Anyone out there diagnosed with disseminated histoplasmosis?
That is my tentative diagnosis and I am completely shocked as I do not live in an endemic area, and haven't traveled to one, nor can I determine when or how I may have been exposed. Still in a state of shock and trying to figure it all out. Also feeling quite alone as I'm unaware of anyone in my area with this illness.
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I have stage IV breast cancer, and this last pet scan they saw something new in my lungs. They thought it was more metastasis, but instead it is histoplasmosis. I was started in Intraconazole, and my Ibrance (cancer drug) was reduced. My resilience is slipping with both drugs and I have to extend without the cancer drug for an extra week as my WBC and neutrophil levels are too low. I think they hope I can stay on for 90 days (I'm at 46 right now) and then they will shift to something easier. I have a pet scan after roughly 90 days, but my concern is that for future PET scans, how will they know if it is cancerous or histo?
@rocky92967, I'm sure you were relieved to find that the nodule wasn't metastatic cancer, but this comes with a whole new set of questions and uncertainty. I have CT scans every 3-4 months for my metastatic lung cancer. This has allowed us to monitor the histoplasmosis nodule, which is something that a non-cancer patient generally wouldn't have access to. The radiologist's reports note the nodule, placement and size. They are able to compare the current and previous scans. If they would happen to see a new nodule, I believe that we would assess the shape, the edges, and the size and we would weigh the risks or waiting for additional growth versus biopsy. It's never an easy decision.
For now, I get a view of my nodule every 3-4 months.
Yes I will continue with my PET scans every 3-4 months. So they didn't know it was histo until they did the biopsy. I guess my bigger concern is that the drug itraconazole interferes with my cancer drug Ibrance... and lowers my WBC and neutrophils a bit more, meaning I have to push out my meds another week. A week here and there will work but it does add to my anxiety. Yes, like you I have a regular scan to guide next steps. Mine wasn't a clear nodule - more like floaty clouds.
Susan - how did you do across time? did you get the histo out of your system?