Birds In Spring: Turning Simple Into Difficult
I thought I’d tell a little story related to an aspergillus fungal infection that beset me before my first stem cell transplant.
What I’m going to recount here has less to do with the fungal infection than it is a cautionary tale.
In a dark way, this story can be somewhat amusing, but the absurdity only gets humorous in the retelling, not in the actual experience.
The aspergillus came along with something called bronchiolitis obliterans with organizing pneumonia, or BOOP. That there’s even an illness that’s called BOOP is kind of funny in itself.
On one evening back in 2006 when I was on my second cycle of Velcade (bortezomib), Doxil (doxoburicin liposomal), and dexamethasone (Decadron), known as VDD, I was heading for the shower and noticed these odd rings on my chest. They looked like what you’d find on a wood table if someone set a wet glass down on it for too long.
“Now what?” I thought. During chemotherapy, of course, that’s not an unusual question. We all know that treatment drugs bring along side effects.
So, I called out to my wife, Linda., I pointed to these rings and muttered something like, “What the heck is this?”
After checking them out, she said, “Looks like ringworm.”
Great.
The next day I had an appointment scheduled with my nephrologist who was keeping a watch on my recovering kidneys after multiple myeloma had “insulted” them, as my doctor at Memorial Sloan-Kettering (MSK) had put it.
On the way, I dropped into my local oncologist’s office and asked if one of the nurses could take a moment to check out my rings.
After a bit, a nurse called me out of the waiting room and into a hallway and said, “So what’s up?”
Since she seemed to have no intention of putting me in an exam room, I pulled up my shirt and showed her. In the hallway.
She looked the rings over and said, “Yep, looks like ringworm.”
And that’s it. Nothing more.
To break the deafening silence, I finally asked, “Well, what do we do about it?”
Apparently there was no “we” in what was to be done.
“You need to see your primary care physician,” she said.
I was in a doctor’s office – oncology-hematology practice aside – shouldn’t they know what to do about ringworm?
I reminded her that I was between primary care doctors, given that the last one failed to figure out what was wrong with me (actually, failed to even try), while my condition deteriorated over several months with rampant myeloma plasma cells spreading uncontrollably through my bone marrow.
I’d ended up as an emergency admission to Sloan’s Memorial Hospital for almost two weeks, and I really hadn’t had time to look for a new primary care doctor. And I certainly wasn’t going back to the last one.
Getting a new primary care physician wasn’t a priority, since I was a bit busy trying to stay alive.
Actually, I just thought all that. What I said was, “I don’t have a primary care physician.”
I don’t recall how the remainder of the conversation went. except that it was exasperating and went nowhere. I remember her turning around and walking away down the hall, leaving me without a solution to my ringworm.
This was my first hint that perhaps this overly big oncology practice might have lost touch a bit with its patients.
On to the nephrologist.
Toward the end of my appointment, I said to him, “I apparently have ringworm. Got any ideas?” Now, don’t take this the wrong way, because my kidney doctor is wonderful. But with the ringworm question, he simply gave me a look that said, “Hey, I treat kidneys.” He was sympathetic, but admitted he really wouldn’t be the right person to address a fungal infection of the skin.
Out in the parking lot, I called my MSK doctor’s office and got on with one of the nurses. She was great. She was understanding. But she said, “I’m not there.” She was reluctant to diagnose and treat something like this over the phone. I was reluctant to drive 150 miles to see her.
We hung up. I called my local oncologist and got on the line with a different nurse. She was more alert to the problem and told me to come by the office again. She sounded perplexed about why I was sent away without a solution earlier. She took another look at my rings. Another, yep, it’s ringworm. She told me to go to the drug store, buy an antifungal cream, and apply it until the ringworm went away. I did, and eventually, several weeks later, it went away.
With the benefit of hindsight, we probably all should have been a bit more alarmed about the ringworm attack.
My excuse is that at the time this happened, I was brand-new to this whole cancer treatment thing, not to mention being caught in the whirlwind at the time of having just gotten my diagnosis.
In my initial VDD treatment, among the drugs I was taking prophylactically was an antifungal medication. Obviously, in retrospect, it wasn’t working, because there I was presenting with an incipient fungal infection of the skin.
Perhaps if we’d all been paying more attention, we might have changed to another antifungal drug. Maybe we’d have avoided the aspergillus that invaded my lungs a few months later and the BOOP that accompanied it, causing considerable chaos on the eve of my first transplant, delaying it by about four months.
