Lymphomatoid Granulomatosis

Fionna2108

pniro said:

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?

Prognosis and treatment
My sister is British living in Sydney (where she is receiving treatment). Her prognosis is classed as 'unknown'. She felt so systemically ill before her treatment and now with treatment she seems to be giving up with life. Her treatment is agressive Chemo with Retuximab etc.

I am so worried about her as she has such a young family and had been so happy in her life before this. Recently she has stopped engaging with everyone and seems to be shutting down mentally, she is only half way through her treatment.

pniro

Fionna2108 said:

Prognosis and treatment
My sister is British living in Sydney (where she is receiving treatment). Her prognosis is classed as 'unknown'. She felt so systemically ill before her treatment and now with treatment she seems to be giving up with life. Her treatment is agressive Chemo with Retuximab etc.

I am so worried about her as she has such a young family and had been so happy in her life before this. Recently she has stopped engaging with everyone and seems to be shutting down mentally, she is only half way through her treatment.

As hard as it seems she can
As hard as it seems she can not give up. I know how debilitating this disease is, and from the sound of it she does have an extreme case of it. We were just down at the National Institute of Health last week for my husbands follow-up and they are so confident that this disease can be cured. And they do use the word cured with my husband. He was strictly on interferon b/c it was Grade II not III. I would imagine after your sister is done with this treatment, the next would be interferon to keep her in remission.

We too were in the same situation. We were coasting through life with our kids and then it was like we hit a brickwall. I had just given birth to my 3rd child days before we found out he was really sick. I shut down as well, but when I accepted the fact that this would be over and I had to do it for my kids sake I started to enjoy life. The interferon was hell for our family, and worse for my husband but he never gave up, continued to work, coach basketball and just roll with life.

I will keep our sister in my prayers and hope that she has the will to get through this, and she will get through it and will continue to enjoy life!

p.s. If you want any information on Robert's clinical trial please let me know and I can forward it to you. They have 65 people currently in the trial and they are making incredible advances in this disease.

Fionna2108

pniro said:

As hard as it seems she can
As hard as it seems she can not give up. I know how debilitating this disease is, and from the sound of it she does have an extreme case of it. We were just down at the National Institute of Health last week for my husbands follow-up and they are so confident that this disease can be cured. And they do use the word cured with my husband. He was strictly on interferon b/c it was Grade II not III. I would imagine after your sister is done with this treatment, the next would be interferon to keep her in remission.

We too were in the same situation. We were coasting through life with our kids and then it was like we hit a brickwall. I had just given birth to my 3rd child days before we found out he was really sick. I shut down as well, but when I accepted the fact that this would be over and I had to do it for my kids sake I started to enjoy life. The interferon was hell for our family, and worse for my husband but he never gave up, continued to work, coach basketball and just roll with life.

I will keep our sister in my prayers and hope that she has the will to get through this, and she will get through it and will continue to enjoy life!

p.s. If you want any information on Robert's clinical trial please let me know and I can forward it to you. They have 65 people currently in the trial and they are making incredible advances in this disease.

Hi

I am Fionna's sister in Sydney, she was showing me this site which is great, to hear all your stories.

I was initially diagnosed with MS and left at home deteriorating neurologically for a month, with weekly check ups!
I then spent 8 weeks in hospital & following a brain biopsy, LYG in brain & spinal cord only was diagnosed.
I have just finished round 5 of 6 of chemo, off the steroids as they think they are responsible for the depression.
The chemo/ situation/ illness has battered me, with depression , anxiety, loss of appetite, major weight loss, weakness, fatigue,insomnia, nausea, plus I still am unable to walk as I did before. The last MRI scan showed almost full remission, my body just needs to catch up. My mum & sister have flown out to help, my husband has almost been a single parent for the last 5 months. I find it tremendously difficult to deal with my 2 girls aged 2 1/2 and 6, as they are quite high maintainence!!
THere is light at the end of the tunnel,however, my rehab specialist/ neurologist see great improvement and see me back driving in the new year. Hasn't helped being so house-bound!Aiming to get back to work in New Year too!

My haematologist has Emailed Dr Wilson who has replied to ensure a correct diagnosis has been made!

Thank you for your comments. How are your husband and yourself doing?

pniro

Fionna2108 said:

Hi

I am Fionna's sister in Sydney, she was showing me this site which is great, to hear all your stories.

