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James' unfolding MM story, as told mostly by his wife Carlin
Where were you born and raised?
- James was born in Mumbai, India, but was raised in Sydney, Australia
Where do you currently live?
- We lived in San Francisco when James was diagnosed (Carlin is from USA) but due to not being insured, we got a medical evacuation flight back to Australia for James' treatment, and we are currently in Sydney Australia
When were you diagnosed and how old were you?
- April 9, 2010 at the age of 39, type IGG
Did you know what MM was prior to diagnosis?
- We knew about bone marrow cancers, but not really multiple myeloma
Is there anyone else your in family with MM?
- James' paternal uncle potentially has it, but is waiting on more tests
What led to your diagnosis?
- James' ribs had been hurting since August 2009, and he had sought treatment from chiropractors, acupuncturists, and doctors. They all said it was torn intercostal ligaments and that it would take several months to heal. By March, the pain had left his ribs and moved to his back. Extreme back pain and being unable to get out of bed for over a week due to weakness and spasms led to Carlin's grandmother to call a family friend who was a doctor (we had not gone to doctor due to being told nothing was wrong by many other doctors, and we didn't have any health insurance either). The family friend told us to get an ambulance and bring him to the emergency room, as it might be cancer (we thought he was crazy to think it was cancer) but we called an ambulance, and within an hour of arriving at the emergency room, a CT scan and blood tests revealed multiple myeloma (yes a HUGE shock, we thought maybe he had herniated disks in his back or something).
How many times were you referred before actually being diagnosed?
- We had gotten blood tests in June 2009 which looking back on now he OBVIOUSLY had multiple myeloma (white cells low, platelets low, high protein, high immunoglobulin- DUH!) we questioned the doctors on these tests and they said it was probably just an infection or something. We also got sperm tests done at this time, and his count was really high, but his DNA integrity was really low. We also questioned these and were told, DNA gets damaged as you approach 40. We then brought James to the emergency room in February 2010 as his ribs and sternum really hurt. They took basic x-rays and said nothing was wrong. We practically begged for an MRI and blood tests, they told us it was unnecessary. It wasn't until we arrived at the emergency room April 9, 2010 that he was finally diagnosed.
Where have you received treatment?
- Initially at California Pacific Medical Center in San Francisco (Dr. Bertrand Tuan-hematologist), and currently at Westmead Hospital in Sydney Australia(Prof. Ian Kerridge-hematologist)
Explain your treatment history:
- 4/9/2010- Diagnosed, trying to get stable for evacuation to Australia, given pamodromate, morphine, valium, antibiotics
- 4/23/2010- Medical evacuation flight to Australia, began TCID treatment (thalidomide, cyclophosphamide, idarubicin, dexamethazone), also on prophylactic clexane (blood-thinner), antibiotics, anti-virals, anti-fungals, calcium, vitamin D, and zometa
- 2010- planning an autologous stem cell treatment soon (after 4 rounds TCID and some rest) and then followed later by a donor bone marrow transplant (his brothers have been tested but we have not received results yet)
Why did you or your doctor choose a specific treatment?
- Our doctor chose a very aggressive treatment approach and two separate transplants because James is very young, and otherwise very fit and healthy, and thinks this is his best chance of long-term survival/remission. Also his myeloma was very advanced by the time it was diagnosed, 90% of the cells in his bone marrow were abnormal.
What has been the side effects of the different treatments?
- The pain medications he was on (morphone and oxycodone) really upset his stomach, as does the dexamethazone. He gets diarrhea when he is on dexamethazone. He gets a bit of nausea from the thalidomide, but not too bad. He has lost 15 kilograms, but this is a combination of the disease and the chemotherapy. We are using complementary therapies to counter the side effects. Aloe juice and probiotics seems to really help his stomach. Milk thistle has helped his nausea and is supposed to protect your liver from side effects of chemotherapy and tons of prescription medications (Carlin is a naturopathic doctor, so had done tons of research on natural therapies to complement his main treatment regime).
What has been the hardest thing about your MM journey?
- The shock of finding out so quickly via a trip to the emergency room was pretty huge. Facing cancer at such a young age. Feeling confused as we have such a healthy lifestyle (only eat organic foods, practice yoga 2 hours a day, don't drink alcohol, don't smoke, etc). Also, we had just moved to the USA, and had so many dreams and plans for our life there, and then had to move right back to Australia for treatment after less than 12 months living in the USA.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
- You are your best advocate. Keep pestering doctors and don't take no for an answer. You know your body best, and they will easily brush you off- so be persistent! If you feel something is not quite right, do not stop until someone has a good explanation for this.
- Also, take your health into your own hands. Try to be as positive as possible, and use as many holistic approaches as possible to complement your chemotherapy and transplants. James is meditating a few hours a day, eating organics, getting fresh air and exercise, listening to uplifting music, using aromatherapy, etc. Also, google can be your best friend and your worst enemy. Take it with a grain of salt. It doesn't have to be all doom and gloom.
- Be honest with your friends and family about what you need. Don't be afraid to ask for favors and accept favors too. Everyone needs a community around them!
How have you been able to stay positive and encouraged in your MM journey?
- See above about meditation, but honestly James is pretty much the most positive person you will ever meet, so it comes naturally for him. For Carlin, it's a bit harder. Trying to find the gratitude in the little things, as the big things may not be so rosy, but there is always a little thing that you can find to be happy about. We set up a caring bridge website for James (), James loves hearing all the messages he gets on the website, and that has really helped him keep going too.
After being diagnosed... What perspective was changed the most?
- Well, we were always pretty positive holistic-minded people who took advantage of what life has to offer, traveling and trying to maximize the moment. But, now we try to just take one day at a time. We don't live too much in the future and make too many plans, we just try to get through each day and be happy in the small things.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
- James worked in a pharmaceutical company's lab from 1990-2000, so we suspect this may have played a role, though we don't know of anyone else who worked in this lab with cancer.
What MM sites or blogs had you found good information from after diagnosis?
- It has been a real whirl-wind as it's only been slightly over a month we've been on this myeloma roller coaster, but we use the multiple myeloma research foundation site, and like reading the blogs of other myeloma patients too.