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Arnie’s Rebounding World: Collateral Damage

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Published: Jun 10, 2014 1:42 pm

Shortly after starting my new compassionate use protocol with elo­tuzu­mab, which I described in my previous column, I began to have elevated levels of my liver enzymes.

It initially was unclear whether this was occurring due to a reaction to the drug, a tumor in the liver, or other possible causes.

After several tests, including an MRI, a PET scan, and blood workup, the source of the problem was found to be unrelated to my new treatment. It was instead due to a condition I had developed called hemochromatosis, commonly known as iron overload.

As its less technical name suggests, hemochromatosis is a buildup of iron in the body. When it occurs, the result can be damage to the liver as well as other organs, including the heart and pancreas.

Iron overload, it turns out, is not uncommon in people like me who have become transfusion-dependent. While the condition is treatable with drug therapy that removes the excess iron, I still was somewhat taken aback by the diagnosis.

I had come to think of the blood transfusions as second nature and rarely gave them much thought. In fact, I would almost look forward to them. Like Lance Armstrong, I appreciated the extra boost they gave me.

I mention this story because it gave me pause, leading me to think of all the unseen effects the myriads of treatments I received over the years are having on my body.

It then struck me that these unseen effects can be thought of as collateral damage.

In the military, collateral damage refers to unintended injury or death among innocent bystanders during attacks on enemy targets.

For those of us with multiple myeloma, or any other cancer for that matter, the enemy target is of course the cancer.

The innocent bystander is the rest of the body and all of its vital organs, including the brain, heart, liver, kid­neys, lungs, muscles, eyes, and skin.

The collateral damage of our treatment includes the obvious side effects we all must endure. Neuropathy, fatigue, low white blood cell counts, and increased risk of infection are all things we are familiar with.

Yet some of the unintended effects of our treatments are more subtle and insidious. Liver and kidney de­te­ri­o­ra­tion, cataracts, diabetes, and muscle wasting from steroids are conditions that can sneak up on us. They may be taking their toll in ways we don’t even realize but the effects add up.

I have been told that myeloma patients may not die of the disease but that years of treatment just wear the body down until it gives out.

Cancer treatments, including the treatment of multiple myeloma, have evolved over the years.

Traditional cancer treatment relied on high-dose chemotherapy. The idea was to blast the body with poisons that would hopefully kill the cancer cells faster and at a higher rate than normal healthy cells. However, these drugs were non-targeted, and collateral damage was therefore high. Plenty of multiple myeloma treatments, including those used in the stem cell transplant process, rely on this approach, and I have had more than my share.

Almost all of the new multiple myeloma treatments are based on targeted therapy. They target specific path­ways of the myeloma cells, disrupting their function and minimizing the damage to normal cells.

However, even with these targeted therapies, there is no free lunch. No cancer treatment is free of some downside or consequence. It is a necessary evil, a price that must be paid in order to fight the disease.

As a practicing physician, I was always acutely aware of the tremendous power of modern medicine. It has the potential to do great good, but also the potential to inflict great harm. I saw the good, the bad, and the ugly.

I think that is partly why, as a patient, I have always tried to be hypervigilant about my own care.

I am obsessive about following my labs in an effort to head off any potential problems. My liver, kidneys, and heart are subjects of great interest to me. I try to do everything I can to keep myself in good enough shape to tolerate the next round of treatment, whatever it might be.

I have to admit I have been very fortunate. Despite all of the treatments that I have undergone, I have man­aged to bounce back after each one. But I can’t help but feel each one takes a little chunk of me. I also know that one of these times I will not be as lucky.

With all that, there is only so much that can be done. The treatments have extracted their price and will con­tin­ue to do so.

Unfortunately, as in the military, collateral damage may be unavoidable.

Arnold Goodman is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.

If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .

Photo of Dr. Arnold Goodman, monthly columnist at The Myeloma Beacon.
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18 Comments »

  • April Nelson said:

    Excellent, excellent, excellent. We rarely hear or talk about the collateral damage. It is certainly a topic many oncologists would rather sidestep if they can. Thank you, Arnie, for saying it so clearly and articulately.

  • Andrew said:

    I wonder if you would mind sharing which of your liver enzymes were elevated, for what period of time and the levels?

    I ask because my AST and ALT have been elevated from time to time and I have an appointment with liver specialist in two weeks to explore the causes.

  • Terri J said:

    After diagnoses & treatment with Velcade & Dex for 4 months our 32 year old daughter had the gamut of tests to proceed with stem cell transplant. It was discovered that she had an irregular heartbeat which they attributed to the Velcade. Her transplant was postponed for 2 months & she is now on heart medicine along with Revlimid maintenance therapy.

  • Robert Zeiders MD said:

    Are you sure your hemochromatosis was due to your prior transfusions? Do you have excessive hemolysis of transfused red cells? I have had patients with hemochromatosis due to inappropriate overuse of prenatal vitamins and also from a contaminated well on farm property. I am a rheumatologist who also has multiple myeloma.

  • Matt said:

    thanks arnie, for highlighting the “non cancer” stuff. we all need to stay hyper vigilant as you say.

