Care Giving

“Genes are like the story and DNA is the language that the story is written in.”

Sam Kean, The Violinist’s Thumb

Summer Clouds

Recently, I traveled to Portland, OR for my monthly multiple myeloma support group meeting. In the course of the last 3+ years I have solidified friendships with several other members. We know much of each other’s cancer story. Before and after the meeting, we make time to catch up on the myriad developments in our treatment.

This meeting featured none other than my own oncologist, Dr. M. He delivered a presentation based on the latest research from the American Society of Clinical Oncology. In keeping with recent trends, ASCO revealed further evidence of drugs that may soon be available to fight myeloma.

The percentage of patients responding to trial protocols impresses those of us with MM. Survival times creep forward as researchers find diverse ways to suppress the malignant plasma cells. Still, it’s easy to become sedated by the minutiae of clinical trials. After discarding the chaff of numbers, two clear messages about the status of our disease remained: the search for curative solutions continues to progress, but ultimately, nearly all MMers relapse.

Pathway outside our back door.

Dr. M explained this situation by noting that myeloma is a genetically complicated disease. He drew a comparison with chronic myologenous leukemia. CML patients, due to the discovery of Gleevec, enjoy a high rate of cure for this once deadly cancer. The biology of CML is simpler than that of MM. In CML, a specific enzyme in white blood cells is locked in an activated form. This causes the excessive proliferation and high white blood cell count characteristic of the cancer. Gleevec, binds to the site of the enzyme and prevents its activity, causing tumor cell death.

The genetic intricacy of MM does not lend itself to such easy remedies. While Gleevec can focus in on the single weakness in CML, multiple myeloma has a more sturdy biology. It is smart. It finds its way around blocked pathways in order to continue cloning itself. Currently, targeted therapies don’t exist because the target cannot be found.

White Oriental Poppy in my garden

Novel agents, such as revlimid and velcade, suppress the tumor burden but these drugs are broad-spectrum cell killers. Their specificity leaves something to be desired. Relapse occurs because cancer cells that are genetically resistant to a drug outgrow all the nonresistant cells.

One of our support group members, K, introduced Dr. M. Her husband was a patient of Dr. M for six years. Last year his MM took an aggressive turn. All attempts to stifle the cancer failed and he passed away early in the winter of 2011. Her husband was a Buddhist. Many members of our group, as well as Dr. M, attended the traditional and moving ceremony held at his temple in Portland.

In spite of her loss, K remains committed to our group. She utilizes her background in graphic design to prepare meeting announcements. She also writes a caregiver’s blog for the International Myeloma Foundation. And, she was instrumental in getting Dr. M to speak with us. K’s testimonial to Dr. M spoke to the high regard in which colleagues and patients hold him.

A bouquet of wildflowers in the garden

Obviously, doctors cannot fight our battles for us. Dr. M is a clinician, not a researcher. He will not discover the cure. However, the quality of his caring matters. Compassion has healing attributes. It may not mend the body, but it can protect our soul as we brawl with the biology of MM.

Eventually, a pharmaceutical like Gleevec may unravel the mysteries of multiple myeloma’s DNA. Truly, the best is yet to come. In the meantime, individuals such as Dr. M and K illustrate that care giving is also a powerful drug. Injecting a heavy dose of dignity into the heart and mind of another person has no adverse side effects. You don’t need insurance or a prescription. Furthermore, a clinical trial is not necessary to evaluate how it improves the quality of life. It just works.

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7 responses to “Care Giving

  1. “Compassion has healing attributes.” I couldn’t agree more and not just in disease.

    Best of luck, John. Keep taking care of yourself and your garden and let the science catch up.

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  2. Laughter is also a powerful drug, methinks…and, just in case, I take large and frequent doses of it! 😉
    Great post, John, as always…I was particularly interested in the CML/MM discussion–thanks for that!
    Please give a big pet for me to Spanky..:-).

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  3. Very interesting – my brother has CML (dx’d 2004 – doing exceptionally well on Gleevec) & my husband has MM (dx’d January 2012 – still on CyBorDe heading towards Allo stem cell transplant). Thank you for clarifying some of the differences between the 2 cancers.
    Where and when are your support meetings held? We are in Hillsboro and haven’t heard that there was a group near us. Best of luck to you!

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  4. I can’t help thinking that the more complex cellular systems are just as likely to have an Achilles heel to hit and bring it down, and am intending the researchers are finding that spot in MM cells however clever they might be. Your explanation was very clear and concise and helpful for me to send people who still ask me about the differences between MM and other ‘blood cancers.’ Intending wellness for you!

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  5. Hi,
    I am writing from CureTalk, a medical research and health care blog. CureTalk is the blog site of TrialX, an online platform that enables patients to find trials near them.
    CureTalk is excited to launch a whole new series of monthly Cure Panels in which we plan to invite experts/patients/bloggers to discuss latest treatments being developed for a specific condition. We are kickstarting the venture with a Myeloma Cure Panel on 22 August 2012.
    Dr. Ravi Vij is our myeloma expert. Details of the panel can be found here, http://trialx.com/curetalk/2012/07/myeloma-cure-panel/.

    If you are interested in participating, please mail me, priya@trialx.com.

    thanks, Priya

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  6. Dear John,

    I have now spent a day reading your blog from start to finish, and I just have to say “wow”. Being as young as I am – with about a million thoughts constantly spinning around in my mind – I find peace in the thoughtfulness and tranquility of your words. You seem to harbour so much knowledge, and having the ability to balance realism and optimism in such a situation is admirable.

    I’m glad I happened to stumble upon this blog: I will follow you on your journey in life and hopefully I’ll pick up some of your wisdom along the way. 🙂

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