For those of you who haven’t seen my post in the parents caring for the parent support thread, my dad has taken a turn for the worse. We thought he was going in 11 days ago for a simple procedure to clean out a little infection in the chest wound from his heart surgery in April. Don’t ask why it’s taken so long for this to happen. My family as well as Dad’s advocate have been worried for months and the doctors pooh-poohed us. Now we learn the situation is dire. His doctor feels he cannot survive this.
Dad has an overwhelming infection of candida to his chest cavity involving his sternum, ribs, and cartilage of sternum that is showing resistance to the strongest antifungal on the market. The doctor said yesterday , and I quote, " we are setting off a nuclear bomb of antifungal medication and it is not touching it, it just seems to grow more. " He thought one possibility was that Dad’s leukemia med, Tasigna, was supressing his immune system, but the oncologist doesn’t think that’s what’s going on.
We are disappointed and frankly appalled at the care Dad is getting at St. David’s Hospital in Austin (that’s where I was born and it’s a major hospital). The advocate would like us to consult with the best infectious disease specialist in the country. She is going to start searching but I want to, also. I know if our roles were reversed, Dad would move heaven and earth to help me. So I am wondering if anyone has ideas how I can locate someone. The advocate mentioned the “super doctors” list so I will try that. Other than that, I’m not sure what to do. We are also going to ask his doctor who he would send his wife to if she were in the same position.
Can he be moved to receive care? (like transported to another city or state) - or would you be seeking a not in person consultation?
I’m so sorry you are dealing with this. Your admiration and care for your dad has always been evident. <3 Hugs.
That list sounds like a good place to start. However I would think that the medical team at his hospital might also be more expert in guiding you more specifically where to go! None the less, you can think about the major health care institutions.
My one suggestion would be to investigate The Cleveland Clinic websites. Very large health system with multiple locations. A gold standard for many.
I am very sorry to hear about your dad’s condition. I suggest the Hospital at the University of Pennsylvania, or Mayo Clinic. We had personal experience at U Penn and were very impressed and thankful for their care. When we were dealing with a mystifying health issue two years ago, Mayo Clinic was suggested to us by a physician friend.
“Additional Data from Clinical Trials
The following drug-related adverse reactions are ranked under a heading of frequency, the most frequent first using the following convention: common (1% -10%), and uncommon (0.1%-1%) adverse reactions single events are captured as unknown frequency. For laboratory abnormalities, very common events (≥1/10) not included in Table 4 are also reported. These adverse reactions are included based on clinical relevance and ranked in order of decreasing seriousness within each category. Infections and Infestations: Uncommon: pneumonia, urinary tract infection, gastroenteritis, pharyngitis. Unknown frequency: sepsis, bronchitis, herpes simplex, candidiasis.”
Leukemia (and it’s treatment) heart surgery and advanced age are all factors that contribute to frailty that can make infections of any type more likely to occur and particularly hard to treat.
I would investigate the Houston hospitals, as well. It wouldn’t be as burdensome to get him there and the physicians usually have top reputations. Agree that UPenn is about as good as it gets (also Cleveland Clinic). I have utmost faith in Vanderbilt but don’t know a doctor in that particular specialty.
I know folks who had success with previously unresolved issues at Mayo and Cleveland. There are a couple of specialists at UPMC in Pittsburgh who did a great job of tapping into the global doctor network for a mystery (life-threatening) issue for a relative.
There is also a very specialized group at Stanford Hospital, but I think they focus more on extremely rare, chronic conditions.
But any of these could be a good place to start, if only because they make a point of being plugged into a network of folks who deal with unusual situations.
Thank you all so much. I will copy and paste all of your suggestions and send them to the advocate.
@tdy123, I already sent your post to the advocate. Her response was “Oh wow. Gosh.” She thinks it might explain what’s going on. She’s going to see if the oncologist was aware of these clinical trial results.
Once again, I’m blown away by the CC community. You are all wonderful.
I understand that not every doctor has the time to read every clinical trial for every drug they prescribe, but in this case, the link is to the prescribing label (something every prescribing doctor has a responsibility to read) for Tasigna, so the oncologist darn well should be aware.
Would it make sense for the doctor to contact the drug manufacturer? As a known side effect, perhaps they know history on treating the evasive candida?
Also the CDC has a link to this discussion of various Candida infections and possible ways to manage. “Clinical Practice Guideline for the Management of Candidiasis: 2016 Update by the Infectious Diseases Society of America”
Kantarjian is a MAJOR CML guy and has been in on the research since I started this journey. Other folks on that list who mention CML in their vitae: Jabbour, Naqvi, Ohanian.
I’d exploit the heck out of your dad’s connections to UT in banging on doors.
I am personally acquainted with an ID doctor at Baylor in Dallas. Her daughter and D2 went to school together. I don’t know anything about her competence, but if you need a name in Dallas, I would be happy to provide it. She might be good for a referral if nothing else.
Personally, I’d start with the cancer med angle and go from there.
Now we learn the situation is dire. His doctor feels he cannot survive this.