Lymphomatoid Granulomatosis

sembe

sembe said:

Hi Patty,

It's great news that Robert is still in remission and fingers crossed for April - Tony's letter says that he still needs to be on interferon for at least another year (no date given) as there is still some evidence of LYG. He's still on 7.5 million units and takes it three times a week. He's off to see a consultant on 4 March at the London hospital (Royal Brompton) that he went to before going to the cancer hospital (Royal Marsden) - probably for them to see how he's getting on. I think it's good for him to have all these appointments at different places, but probably this is because LYG is so rare.

I wonder how Fredda is getting on?

Best wishes

Shirley

Hi Patty and hope that all is well with Robert. It's great to hear from you Fredda and that your rituxin treatment is better than chemo and is only every few months.
Tony's white blood cells were low when he was on 10 units, so they're keeping him on 7.5. From now to July he will visit 3 hospitals(!), the one nearby for his interferon, another for his CT scan and again for the result, and the other hospital for a lung function test and another day for a talk to the consultant. These last two are just for their records, as they also want a copy of the CT scan sent to them. Tony may postpone the consultant chat cos if a letter with questions is sent to him, he could put the info they want in a letter back to them. So now he needs to keep an eye on the dates and where he's going.

Thinking of you often.

Shirley

pniro

sembe said:

Hi Patty and hope that all is well with Robert. It's great to hear from you Fredda and that your rituxin treatment is better than chemo and is only every few months.
Tony's white blood cells were low when he was on 10 units, so they're keeping him on 7.5. From now to July he will visit 3 hospitals(!), the one nearby for his interferon, another for his CT scan and again for the result, and the other hospital for a lung function test and another day for a talk to the consultant. These last two are just for their records, as they also want a copy of the CT scan sent to them. Tony may postpone the consultant chat cos if a letter with questions is sent to him, he could put the info they want in a letter back to them. So now he needs to keep an eye on the dates and where he's going.

Thinking of you often.

Shirley

Hi Fredda and Shirley,

We went down to the National Institute of Health a couple of weeks ago. Robert is still in remission, his lungs are still clear. We go back on July 17th, and his last interferon injection will be August 27th. He will have been on the interferon for a total of 19 months. It has been living h*ll but I am starting to see a light at the end of the tunnel. How are things going with Tony?

Patty

Fredda

pniro said:

Hi Fredda and Shirley,

We went down to the National Institute of Health a couple of weeks ago. Robert is still in remission, his lungs are still clear. We go back on July 17th, and his last interferon injection will be August 27th. He will have been on the interferon for a total of 19 months. It has been living h*ll but I am starting to see a light at the end of the tunnel. How are things going with Tony?

Patty

lymphomatoid granulomatosis
Dear Patty and Shirley,
Been thinking of you and Robert and Tony and hope all is going well. I have not been on my e-mail in ages. Patty, you mentioned that Robert's last visit to Washington was in August. Hope that all turned out well. Have you heard how Tony was doing? I am doing okay, have little energy, but I am not complaining. Just wanted to touch base with the two of you and tell you I am thinking of you and hoping for the best.
Fredda

pniro

Fredda said:

lymphomatoid granulomatosis
Dear Patty and Shirley,
Been thinking of you and Robert and Tony and hope all is going well. I have not been on my e-mail in ages. Patty, you mentioned that Robert's last visit to Washington was in August. Hope that all turned out well. Have you heard how Tony was doing? I am doing okay, have little energy, but I am not complaining. Just wanted to touch base with the two of you and tell you I am thinking of you and hoping for the best.
Fredda

Hi Fredda,
It is nice to
Hi Fredda,


It is nice to hear from you again. Robert has been in clincal remission since August...we go back in a few weeks since we have to follow the protocol pretty much forever. It has been wonderful the last few months...you do not realize how bad interferon is until it is out of your life. Robert is now off all of his meds and is feeling great. No I have not heard anything abou Tony...I hope he is doing well. How are you doing? I am sure you are tired, have you reached remission yet? What is the treatment you are on? Thinking of you and hoping you are doing well.

