Anyone out there diagnosed with disseminated histoplasmosis?

Posted by susan5051 @susan5051, Dec 18, 2018

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.

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

@lls8000

Hello @hoobuck75. I've had lung cancer for the past five years, so I have regular CT scans of my lungs. Over a year ago I had a 1 cm nodule appear and my doctors were all convinced that my lung cancer was progressing. A couple of biopsies later they diagnosed the nodule as histoplasmosis. An infectious disease doctor prescribed itraconazole for three months. My liver and kidney counts were impacted over those three months, so I did not remain on the meds any longer. The level of histoplasma in my blood stream was reduced while on the medication, but the nodule did not go away. It still appears on my CT scans (every 3 or 4 months), it has not gotten any larger, so my team is not concerned with it at this time. I wasn't experiencing symptoms, and if I wasn't scanned on a regular basis I may have never known about the histoplasmosis, but others can experience symptoms.
How long had you been on the itraconazole? Is there a plan to continue with that, or take you off of it?

Jump to this post

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?

REPLY
@rocky92967

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?

Jump to this post

@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.

REPLY
@lls8000

@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.

Jump to this post

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.

REPLY

Susan - how did you do across time? did you get the histo out of your system?

REPLY
Please sign in or register to post a reply.