21 replies to this topic

[garfonzo]

Hi all. A recent heart scan showed a good heart but "several nodule infiltrates in the lower left lung". Going in for a more detailed scan now.
I thought maybe pleural effusion due to the Sprycel but they said it wouldn't show up that way.
My question here is can CML and its treatment, especially the early hard treatment with Hydroxyuria cause damage and thus scarring? I had a fairly heavy cml load. WBC 550k.
Diagnosed a little over 3 years ago. Blood counts and everything else are excellent. Very healthy otherwise. Certainly the chances of having CML and lung cancer both must be very low.
Thoughts ? Thanks in advance.

[kat73]

garfonzo - I wish I had something concrete to offer you - hopefuly someone else will.  All I can offer is that I've been through your experience about a dozen times, with different organs and different horrible possibilities.  Each time there is the shock between the minute before you knew anything was "wrong" and the minute after.  And then, the waiting and wondering.  It is emotionally ravaging and it never gets easier.  I can't think of any way the medical community could do anything about this, other than foster the insight born of empathy, and to make superhuman efforts to shorten that distance between discovery and the answer.  Hours are days, weeks feel like months.  Your mind has plenty of time to travel to very dark places.  They once found a spot on a chest x-ray for me and I had to wait weeks before another one was scheduled, on which the spot was NOT seen anymore, and I had to wait almost two weeks for that answer.  I am hoping for you that this turns out to be nothing, which is every bit as likely as something.  We are both cursed and blessed with diagnostic tools today that find EVERYTHING, the tall and the small.  Please come back and let us know!

[garfonzo]

Thanks Kat, yeah getting a call at 4:30 from a stranger telling me that I need to get with my doctor because of revised results was not kind.
Any ways I check my blood tests this week and noticed elevated lymphocytes and higher than my normal low wbc. I forget that I had a cold/flu several weeks back so maybe this is just results of an infection.
Getting ct scanned tomorrow.

[Trey]

Lung infiltrates can be the result of infections, but can also result from bleeding.  It could be from your recent infection.  Or it could be localized bleeding caused by the TKI drug (sort of like the eye bleeds).  I would just monitor it with scans to see if it goes away.  If it does, all is well.

[garfonzo]

Ugh getting a biopsy on it. Several nodules and infiltrates both sides. Will pray it's not a secondary cancer. I know that lung cancer incidents rise slightly with cml patients but I'm relatively young 46 and healthy. The pattern of nodules would normally suggest a spread from another cancer like colon cancer which I don't have any of that. The infiltrates indicate infection. So the onc is stumped. Not a classic lung cancer case. Going with the attitude to rule out cancer with the biopsy. Last thing we need right. Maybe my parrot has given me a bird lung infection.

[kat73]

Garfonzo - I hope you mentioned the parrot to the onc - it seems to me to be a very plausible source of a weird infection.  We can get lots of rare things from animals (think toxoplasmosis from cats, lyme and other tick-born diseases from deer,  etc.)  I don't know if there are slumbering versions of Legionnaires or TB, where people don't know they've been infected, but maybe that's possible.  Maybe an Infectious Disease specialist might be called in?  Definitely tell them all about your parrot!  The fecal material gets airborne as extremely small particles - an inflitrate-causing irritant, even if not an infectious disease?  Will be thinking about you and hoping for a good outcome!!

[garfonzo]

Yeah Kat he knows of the parrot. That was one of the questions asked of me along with any recent travel. Thanks for the thoughts. Should know by the middle of next week the biopsy results.

[garfonzo]

Well I do not have lung cancer thank God. Some sort of fungal infection. Not sure which one yet but the drug normally usedto treat is itraconazole for 6-12 months. It has a major interaction with my Sprycel. The drug class seems to increase concentration of Sprycel 4-5 times. Im at 100mg so maybe reducing to 20mg might even out everything. I'm at MMR 0.1 after 3 years finally.
So we have to look at options to continue to take a TKI and treat the fungal infection. Maybe worthy of its own thread.

[garfonzo]

This is the interaction verbage:
GENERALLY AVOID: Coadministration with inhibitors of CYP450 3A4 may increase the plasma concentrations and pharmacologic effects of dasatinib, which is primarily metabolized by the isoenzyme. In a drug interaction study of 18 patients with solid tumors, coadministration of dasatinib (20 mg once a day) with the potent inhibitor ketoconazole (200 mg twice a day) increased the dasatinib peak plasma concentration (Cmax) and systemic exposure (AUC) by approximately 4- and 5-fold, respectively, compared to administration without ketoconazole. Data are not available for dasatinib in combination with other CYP450 3A4 inhibitors.

MANAGEMENT: Concomitant use of dasatinib with potent CYP450 3A4 inhibitors should generally be avoided. Close monitoring for toxicity (e.g., myelosuppression, bleeding complications, fluid retention) and a reduction of dasatinib dosage to a range of 20 to 40 mg daily should be considered if there are no alternatives and concomitant use with these agents is necessary.