Patty

Fredda

pniro said:

Hi Fredda,
It is nice to
Hi Fredda,


It is nice to hear from you again. Robert has been in clincal remission since August...we go back in a few weeks since we have to follow the protocol pretty much forever. It has been wonderful the last few months...you do not realize how bad interferon is until it is out of your life. Robert is now off all of his meds and is feeling great. No I have not heard anything abou Tony...I hope he is doing well. How are you doing? I am sure you are tired, have you reached remission yet? What is the treatment you are on? Thinking of you and hoping you are doing well.

Patty

news
Dear Patty,

It was good to hear from you and hear that Robert is doing well. I am so happy to hear that news. I am in Sedona, Arizona, again for the Thanksgiving holidays. My kids and family come for Turkey Day. I am not in remission. The oncologist calls it "maintainance"--maintaining my lungs which have had no change since last year after having the chemo. I am now going for catscans and rituxin infusions every few months. The only problem I have been having is getting hemolytic anemia which means my immune system is destroying my red blood cells faster than they should. Steroids (prednisone), high doses of this, is what I have to take. I see my oncologist next week to see what is what. I do hope that Tony is doing all right. Again, thanks for telling me the good news about Robert and wishing you and family a wonderful holiday and a good new year.

Fredda

pniro

Fredda said:

news
Dear Patty,

It was good to hear from you and hear that Robert is doing well. I am so happy to hear that news. I am in Sedona, Arizona, again for the Thanksgiving holidays. My kids and family come for Turkey Day. I am not in remission. The oncologist calls it "maintainance"--maintaining my lungs which have had no change since last year after having the chemo. I am now going for catscans and rituxin infusions every few months. The only problem I have been having is getting hemolytic anemia which means my immune system is destroying my red blood cells faster than they should. Steroids (prednisone), high doses of this, is what I have to take. I see my oncologist next week to see what is what. I do hope that Tony is doing all right. Again, thanks for telling me the good news about Robert and wishing you and family a wonderful holiday and a good new year.

Fredda

Hi Fredda,
Sedona Arizona!!
Hi Fredda,

Sedona Arizona!! I have always told me husband that we will retire there some year. We went there before we were married about 17 years ago and fell in love with that place...of course we said we would go back...but life took over and we never got back. How did everything go with your visit to the oncologist? Robert and I went back to the NIH on December 11th, and he is still clean. we will go back again in 3 months. He is feeling really good, and I hope in a few years we can look back and say this was the roughest time of our life. I hope the doctors are able to achieve remission for you to give you and your family peace of mind. Keep me posted on your visit, and I hope for a healthy and happy 2009!

Patty

Elizabeth998

pniro said:

Hi Fredda,
Sedona Arizona!!
Hi Fredda,

Sedona Arizona!! I have always told me husband that we will retire there some year. We went there before we were married about 17 years ago and fell in love with that place...of course we said we would go back...but life took over and we never got back. How did everything go with your visit to the oncologist? Robert and I went back to the NIH on December 11th, and he is still clean. we will go back again in 3 months. He is feeling really good, and I hope in a few years we can look back and say this was the roughest time of our life. I hope the doctors are able to achieve remission for you to give you and your family peace of mind. Keep me posted on your visit, and I hope for a healthy and happy 2009!

Patty

Hello Fredda, Patty and Shirley
Hello All, my name is Elizabeth. I am up on the net researching LG. My Aunt, whom is 58 years old has just been diagnosed with LG this evening. She too began with very similar symptoms and was sick with cough for several months before visiting the doctor. An oncologist has been in to see her this evening to discuss treatment. His recommendation was to begin with Rituxan and follow up with chemotherapy. They have also ordered several scans of her head and other organs. A PET scan has also been requested, but is not available in the hospital where she is currently situated. My Aunt is not married and has no children. My cousin and I are looking for advice to help us to better advocate on behalf of my Aunt. I do look forward to any advice or insight to helping with this situation. Reading all of your previous posts and following the timeline of your posts is both disappointing and encouraging in the fact that you are all doing well and managing with your illness. We were told that this is a very rare disease. I can see that. There are only four people that I am aware of that have this disease on an internet that is surfed by billions and trillions of people a day. I appreciate anything you can share. Thank you.

