Fighting the unknown

[jeepnkaren]

I don't know who reads these posts but I am grateful and thankful for any advice. I have mold in my lungs and am on voricanazole. They say I got it by my compromised immune system and CLL. I have lymphoma in my lungs and liver which they say is not related to my leukemia. I will start a regiment of ivig and chemo alternating. Any advice?

[Cllcanada Top Poster CURE Hero]

Welcome Karen...

Bit foggy about a second lymphoma.... CLL is a lymphoma by WHO classification. Did they give this second lymphoma a type...?

Not knowing all the facts it is hard to give much advice. Do you know what type of fungi on the lungs? How are the treatments going? This sounds strange but fungal infections are not uncommon in immunocompromised CLL.

You mention chemo... do you know which one?

I would get a second opinion, prior to starting CLL treatment. The IVIG will help certainly and you may not require chemoimmunotherapy at this time...

All the best, let us know you city and perhaps others can suggest a CLL expert to review your case...

~chris

[jeepnkaren in reply to Cllcanada]

I have been receiving ivig for my leukemia for 2 years. The non Hogkins lymphoma is at present small but many. The mold is environmental in nature. I had no idea it was common with CLLPatients. So what do people do to help with that? The chemo treatment for the lymphoma recommended was rituxin with possible bendamuspine. I am in Atlanta. I'm all ears.

[jeepnkaren in reply to jeepnkaren]

I forgot to mention that I am on voricanazole for the mold.

[Cllcanada Top Poster CURE Hero in reply to jeepnkaren]

I would get a second opinion from Dr. Christopher Flowers...

Not only is he a CLL specialist, he also is a lymphoma specialist.

Link

winshipcancer.emory.edu/bio...

[SueVG]

I live in Atlanta and got a second opinion from Dr. Jonathan Cohen at Winship Cancer. I saw him for CLL treatment recommendation. Very knowledgeable. Set me on a good treatment path,

[Hoffy]

I would get a second opinion from here teaching hospital specializing in CLL and lymphoma . Could be another lymphoma similar to CLL like WM or Malt.

I know someone who has malt and has lung issues.

But the important thing is to see a another specialist for a 2nd opinion - know very little.