Just a little note about aspergillus: It’s a common fungus, often found in decaying vegetation (those dead leaves and maybe the compost pile in your backyard, for example), and it rarely affects people with normal immune systems. It usually responds to treatment. Sometimes, it doesn’t, and, well, then it’s just one more complication from which myeloma can bring about one’s demise.
Lou Ganim is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Sorry about your experience with your 'primary care physician'. All PCP's are not the same, and I hope you can find an experienced Family Practice physician who has completed 3 full years of residency. We know dermatophyte skin diseases, can diagnose heme diseases (or at least 'try'), and most of us have more empathy than the one you were apparently seeing. Oncologists and nephrologists only know their own important....but very tiny.... area of medicine, which is why the oncology nurse "turned away and walked down the hallway". You need a caring physician who knows a whole lot about a whole lot of things and has a wide spectrum of medical education. Your fine essay shows the value of fully trained Family Practice physicians. Good luck to you. Jim Omel MD
My very competant PCP, a Family Practice Physician, found my MGUS based only on a small amount of protein in my urine and a high SED rate plus my complaints of bone pain. She sent me to a hematologist at Oregon Health Science University (OHSU) where my family doctor is located too. The hematologist confirmed the diagnosis and now checks me every 3 months. Thanks to my great doctors if I ever convert to MM I will be at a very early stage. I always prefer to get doctors at large medical centers with medical schools. I find they keep up with the latest medical findings.
You are in my prayers Lou, along with everyone suffering with MM and its precursors. I hope you find a new PCP that takes great care of you!!
Blessings,
Toni
I would add that for those who may use, or might be considering the use of medical cannabis, Aspergillus can be a real concern, particularly if the cannabis is eaten or vaporizied by the patient. Smoking cannibis can be a bit less risky due to the burning of the substance, but if the patient has a compromised immune system then simply handling cannabis that contains fungus or mold can easily infect the patient. Just a FYI.
Sorry about all of the confusion you experienced but I also experienced the ring worm merry go round, I am on revlimed and prednisone and these do cause various rashes. On my left forearm , one of the pimple like bumps seemed to multiply into several . There was no apparent circle when my oncologist and the nurse looked at it. A few days later it grew from dime size to a fifty cent piece size. It looked like ringworm but it also had pus. GROSS. I bought some anti fungus meds and I happen to have a prescription antibiotic cream. I nursed it back to health myself. When I showed it to my oncologist my last dr visit, she said yes it did diffinitely turn into ringworm . The circle is still there but not raised anymore but there is still one pimple that doesn't want to go way. Thanks for sharing,
Lou,
What an ordeal to have to go through. I find the care you received from the oncology nurse unprofessional, particularly since most people report how caring and attentive the cancer center staff generally are. As for the PCP, I'm amazed at how long it took you, and many others to be diagnosed. I know someone that went more than a year before they figured it out.
p.s. an anti-fungal column was not in my plans.
Lou
I agree with Kevin. Highly unprofessional.
That staff made no effort to help you, despite them being the ones who have prescribed immunosuppressive agents that are highly likely to result in bacterial/viral/fungal infections?!!! wtf?
IOW's all credentialed medical staff should have the training/expertise to effectively treat adverse events due to their prescribing habits independent of their sub-specialty expertise. They are responsible to treat you. At the very least they should have prescribed a prescription anti-fungal and clinically are suspect, for not recognizing that they were already prescribing an anti-fungal prophylactically.
Unbelievable.
I do not understand the attitude that says, well since this 'adverse event' is outside my expertise I have no obligation to treat this patient. Who does that with a good conscious. How do you go 4 years to medical school, 3 years residency and 2 years fellowship and lack the clinical expertise to treat a fungal infection which are NOT uncommon in CANCER patients?!!
Do these folks just not give a hoot?
Dr. Omel --
Thanks for your comments. I am sure that overall PCPs are very good. At the company where I work, we have a D&TC in Manhattan and the docs there are terrific, particularly this one. It's just that my experiences with PCPs over the years haven't been so hot -- just unlucky I guess. I am happy though with the PCP I've had now for a few years. The one I had who'd failed to diagnose myeloma (you know, he never did) as I deteriorated failed mostly in lacking any effort to find out what was wrong with me, and having absolutely no sense of urgency.
And there's another point too. At MSK, they are willing, and able, to tackle anything that I confront, including things that end up not being cancer-related. At Sloan, everything they do is in the context of my disease and my tendency now is to consider most all of what besets me to maybe be related to myeloma, until proven otherwise. I tend to go to my nurse, or someone, at MSK first now with any problem with that I have. They never shoo me away, and are really responsive. While the PCP I have now may be great, he doesn't have that same myeloma perspective. And, actually, he understands that. A big reason why I like him.