Fredda

pniro said:

Hi Fredda,
Sedona Arizona!!
Hi Fredda,

Sedona Arizona!! I have always told me husband that we will retire there some year. We went there before we were married about 17 years ago and fell in love with that place...of course we said we would go back...but life took over and we never got back. How did everything go with your visit to the oncologist? Robert and I went back to the NIH on December 11th, and he is still clean. we will go back again in 3 months. He is feeling really good, and I hope in a few years we can look back and say this was the roughest time of our life. I hope the doctors are able to achieve remission for you to give you and your family peace of mind. Keep me posted on your visit, and I hope for a healthy and happy 2009!

Patty

lymphomatoid granulomatosis
Dear Patty,
I was happy to hear from you and to hear that Robert is in remission and feeling good. I got a good report at the oncologist's office. I am being "maintained". The Doctor does not say remission, but I will take it any way I can get it. I go for my rituxin infusions every 3 months, blood work every few weeks, hoping that my hemolytic anemia will not return, as well as catscans. I am feeling like my old self except that I do not have a lot of energy like I used to and I blame it on my age. I hope that Shirley's son is doing okay. I hope, too, that you and family will one day again visit the Southwest. Sedona with its red rocks is special. Wishing you and family a happy and especially a healthy New Year.

Fredda

Fredda

Elizabeth998 said:

Hello Fredda, Patty and Shirley
Hello All, my name is Elizabeth. I am up on the net researching LG. My Aunt, whom is 58 years old has just been diagnosed with LG this evening. She too began with very similar symptoms and was sick with cough for several months before visiting the doctor. An oncologist has been in to see her this evening to discuss treatment. His recommendation was to begin with Rituxan and follow up with chemotherapy. They have also ordered several scans of her head and other organs. A PET scan has also been requested, but is not available in the hospital where she is currently situated. My Aunt is not married and has no children. My cousin and I are looking for advice to help us to better advocate on behalf of my Aunt. I do look forward to any advice or insight to helping with this situation. Reading all of your previous posts and following the timeline of your posts is both disappointing and encouraging in the fact that you are all doing well and managing with your illness. We were told that this is a very rare disease. I can see that. There are only four people that I am aware of that have this disease on an internet that is surfed by billions and trillions of people a day. I appreciate anything you can share. Thank you.

lymphomatoid granulomatosis

Dear Elizabeth,

Since you have read our posts, you realize that it took forever to get a diagnosis. I did have infusions of rituxin in the beginning of my treatment and then chemotherapy was added to the rituxin. Rituxin is easier to tolerate than the chemo, but all went along okay with the treatments. I am now on rituxin every few months, along with catscans and blood work. I was diagnosed with stage 1. I am feeling better now than I have in a long time and hope it continues. I have no cough and when I do get tired I blame it on my age, not the disease. Let me know if you have any specific questions.

Fredda

pniro

Elizabeth998 said:

Hello Fredda, Patty and Shirley
Hello All, my name is Elizabeth. I am up on the net researching LG. My Aunt, whom is 58 years old has just been diagnosed with LG this evening. She too began with very similar symptoms and was sick with cough for several months before visiting the doctor. An oncologist has been in to see her this evening to discuss treatment. His recommendation was to begin with Rituxan and follow up with chemotherapy. They have also ordered several scans of her head and other organs. A PET scan has also been requested, but is not available in the hospital where she is currently situated. My Aunt is not married and has no children. My cousin and I are looking for advice to help us to better advocate on behalf of my Aunt. I do look forward to any advice or insight to helping with this situation. Reading all of your previous posts and following the timeline of your posts is both disappointing and encouraging in the fact that you are all doing well and managing with your illness. We were told that this is a very rare disease. I can see that. There are only four people that I am aware of that have this disease on an internet that is surfed by billions and trillions of people a day. I appreciate anything you can share. Thank you.

Hi Elizabeth,
I am very
Hi Elizabeth,

I am very sorry to hear about your aunt. This disease can be very scary due to the fact that it is so rare, and we basically have to rely on clinical trials to help us. My husband was diagnosed with Grade 2, and like Fredda said it was a long road to get that diagnosis. If you are in the US, the National Institute of Health is still enrolling patients in their clinical trial, I can not say enough about them there, and they have saved my husbands life. I never thought he would be in remission but he has been doing great now, and hopefully forever.

