A life saved by second opinions, experimental treatments, and a touch of luck

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By James Bond

“How long will I live?” I asked my oncologist in Ohio in 1992, when I was 44 and diagnosed with multiple myeloma.

“Three years,” he answered.

Instead, I enjoyed 10 more years of active living. Then my disease began to overtake me; my kidneys were failing, I was unable to eat solid foods, and I had fevers of 105 degrees.

Having already had three stem cell transplants, I seemed to be out of options. My wife Kathleen and I were advised to seek hospice care.

Although I took solace in having lived long enough to see our sons graduate from college and find good jobs, I was not ready to give up hope. I was familiar with experimental treatments because each of my stem cell transplants had involved a clinical trial.

I remember being nervous signing my first consent form, but I trusted my doctor who assured me my health, not the trial’s success, would remain his top priority. I felt good that my participation could help other cancer patients.

So when Kathleen and I heard about clinical trials for the drug bortezomib, now available as Velcade, we asked my local doctor if I could participate. He replied, “Sorry, Jim, there are no openings.”

We conducted our own search and found Dr. Paul Richardson at Dana-Farber. We traveled to Boston and within two weeks, the experimental drug had saved my life. I returned to Ohio and resumed working full-time, with my local oncologist and Dr. Richardson coordinating my care.

James and Kathleen Bond

Jim Bond and his wife, Kathleen

My cancer returned in 2004 and I entered another clinical trial at Dana-Farber — this time, for the drug Revlimid — and achieved another remission. I continued taking Revlimid for seven years.

During this period, life was good. Our sons got married and grandchildren arrived. I retired at my firm’s required age, exercised daily, and became a full-time volunteer in Ohio, educating others with cancer. I began participating in the American Cancer Society’s Pan Ohio Hope Ride in 2007 and rode every year through 2011, cycling 328 miles from Cleveland to Cincinnati in four days.

Kathleen and I have shared our survival story with cancer support groups across the country, focusing on the value of second opinions, clinical trials, exercising, and staying positive.

Last fall, my blood counts began to decline significantly and my local oncologist performed a bone marrow biopsy (my 26th). He said I was at risk for a secondary cancer — leukemia — and I may need another transplant.

Once more, Kathleen and I turned to Dana-Farber for a second opinion. The doctors agreed that my bone marrow was abnormal, but it was not yet time for a transplant. Instead, they advised that my blood be monitored to see if my counts would come up on their own. I slowly began to improve, and by April 2012 my blood counts had fully recovered.

My cancer remains in remission 20 years after my diagnosis. We accept that there is no cure for multiple myeloma — yet — but I continue to live well with this disease, grateful for the clinical trials that saved my life and offered new therapies to many others.

James (Jim) Bond and his wife Kathleen live in Shaker Heights, Ohio.

8 comments

  1. Karen says:

    Thank you for sharing your story of hope. Diagnosed at 34 years old with cancer, my hope is to see my 9 month old daughter grow up, get married, and enjoy seeing her children! Stories like yours make me know I chose the best place for my cancer care. I love DFCI!

    • Jim Bond says:

      Karen, You are welcome. I had similar goals for being with my family when I was diagnosed. Treating cancer as a long-term, manageable disease is possible. My hopes and prayers are with you. Contact us anytime if you’d like. Research, Dana and exercising daily have helped to keep me alive. Best regards, Jim

      • elrod says:

        I hope you are not spreading false hopes here. Yes, there are the lucky few but by far that is not the rule. We have a far far way to go before we can do what most hope for. I know first hand in six cases that the routine of chimo and radiology are not good providers of quality of life. And for most of the cancers it is very sad route to take – but everyone hears the stories like yours and tries to repeat and what did they gain? A week, a month or two, or two or three years of living hell. What would have happened if nothing was done except for good pain management? The doctors do not want to talk to much about the these two differences.
        But I am happy when I hear your stories as it means we may be getting yet another small step forward. I just want to get both sides out there for consideration.

        • Jim Bond says:

          Thanks for your perspective. Yes, I am very lucky to be alive and active 20 years after diagnosis. In 1992 when I was told I had a few year to live, it would have helped me to read our story and to consider sharing experiences–which we do when asked. Please contact me if you like. Jim.bond48@gmail.com

  2. Elizabeth Plaia says:

    Jim,
    My husband was diagnosed August 13, 2010 with a T-2 plasmacytoma and non- secretory multiple myeloma. He could hardly walk. We were living in Florida when it happened. They opted to do 23 radiation treatments. After that he began having weakness in the legs again and said it was the Decadron. He was in a rehab hospital, then nursing facility and on Decemer 8 2010 I suggested Shands Hospital in Gainesville because no one wanted to take my husband’s case. Neurosurgeon was suspended where I lived and doctors in Gainesville told us his condition was irreversible — he was a paraplegic. Apparently bony fragments fell into his spinal canal and paralyzed him. On St. Patrick’s Day, March 17, 2011 he began to move his toes a little. We went back to Stamford Medical Center in CA (2nd time, 1st time would not operate on a paraplegic), husband operated on May 24, 2011 and stayed there for almost two months in rehab. Our daughter had a baby on May 22nd, and she was so happy we stayed that long.
    On Aug. 17th my husband walked on the parallel bars for the first time, it was a miracle.
    However, we thought after the operation he would have no pain. Doctor repaired fracture, put in titanium rods, decompressed his entire spine, but Leo lives in constant pain probably because of the compression all those months he was paralyzed.
    He was on Revlimid, velcade, Dex, but couldn’t take side effects because of PN. His numbers are great, he has been on Zometa for a year with no let up on the pain. He has continuous leg spasms, PN, constant pain. He takes several pain meds, baclofen, Valium, dilaudid, fentanyl patch, but it’s the constipation that is driving him crazy. He thinks he’s going to die this year and I tell him that’s nonsense. He never had a SCT. He is 70 years old. PET Scan shows no activity of myeloma, everything fine. He just wants to be able to go to the bathroom on his own. He takes Relistor injections to help move his bowels and Senna Prompt. Do you know anyone with the same problems?

    • Jim Bond says:

      Sorry foy my late reply, and sorry you dad is facing challenges. No, iI have not heard of a similar case. If I were him, I would contact the Moffitt Cancer center in Tampa, which has a large MM practice. Or, Dana Farber in Boston, Paul Richardson.

    • Bruce Twyman says:

      Bruce

      Did your husband ever solve his bowel problem? I just read your post and was interested because I had constipation issues after a stem cell transplant in 2011 and it drove me nuts until I started on Miraax every day and it provided some relief.

  3. Jim Bond says:

    I woul try the Moffitt cancer center in Tampa

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