I was initially diagnosed with MS and left at home deteriorating neurologically for a month, with weekly check ups!
I then spent 8 weeks in hospital & following a brain biopsy, LYG in brain & spinal cord only was diagnosed.
I have just finished round 5 of 6 of chemo, off the steroids as they think they are responsible for the depression.
The chemo/ situation/ illness has battered me, with depression , anxiety, loss of appetite, major weight loss, weakness, fatigue,insomnia, nausea, plus I still am unable to walk as I did before. The last MRI scan showed almost full remission, my body just needs to catch up. My mum & sister have flown out to help, my husband has almost been a single parent for the last 5 months. I find it tremendously difficult to deal with my 2 girls aged 2 1/2 and 6, as they are quite high maintainence!!
THere is light at the end of the tunnel,however, my rehab specialist/ neurologist see great improvement and see me back driving in the new year. Hasn't helped being so house-bound!Aiming to get back to work in New Year too!

My haematologist has Emailed Dr Wilson who has replied to ensure a correct diagnosis has been made!

Thank you for your comments. How are your husband and yourself doing?

Hello in Sydney!
It is so nice to hear from you, and I am so glad that you realize you will get through this. All the symptoms you described my husband experienced on the drug alpha-interferon. It was an awful thing to go through, and having kids at the same time does not make life easier. My husband also had a really tough time keeping up with the kids, my son was just born when he got sick but I had 2 girls, that were 10 and 8 at the time so they understood a lot more than I am sure your girls. So they were helpful when he was too sick to get up the stairs, or to keep his eyes open. They also were well aware of the mind altering the drugs did too, but now I am happy to say that we can ALL look back and hopefully put this behind us.

Don't worry about your husband he will be fine while you take the time to get better, and most important regain your strength. My husband is doing wonderful now. I never thought that this time would come but it did and we are so grateful. He is able to play basketball, coach my daughter's basketball team, and do everything he did before. I am doing great as well. It was hard while Robert was so sick, but I had a lot of family, and also went to counseling by myself so I had someone to talk to. I can not thank Dr. Wilson and his team for actually studying LYG. I am sure people look at you with 2 heads when you tell them what you have, nobody has ever heard of it before.

I hope Dr. Wilson is able to help you out, his team is wonderful. Hang in there, and if you ever need to vent please post here and I will get back to you as soon as I can.

Talk to you soon,
Patty

luannee

pniro said:

Hello in Sydney!
It is so nice to hear from you, and I am so glad that you realize you will get through this. All the symptoms you described my husband experienced on the drug alpha-interferon. It was an awful thing to go through, and having kids at the same time does not make life easier. My husband also had a really tough time keeping up with the kids, my son was just born when he got sick but I had 2 girls, that were 10 and 8 at the time so they understood a lot more than I am sure your girls. So they were helpful when he was too sick to get up the stairs, or to keep his eyes open. They also were well aware of the mind altering the drugs did too, but now I am happy to say that we can ALL look back and hopefully put this behind us.

Don't worry about your husband he will be fine while you take the time to get better, and most important regain your strength. My husband is doing wonderful now. I never thought that this time would come but it did and we are so grateful. He is able to play basketball, coach my daughter's basketball team, and do everything he did before. I am doing great as well. It was hard while Robert was so sick, but I had a lot of family, and also went to counseling by myself so I had someone to talk to. I can not thank Dr. Wilson and his team for actually studying LYG. I am sure people look at you with 2 heads when you tell them what you have, nobody has ever heard of it before.

I hope Dr. Wilson is able to help you out, his team is wonderful. Hang in there, and if you ever need to vent please post here and I will get back to you as soon as I can.

Talk to you soon,
Patty

New here
I was reading the posts and have not seen a new post in a little while, is this board still active? My husband was diagnosed a year ago this week with stage 3. He pretty much has a similar story of diagnosis as what many of you have posted, but his treatment has been different. They started him off with R-CHOP which seemed to be helping, but then he started growing a new lesion (everything has been in the lungs for him) They changed to a new chemo and planned on doing a BMT (blood marrow trasplant) if this chemo was successful. It was a success and last July they did an autologous BMT as his own marrow was healthy. It was a long summer. His first 3 month checkup in October showed no sign of disease and he is at Mayo Clinic in Rochestor MN right now getting his next 3 month PET scan. We will have results tommorow. We have had all treatment done at Mayo (4 1/2 hour trip from our home). He has had a cold and runny nose with cough since Christmas which makes me a bit nervous. It is good to see there are other alternatives out there if he sometime is not in remission any more.