[rcase13]

Good news!

Funny world when getting a fungal lung infection is good news!

[garfonzo]

Yeah rcase I was the happiest new fungal patient my new infectious disease doc has ever seen this AM.

[jmoorhou]

So good to hear it's not serious.

[Buzzm1]

This is the interaction verbage:
GENERALLY AVOID: Coadministration with inhibitors of CYP450 3A4 may increase the plasma concentrations and pharmacologic effects of dasatinib, which is primarily metabolized by the isoenzyme. In a drug interaction study of 18 patients with solid tumors, coadministration of dasatinib (20 mg once a day) with the potent inhibitor ketoconazole (200 mg twice a day) increased the dasatinib peak plasma concentration (Cmax) and systemic exposure (AUC) by approximately 4- and 5-fold, respectively, compared to administration without ketoconazole. Data are not available for dasatinib in combination with other CYP450 3A4 inhibitors.

MANAGEMENT: Concomitant use of dasatinib with potent CYP450 3A4 inhibitors should generally be avoided. Close monitoring for toxicity (e.g., myelosuppression, bleeding complications, fluid retention) and a reduction of dasatinib dosage to a range of 20 to 40 mg daily should be considered if there are no alternatives and concomitant use with these agents is necessary.

garfonzo, sounds like a Catch-22; hoping there is an alternative treatment for your lung fungal infection but certainly glad it wasn't something much more serious

[kat73]

Oh, Garfonzo, I am SO HAPPY for you!!!!!  I have known of too many perfectly healthy, young non-smokers getting lung cancer - as much as we all had brave words for you, it was still a pretty huge worry.  I was wondering about you just this morning and hoped you'd post soon.  I was going to give you one more day and then private message you.  I also got good news on my test result, so now I can forget about espophageal cancer for a couple of years.  (And then go through the whole shebang again )  Do they have to grow something for a couple of weeks before they know what it is? Do they think it was the parrot?  I'm sure they're going to find a good way to treat you and keep fighting the CML at the same time.  These are just details!  So, so, so happy and relieved for you.

[hannibellemo]

garfonzo,

 

When you first mentioned the nodules and then when you mentioned you had a parrot my first thought was histoplasmosis. We had a huge outbreak of it here in the 50s and 60s when ground was disturbed for new construction.

 

Hope all goes well for you, fungal infections can be difficult to treat. Many long time residents still show nodules (inactive) in their lungs from the infection after all these years.

[garfonzo]

I will know next week if it is histoplasmosis or a second one I forget the name. Additional cultures will take several weeks to come back.
Yeah waiting for results is stressful. I was helped by my onc who said although the radiologist say it looks like lung cancer (every spot in an image is lung cancer to them) he didn't think it was. It just didn't look quite right to him. Of course googling just made the anxiety worse. I'm glad that's over until the next scan showing abnomalies right Kat? Glad your test is clean too.
So now got to figure out how to treat the fungi without messing with the Sprycel. Not a lot of options. The fungi drug class acts like grapefruit and increases the TKI levels 4-5 times. Hope I can just reduce from 100 to 20 mg and call it even.

[kat73]

Garfonzo - I had to laugh at what your doc said about the radiologist's comment.  Way back in 1979 it was discovered I had a couple of nodules on my thyroid.  With a radioactive iodine scan, one was "hot" and one was "cold."  The radiologist told me, well the cold one's probably cancer, but don't worry there's a good cure rate for thyroid cancer.  I was 27 and had just delivered my first child.  FREAKED OUT.  Called my PCP who said, "Ah, don't listen to those guys in radiology - they're all ghouls!"  Loved that word, have always remembered it.  He got a tearful laugh out of me.  (Turned out OK, btw, both benign but still had to have most of the gland out, in order to find out.)  Good luck with the fungus!

[garfonzo]

Well officially I have: "Pulmonary Cryptococcus due to underlying cml and dasatinib treatment"
Will be taking Fluconazole for a year probably. Starting with 400mg. This drug can increase the absorption of my Sprycel several times. I will reduce my 100mg to probably 20-40 to compensate. Will have to watch my PCR closely and for Sprycel toxicity.
It's going to be a wonderful year ;-)

[rcase13]

I am glad you have a diagnoses. Sometimes just not knowing is the worst. If they think it was caused by CML and the drug I am surprised they aren't switching you to something else. Although you seem to be doing quite well on Sprycel. Your at MMR which is great.

[garfonzo]

The theory of the infection disease doc is the fungus caught hold during my immune suppressed days and has been slowly growing. Plus the tki lowers our blood counts a bit although I don't subscribe to the idea of Sprycel being an underlying reason for an infection. It would be no different with another tki.
Or maybe it grabbed hold several months ago during a very stressful time in my life. Once our cml is under control most of us should have normal immune systems.
Anyways I would rather stay on Sprycel. At least there are several dosage levels.
Funny thing is right now I feel healthier, stronger, better than I have in 10-15 years.