Toni -- Isn't it great to have a competent, concerned and caring PCP? Wish I'd had one when myeloma started to become evident. I could have been diagnosed based on a lab result that my PCP got in July of 2005 (I wasn't diagnosed until May 2006). But he was checking specifically in 2005 on something else, and I guess he never bothered to run down the various other results that came along with the things he was looking at -- even though the particular item that might've led to a much earlier diagnosis was flagged on the report. I'll look at the bright side: Because I was so far gone, I ended up being treated by a world class myeloma specialist, with whom I have a long-standing, ongoing professional relationship even though he is no longer my primary myeloma doctor.
Steve -- Here in New York, Dick Gottfried, who heads the state Assembly's Health Committee has a big push on right now to get medical marijuana legalized. Your advice, though, seems to be that it might not be a good idea for myeloma patients to "blow a little dope," as we used to say in the '70s.
Hi Kevin -- After my condition stabilized, one of the first things I did was drop the local oncology practice I'd had, partly because of the incident I related, and others, and get another doctor. I chose an oncology-homotology group in Saratoga Springs. I cannot overstate how great they are. They are ones who had to deal with all those urgent medical crises that erupted in the months after my stem cell transplants and they were there immediately no matter what time or day it was. And, by the way, could you send me what you're planning to write about maybe a week in advance, so I could, um, consider it? (Sorry folks, this a private joke between me and Kevin the Usurper).
Suzirose -- Thanks for the great post...as usual. Who the heck knows why people do the things they do. I think that particular practice has a lot of shortcomings, and that's why I'm no longer with them. Someday maybe I'll relate how an after-5 p.m. phone call from my MSK doc was handled by this particular upstate doctor's office. The look on my NYC doc's face was priceless.
Music Meme -- Amazing all the things that beset us myeloma patients, huh? I hope your ringworm resolves itself completely.
hi Lou, That was a cautionary tale about immunities, and witty too! did you by any chance get all of your vaccinations back again after your SCTs? iI did get the pneumococcal vaccine, which has about a dozen strains in it to be protected against. yes, I will write a column about that one day! (please excuse my typing...am traveling again and using an iPad). but seriously, you just have to be 'proactive' as a patient, and keep seeking help sometimes! the whole problem with the SPEP not being done routinely as part of an annual checkup means that many MM patients won't get diagnosed in a timely fashion. of course, for many patients, they did have that test, and so found out about their SMM or MGUS.
Lou, Glad to see your column back. An interesting topic; all patients run into this problem at some point. There is incompetence everywhere. You have to be your own advocate as far as your health is concerned. I'm a caregiver so I consider that part of my role. That nurse sounds like a jerk. She would've heard about it from me and so would her supervisor. I can't believe a dermatologist or someone didn't see you for your skin infection. Everyone at MSK seems to be an expert; don't be afraid to speak up for what you need, especially when you drive so far to get there. They are also very busy people. They don't always focus on the little details we caregivers and patients do. And this is not due to incompetence; they are just so busy. They need a reminder. Glad you found a new PCP. I've been through 3 myself in the last few years. There are a lot of good ones out there. Sometimes you have to look harder to find what you need. Not when you are fighting undiagnosed MM, though. That was really bad timing. Hope you continue to do well.
Hi Nancy -- Thanks as always for your very kind comments. The only post-SCT "vaccinations" have been the pneumonia one, and the annual flu shot. We've done HLAs after the first ones, and the shots really didn't convey and restore a whole lot of immunity. I read somewhere that I ought to consider getting two flu shots -- separated by a couple of weeks -- because of my lousy immune system.
Brenda -- Yes, getting a good PCP seems to be more difficult than you'd think it should be. In the particular story here, MSK was really helpful -- they weren't the bad guys here in any way whatsoever. The nurse you describe aptly as "a jerk," was at my former local oncologist's office, not MSK. Actually, I can't say enough about how responsive MSK is to me about any concern I have and readily sends me off to another specialist if need be to address my problem. Nobody's perfect, but if I call with a problem they jump to it.
Hi Lou,
Glad to hear you are no longer with those insensitive (at best) and incompetent (at worse) clinical derelicts.
Um..Agent D is here giving me a briefing..so sorry if this sounds like, um abrasive..but you know Agent D doesn't believe in subtlety..hehehehe..Agent D believes in going for the jugular..he/she reminds me of Jack Webb...'just the facts, mam"...if you are young enough to remember him and the Borax commercials...lol