Anyone familiar with lymphomatoid granulomatosis?

Hello @jamie72, I honestly hadn't heard of this diagnosis. I'm sorry if you are hearing that a lot, being that it appears to be fairly rare. I glad that you've received some encouragement/support from the Autoimmune Disorders group. (https://rarediseases.org/rare-diseases/lymphomatoid-granulomatosis/)
Is the disease impacting your lungs?

I was diagnosed in July of 2013 with stage 3 LG. Twice in the first 4 years I was given two weeks to live and am now in my third remission. the first two remissions lasted only three months. This last remission is now in the third year. I was initially treated with CHOP-R. It only slowed the growth. I was then treated with Interferon Alpha for several years. During this time a tumor worked its way up my airway and had already blocked one lung. This led to a two week treatment of radiation therapy which was successful. A couple of years later the LG became much worse which led to radiation therapy on the other lung. Around this time, my weight had regressed from 215 pounds to 130 pounds which caused being taken off of Interferon Alpha. I had been to Mayo Clinic and Moffitt but was told there was no further treatment available. I then started to take the individual components of hydrochloroquin (Vitamin C.D3, Zinc and quinine pills). I started taking these right after going into my third remission and have been free of new tumors since. I credit my faith in Jesus, support from family, friends and work. The 11 years has been a real roller coaster to be sure. BTW - I worked all during those years until my Oncologist put me on leave when my weight hit 135 pounds. Unlike some blogs that I read at the time I decided to work and live my life. Yes, I was tired and sick especially from the chemo. I hope that this helps.

Thanks for the info Dave. I’m just starting down this journey and like you are holding on to my faith. I’m also still working, I’m a PM and Estimator for BELFOR Restoration which has been great to work for.
One of my mine concerns right now is the neurological damage done. I’ll for sure keep you updated and for sure will have more questions.
God bless you

I was diagnosed in July of 2013 with stage 3 LG. Twice in the first 4 years I was given two weeks to live and am now in my third remission. the first two remissions lasted only three months. This last remission is now in the third year. I was initially treated with CHOP-R. It only slowed the growth. I was then treated with Interferon Alpha for several years. During this time a tumor worked its way up my airway and had already blocked one lung. This led to a two week treatment of radiation therapy which was successful. A couple of years later the LG became much worse which led to radiation therapy on the other lung. Around this time, my weight had regressed from 215 pounds to 130 pounds which caused being taken off of Interferon Alpha. I had been to Mayo Clinic and Moffitt but was told there was no further treatment available. I then started to take the individual components of hydrochloroquin (Vitamin C.D3, Zinc and quinine pills). I started taking these right after going into my third remission and have been free of new tumors since. I credit my faith in Jesus, support from family, friends and work. The 11 years has been a real roller coaster to be sure. BTW - I worked all during those years until my Oncologist put me on leave when my weight hit 135 pounds. Unlike some blogs that I read at the time I decided to work and live my life. Yes, I was tired and sick especially from the chemo. I hope that this helps.

Also forgot to mention I’m going to NIH in Bethesda Md soon.

I was diagnosed in July of 2013 with stage 3 LG. Twice in the first 4 years I was given two weeks to live and am now in my third remission. the first two remissions lasted only three months. This last remission is now in the third year. I was initially treated with CHOP-R. It only slowed the growth. I was then treated with Interferon Alpha for several years. During this time a tumor worked its way up my airway and had already blocked one lung. This led to a two week treatment of radiation therapy which was successful. A couple of years later the LG became much worse which led to radiation therapy on the other lung. Around this time, my weight had regressed from 215 pounds to 130 pounds which caused being taken off of Interferon Alpha. I had been to Mayo Clinic and Moffitt but was told there was no further treatment available. I then started to take the individual components of hydrochloroquin (Vitamin C.D3, Zinc and quinine pills). I started taking these right after going into my third remission and have been free of new tumors since. I credit my faith in Jesus, support from family, friends and work. The 11 years has been a real roller coaster to be sure. BTW - I worked all during those years until my Oncologist put me on leave when my weight hit 135 pounds. Unlike some blogs that I read at the time I decided to work and live my life. Yes, I was tired and sick especially from the chemo. I hope that this helps.