Sincerely,
Patty

pniro

Fredda said:

lymphomatoid granulomatosis
Dear Patty,
I was happy to hear from you and to hear that Robert is in remission and feeling good. I got a good report at the oncologist's office. I am being "maintained". The Doctor does not say remission, but I will take it any way I can get it. I go for my rituxin infusions every 3 months, blood work every few weeks, hoping that my hemolytic anemia will not return, as well as catscans. I am feeling like my old self except that I do not have a lot of energy like I used to and I blame it on my age. I hope that Shirley's son is doing okay. I hope, too, that you and family will one day again visit the Southwest. Sedona with its red rocks is special. Wishing you and family a happy and especially a healthy New Year.

Fredda

Hi Fredda,
I am scared
Hi Fredda,

I am scared sometimes to use the word remission but I would be happy with "maintained" as well. We go back in April for cat scans and blood work and nothing in between. I am glad you are feeling a bit better and hope it continues for you. I also think of Shirley's son since we have not heard from her in a long time.

Take care,
Patty

hi_there

pniro said:

Hi Elizabeth,
I am very
Hi Elizabeth,

I am very sorry to hear about your aunt. This disease can be very scary due to the fact that it is so rare, and we basically have to rely on clinical trials to help us. My husband was diagnosed with Grade 2, and like Fredda said it was a long road to get that diagnosis. If you are in the US, the National Institute of Health is still enrolling patients in their clinical trial, I can not say enough about them there, and they have saved my husbands life. I never thought he would be in remission but he has been doing great now, and hopefully forever.

Sincerely,
Patty

Which clinical trial?
Hi Patty,

I have a family member that they think has LYG. I have been reading all the posts and I checked the National Institute of Health website and saw lots of different references to LYG. What is the name of the clinical trial your husband is involved in? There were so many. I am trying to get information as quickly as possible because the hospital wants to begin treatment and we want to make sure we are getting the right treatment for the condition.

Thanks so much!
Marie

hi_there

pniro said:

Hi Fredda,
I am scared
Hi Fredda,

I am scared sometimes to use the word remission but I would be happy with "maintained" as well. We go back in April for cat scans and blood work and nothing in between. I am glad you are feeling a bit better and hope it continues for you. I also think of Shirley's son since we have not heard from her in a long time.

Take care,
Patty

Which clinical trial?
Hi Patty,

I have a family member that they think has LYG. I have been reading all the posts and I checked the National Institute of Health website and saw lots of different references to LYG. What is the name of the clinical trial your husband is involved in? There were so many. I am trying to get information as quickly as possible because the hospital wants to begin treatment and we want to make sure we are getting the right treatment for the condition.

Thanks so much!
Marie

P.S. Didn't know if you would see my other post so I thought I would ask here too.

pniro

hi_there said:

Which clinical trial?
Hi Patty,

I have a family member that they think has LYG. I have been reading all the posts and I checked the National Institute of Health website and saw lots of different references to LYG. What is the name of the clinical trial your husband is involved in? There were so many. I am trying to get information as quickly as possible because the hospital wants to begin treatment and we want to make sure we are getting the right treatment for the condition.

Thanks so much!
Marie

P.S. Didn't know if you would see my other post so I thought I would ask here too.

Hi Marie,
Before you do
Hi Marie,

Before you do anything definitely contact the NIH...they are the only ones doing a clincal trial on LYG. We are from the NY area...and contacted Memoral Sloan Kettering, Columbia and Johns Hopkins University Hospital...everyone of them told us to go to the NIH they are the experts on the disease. http://bethesdatrials.cancer.gov/Wilson/94c0074/default.aspx

I have inlcuded the website the tells you what his clincal trial is "Treatment and Natural History Study of Lymphomatoid Granulomatosis". We have received excellent care and continue to receive excellent care. The team is wonderful to work with.
I hope to hear from you soon...and I hope your family member gets the help he/she needs.