  • Steve Mohr said:

    Hi Arnie – as usual, an informative and great column. Over the last two years I have learned a great deal from you about this disease. I found this column particularly interesting as my dad died from hemochromatosis. It is interesting that both my dad and I ended up being afflicted with a blood disease. Good luck

  • Arnold Goodman (author) said:

    Thanks for the comments. Steve, sorry about your dad — scary stuff. Dr Zeiders, as an ENT surgeon I am not much of an expert on hemochromatosis, but there did not seem to be much question among my doctors at Moffitt about the cause. As I mentioned, apparently, unbeknownst to me, this is something they see not infrequently in the transplant population and transfusions are a pretty routine part of my life now. Terry, sorry to hear, but perfect example of collateral damage.

    Andrew in answer to your question, my liver enzymes seem to have been an issue intermittently for the last couple of years. Is my Alk Phosphatase, AST, and ALT. The worst has been the AST . In the 300-400 range at times. A drug called Actigal (uridiol), used to protect the liver post transplant, has also been helpful. The diagnosis was made by appearance on MRI findings and ferritin levels in the blood.

  • LibbyC said:

    Well said Arnie. I am ever hopeful of a free lunch – until that time comes I will continue to monitor my heart, liver, kidney, skin etc. All the best.

  • Jonah said:

    Thanks for your column, Arnie. As other already have mentioned, it’s educational in a number of ways.

    One thing that I would add, though, is that I think you may be understating it when you write that iron overload is “not uncommon” in people who are dependent on regular blood transfusions. As I understand it, iron overload is very common, if not almost a given, if a patient is transfused regularly for more than a year or two. I just found a review article from 2011, for example, that states: “Because humans lack any effective means to excrete excess iron, long-term transfusion alone inexorably produces the clinical problem of iron overload.”

  • R said:

    Arnie:

    Glad you got the bugger, and Glad you are on the Mend.

    With Wilson’s, usually the eye gives out a clue–no such clue in your case ?

    I’d say you owe a “Nice catch” to someone at Moffitt.??

    BTW–How is the elo­tuzu­mab treating you ?

    Take care.

  • Thomas said:

    Dr. Goodman, what do you think about the customization of drug dosage? In the clinical setting, mostly standard dosages are administred. I’m wondering, why there is not more research about going on about this topic in the scientific community? Or am I wrong? Couldn’t it be a fast & easy way to avoid some (not all) collataral damages? Some factors could be: weight, disease progression, genetic markup, MRI/CT scans etc. I just wanted to know, what’s your position as an experienced and well educated myeloma patient? Thank you and good luck for you! Thomas

  • Christel Sanders said:

    Sometimes I wonder what is best, being sick from the cancer or from the treatment? Thank you for your words, always good to know your collateral damage is not yours alone.

  • Mary Dee said:

    Arnie,

    So glad to hear that you have started your new treatment! Continued best wishes and success on this new route!

  • Nancy Shamanna said:

    Hi Arnie, Thanks so much for the informative column, with the really appropriate metaphor of ‘collateral damage’. I am sorry to hear about the ‘hemochromatosis’, following from the blood transfusions. Is there a treatment for this problem too? I hope so, and hope that your elotuzumab treatments are going well for you, and making a difference against your myeloma. Best wishes!

  • Arnold Goodman (author) said:

    Thanks. R, I’m glad it was diagnosed and a least somewhat treatable, but as you can see from Jonah’s comment above it should be a very routine diagnosis at a large transplant center. If anything I think it may have taken too long for it to be noticed. Thomas your issue regarding drug dosing is a very complex one. Certainly patient-specific dosing might help reduce some of the collateral damage and falls under “personalized medicine,” but as with other areas of personalized medicine, sorting out some of the variables above is very difficult. Most chemo drugs are dosed on weight or body mass index. Many other drug doses can be adjusted empirically if side effects become an issue. Again, at least for now, I think vigilance on the part of the patient is important and bringing up issues to the physician as they arise. Much more research interest in developing new drugs than in this type of work.

    To those who have been asking about the elotuzumab, the short answer is that at this point it is not working, but we are still trying to adjust the protocol and add other myeloma drugs to the mix. I will post more about this as I know more.

  • Pat Killingsworth said:

    Hey Arnie! I’ve got a magic portrait that works like Dorian Grey’s. I checked it out last week when we moved. People are always telling me I look good (for someone with cancer). But you should see my portrait. I’m guessing yours looks like mine; marred, scarred, black and blue. One curly sprig of hair sticking straight up on top. My cheeks are gaunt and cheek bones smashed. And you have a two year head and several more stem cell transplants to have smashed yours even more.

    Did I make you smile? Miss you, buddy! Glad you’re doing OK! Good luck to you and Dr. Anderson as you try and tweak your therapy using elotuzumab. Bet you’ll find something that helps!

  • R said:

    Arnie;

    Just back from my monthly Zometa / Lab draws…

    I hear ya.

    Keep kicking butt, my friend !

  • Maria said:

    Between you and Pat, I have learned so much about the beast! Thank you for sharing — it means so much to so many.

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