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Pulmonary Lymphomatoid Granulomatosis

Gochop
Posts: 7
Joined: Dec 2009

Anyone currently receiving R-chop protocol for this diagnosis?

pniro
Posts: 43
Joined: Jul 2007

My husbands LYG was only in his lungs. He was misdiagnosed a lot prior to the final diagnosis. You can read my other posts...it is such a long story. He was (and is still a participant) in a clinical study at the National Institute of Health in Bethesda MD. From our knowledgethe only place in the US that is curretnly studying the disease. We learned that chemo will get a person into remission but unfortunately the disease comes back and usually is more dangerous when it reappears. We were treated with alpha-interferon for almost 18 months, and he has been in remission since Aug 2008. I should correct myself because my husband had Grade II LYG, if it was Grade III which is considered lymphoma...it would have been r-chop first, and then alpha interferon. If this is all too confusing for you...please let me know, and I will try to explain it better.
Sincerely,
Patty

brownderby
Posts: 4
Joined: May 2010

Hello - I just rejoined this site and wanted to check in with you to see how your husband is doing. You were both very helpful to me as I was considering the clinical trial at NIH and am happy that I am enrolled and being monitored by them.

David

pniro
Posts: 43
Joined: Jul 2007

I am so glad to hear from you. Robert and I talk about you every once and a while, and wondered how you were doing. I am glad that you enrolled in the trial...the team down there has been wonderful. Robert is doing well, he still goes down to the NIH every 4 months, and has had a clean bill of health each time. We go back next month...we look forward to our visits down there because we get to have a night out without the kids:).
So glad you reached out and stay well.
Patty

Fredda
Posts: 13
Joined: Jul 2007

I was diagnosed with LYG in my lungs, stage I, about 2 1/2 years ago, and had chemo and rituxin combination and then kept on rituxin infusions every 3 months. I go for catscans often. I am 74 years young and am doing good on my "Maintenance Program". My oncologist does not say remission, but rather says I am being maintained which I will accept. Hope this info helps.

Fredda

brownderby
Posts: 4
Joined: May 2010

I was diagnosed with LYG (stage 3 NHL) in May 2008 and underwent 6 rounds of R-CHOP chemo. I was told the disease was still present at end of treatments and enrolled in clinical trial at NIH (same as noted by PNIRO on this board -- hello again!). They did not start interferon treatments but monitored me every 3 months with CT scans and bloodwork. In Aug 09 was told that I was in remission and the thinking is that the R-CHOP chemo helped bring down the disease a bit and then my body's immune system kicked in to keep it under control. I am now feeling healthy and go to NIH every 6 months for checkups.

I hope you are doing well.

David

pniro
Posts: 43
Joined: Jul 2007

David...I am so glad that you did not have to go through the interferon treatments and the R-CHOP worked for you.

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