Patty

jmc

pniro said:

Hi Marie,
Before you do
Hi Marie,

Before you do anything definitely contact the NIH...they are the only ones doing a clincal trial on LYG. We are from the NY area...and contacted Memoral Sloan Kettering, Columbia and Johns Hopkins University Hospital...everyone of them told us to go to the NIH they are the experts on the disease. http://bethesdatrials.cancer.gov/Wilson/94c0074/default.aspx

I have inlcuded the website the tells you what his clincal trial is "Treatment and Natural History Study of Lymphomatoid Granulomatosis". We have received excellent care and continue to receive excellent care. The team is wonderful to work with.
I hope to hear from you soon...and I hope your family member gets the help he/she needs.

Patty

Anybody still active in this discussion?
I was diagnosed with Stage 3 Lymphomatoid Granulomatosis in April of 2009 after a few weeks of a misdiagnosis of lung cancer. I'm being treated at Mass General Hospital and I am now nearing the end of my treatment schedule. I am curiuos of those that have completed treatment, posibly similar to mine, and if you remain in remission.

pniro

jmc said:

Anybody still active in this discussion?
I was diagnosed with Stage 3 Lymphomatoid Granulomatosis in April of 2009 after a few weeks of a misdiagnosis of lung cancer. I'm being treated at Mass General Hospital and I am now nearing the end of my treatment schedule. I am curiuos of those that have completed treatment, posibly similar to mine, and if you remain in remission.

Hi,
My husband had Grade 2
Hi,

My husband had Grade 2 LYG, after months of misdiagnosis. He is being treated at the National Institute of Health in Bethesda Maryland. He was on alpha interferon for about 18 months. Their study requires you to continue on interferon for one year after clinical remission. He has been off all treatment for approximately 1 year this past August. We still visit down to the NIH every 3 months for check-ups. What type of treatment are you on at Mass General?

zzndm2

jmc said:

Anybody still active in this discussion?
I was diagnosed with Stage 3 Lymphomatoid Granulomatosis in April of 2009 after a few weeks of a misdiagnosis of lung cancer. I'm being treated at Mass General Hospital and I am now nearing the end of my treatment schedule. I am curiuos of those that have completed treatment, posibly similar to mine, and if you remain in remission.

jmc
I just found this site and learning to navigate. I thought I had replied but then it just went on its own. Here is what I said - hope it makes it to you.

I was diagnosed in 1978 and given a year to live. What I mostly want to tell you is that you should never give up hope. One cocktail I took daily was 150mg Prednzone plus 100mg Cytoxin. For me, this combo was good. So was daily prayer and determination to survive.

pniro

zzndm2 said:

jmc
I just found this site and learning to navigate. I thought I had replied but then it just went on its own. Here is what I said - hope it makes it to you.

I was diagnosed in 1978 and given a year to live. What I mostly want to tell you is that you should never give up hope. One cocktail I took daily was 150mg Prednzone plus 100mg Cytoxin. For me, this combo was good. So was daily prayer and determination to survive.

Hi zzndm2,
Have you been in
Hi zzndm2,

Have you been in remission since 1978? Do you still take Prednizone and Cytoxin? The only reason I ask is that my husband had been misdiagnosed with Wegener's Granulomatosis prior to getting the LYG diagnosis, and he was on both of those for 7 months. Have you ever had a reoccurance of LYG?

Thanks,
Patty

Fionna2108

zzndm2 said:

jmc
I just found this site and learning to navigate. I thought I had replied but then it just went on its own. Here is what I said - hope it makes it to you.

I was diagnosed in 1978 and given a year to live. What I mostly want to tell you is that you should never give up hope. One cocktail I took daily was 150mg Prednzone plus 100mg Cytoxin. For me, this combo was good. So was daily prayer and determination to survive.

LYG Diagnosis
Can you tell me where you were diagnosed with LYG, my beautiful sister who is 39 years old has been diagnosed with LYG Stage 3 in the Central Nervous System, Brain and Spinal Cord.

I embrace your determination and hope and this gives me strength for my sister and her young family.

pniro

Fionna2108 said:

LYG Diagnosis
Can you tell me where you were diagnosed with LYG, my beautiful sister who is 39 years old has been diagnosed with LYG Stage 3 in the Central Nervous System, Brain and Spinal Cord.

I embrace your determination and hope and this gives me strength for my sister and her young family.

My husband's LYG was in his
My husband's LYG was in his lungs...both lungs were affected. What is her prognosis and where is she receiving her treatment?