being sick other than tiredness creeping in over the last few years. Getting our heads around all the medical names and terms was overwhelming. We spent many nights googling and searching to understand what was going on. It was so hard to believe it was real but we had to face the facts and fast. Patrick was told he would have 6-10 months to live without treatment.
I kiss the ground of our specialist, who put Patrick forward for, what is called in NZ, the Kiwi Trial program. It was the latest and greatest in treatments at that time and he was fortunate enough to qualify. It consisted of 5 months of Induction therapy which included chemotherapy administered twice a week for 3 weeks, then one week off. Then a stem cell transplant.
Following this a further 4 months of consolidation therapy. With Patrick’s chromosome deletion 1p32 he did a lot of research. Life expectancy with this deletion was looking at approximately 2 years with treatment. Pretty dire right! Past research on treatments showed varying results. One said a stem cell transplant was detrimental with this deletion, another said double stem cell transplant was essential. You can imagine the dilemma he was finding himself in. Patrick reached out to a lot of specialists in NZ for their advice, and even to one of the top specialists in the USA. It all came back to the same advice, to proceed with his treatment and have the stem cell transplant. He did and this took him to MRD-, and then further treatments resulted in Stringent Complete Response.
I’m not saying it was easy. In fact so far from that. As many of you on this journey already know. Actually it was tough. Can I say, not just for Patrick, but for me too as his support person. I took to writing often to help me along. In my early morning wakeups I’d grab my iPad and I recorded everything from diagnoses, medical information and treatments, what Patrick was going through, and how I was being affected as his support person. I recorded all the ups and downs and ins and outs! The iPad truly became my best friend and saviour and I eventually wrote a book called We've Got Cancer: An insight into one couple's challenging journey of cancer diagnosis and treatment.
Meanwhile Patrick focused solely on getting through his treatments with the goal focused on MRD-. He wanted to stop once or twice through the program, he was finding it so hard. And at one stage I thought I might lose him when he got really ill with pneumonia.
However, with the guidance of our great specialists he continued through it all, and we are so thankful he did.
The really good news is that, 3 years and 4 months on from treatment, Patrick is still MRD- in Stringent Complete Response. He has 6 weekly blood tests and we feel so blessed every time they are perfect. We have scrubbed out those past life expectancy predictions and put in their place ‘new treatments, new possibilities’. Latest research has shown how effective new treatments actually are, and medical science is still discovering better treatments since our time. We have great consequence possibly this may bring for Multiple Myeloma patients!
Patrick is doing amazing, living an almost full life now. I know he has been lucky, and I know journey with Multiple Myeloma, but we felt our story is something worthwhile to share with you the trauma, all the fear and worry, to be able to show there’s hope with this diagnosis.
“When you’re at the end of your rope, tie a knot and hold on.”
~ Theodore Roosevelt ~
Kia Kaha [Stay Strong],
Kushla and Patrick
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of HealthTree Foundation (formerly Myeloma Crowd).