Anyone familiar with lymphomatoid granulomatosis?

Thank you so much for your reply. I'm sorry you're going through this. As well, it all started in November, and he had severe pneumonia and was intubated for 5 days. He went home, got better returned to work. Then in January he went back in because he had such high calcium levels. Then, in February he lost all motor skills, he could not move. It was like he was paralyzed, arms and legs. This is due to the lesions in his brain his spine and his lungs. He had one round of chemo was taken off of steroids, and then it returned again. In March, they did a biopsy. Couldn't figure it out then. They sent it to NIH and Dr. Jaffe is the one that determined the disease since then, his liver enzymes were too high and his platelets were too low to do any more chemo. His right leg gas clonus (severe shaking) which is really a hardship for him. Since then, he has built up and he will begin his 6 rounds of chemo next Friday. If this manages to get rid of all the lesions, then he will be having a stem cell transplant using his own blood, it's going to be a long journey .
Do they have you on steriods too?
I'm so sorry that you have this as well, although it's nice to be able to connect with someone. Keep going!!

@jvohnoutka Thank you for letting me know that you’re living with your son while he needs help. You may want to consider getting an aluminum walker that he can use when he feels a bit stronger. You can probably find one at a medical supply store or even Walmart. I so remember using one after I got home from the hospital. It gave me a sense of security.

@becsbuddy
Thanks. We are supplied with all of the items to help him.

@jvohnoutka
Did/do you have this disease as well?

@jvohnoutka I had DA-R-EPOCH and high dose methotrexate for my brain. I was one of the lucky ones I guess. I’ve been in remission now for a year. The disease/chemo has left me disable. Severe Neuropathy, and upper body limitations.

@daveab I’m now at the one year remission stage.

@jamie72
I'm so sorry to hear that you are disabled from this ugly disease; but am happy that you have been in remission for a year. May I ask how old you are?
Were you disabled before the chemo?
How many rounds of chemo dod you have?
The plan for my son is 6 rounds and then a possible stem cell treatment.

@jvohnoutka 53 years old
No I wasn't disable
6 rounds of DA R-EPOCH
4 rounds of high dose methotrexate
My upper body feels like it is in a cast.

Jamie72,
I am sorry to hear about your son. I came down with stage 3 LG in 2013. It looks like I was fortunate that I only had it in both lungs although the initial diagnosis was that it had spread to other internal organs as well. I initially went through (assuming I remember correctly), 6 rounds of CHOP-R and two additional rounds of just Retuxin. Unfortunately it had little effect. They then put me on Interferon Alpha but soon after told me that a tumor had wrapped itself around my airway and had already blocked one lung. I was given two weeks left to live so I agreed to go through 10 rounds of radiation therapy to eliminate the tumor. Around that time I went into remission for three months. A couple of years later I went through another 15 rounds of radiation for my other lung. My weight had dropped to 135 pounds so my Oncologist took me off of Interferon Alpha and sent a letter to my employer taking me off of work. I never went back as it took over nine months to get me weight back. In the meantime a good friend of mine had done research and recommended Hydrochloraquin (quinine pills, Vit D3, zinc and Vit C). I went into remission for the third time and still am four years later. I also credit my faith in Jesus and good friends. I worked (office work) the entire time even through chemo and radiation treatments until I was at 18% BMI. I hope that this helps and I pray that your son gets through this.

@jvohnoutka No. I have one that leaves lesions on my brain. Sounds awful, doesn’t it? I jut hope that you will not have any problems in caring for your son.