Gochop

luannee said:

New here
I was reading the posts and have not seen a new post in a little while, is this board still active? My husband was diagnosed a year ago this week with stage 3. He pretty much has a similar story of diagnosis as what many of you have posted, but his treatment has been different. They started him off with R-CHOP which seemed to be helping, but then he started growing a new lesion (everything has been in the lungs for him) They changed to a new chemo and planned on doing a BMT (blood marrow trasplant) if this chemo was successful. It was a success and last July they did an autologous BMT as his own marrow was healthy. It was a long summer. His first 3 month checkup in October showed no sign of disease and he is at Mayo Clinic in Rochestor MN right now getting his next 3 month PET scan. We will have results tommorow. We have had all treatment done at Mayo (4 1/2 hour trip from our home). He has had a cold and runny nose with cough since Christmas which makes me a bit nervous. It is good to see there are other alternatives out there if he sometime is not in remission any more.

My brother who has the same (stage 3) would like to chat.
Please contact me through this sight

Gochop

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.

Are You Still Checking this sight?
I have a brother with the same- will finish the r-chop in a few months. Are you doing o.k.?

Gochop

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.

My brother has this also.
Would like to compare notes

luannee

Gochop said:

My brother has this also.
Would like to compare notes

Hi,
My husband is the one
Hi,

My husband is the one who is dealing with this. His last check in January showed he is still in remission, no signs of cancer on the scans. He is also feeling good and although he still can tire after a long day is getting better all the time. He only did R-CHOP for a few cycles when they scanned him and noticed a new lesion. Apparanly the cancer had grown resistant to the chemo. I will have to check with him to see which chemo he went on next, but it put him in good enough shape to do the BMT. The hemotologist he sees at Mayo clinic in Rochester MN said he will need to have a PET scan every three months for two years, and if he remains in remission there is a good chance he will have beat this thing. The only place they found this cancer in my husband was his lungs, but they were both involved and quite franly things did not look good for him. He breathes fine now and the cough is gone. My husband also has Crohn's disease and they are thinking that one of the drugs he was on to lower his immune system to deal with the Crohn's may have been a part of why he got this cancer. He is now off the drug and his Crohn's has not acted up at all. At this point we are all looking to the future again and are quite optimistic that things will go well. How is your brother doing? Does he have a similar story?

Gochop

luannee said:

Hi,
My husband is the one
Hi,

My husband is the one who is dealing with this. His last check in January showed he is still in remission, no signs of cancer on the scans. He is also feeling good and although he still can tire after a long day is getting better all the time. He only did R-CHOP for a few cycles when they scanned him and noticed a new lesion. Apparanly the cancer had grown resistant to the chemo. I will have to check with him to see which chemo he went on next, but it put him in good enough shape to do the BMT. The hemotologist he sees at Mayo clinic in Rochester MN said he will need to have a PET scan every three months for two years, and if he remains in remission there is a good chance he will have beat this thing. The only place they found this cancer in my husband was his lungs, but they were both involved and quite franly things did not look good for him. He breathes fine now and the cough is gone. My husband also has Crohn's disease and they are thinking that one of the drugs he was on to lower his immune system to deal with the Crohn's may have been a part of why he got this cancer. He is now off the drug and his Crohn's has not acted up at all. At this point we are all looking to the future again and are quite optimistic that things will go well. How is your brother doing? Does he have a similar story?

Thanks For Your reply
My brother was also diagnosed with stage 3 in both lungs in about November of last year. He had a terrible cronic cough as well. He would like to talk about it with someone who is going through the same thing. He is being seen at the Mayo Clinic as well, only in Arizona. How old is your husband? Is he active on this site?
Gochop

luannee

Gochop said:

Thanks For Your reply
My brother was also diagnosed with stage 3 in both lungs in about November of last year. He had a terrible cronic cough as well. He would like to talk about it with someone who is going through the same thing. He is being seen at the Mayo Clinic as well, only in Arizona. How old is your husband? Is he active on this site?
Gochop

I did see the private message and responded there, but in case you don't get that I am posting here as well. My husband will be 50 in April, was 48 when he was diagnosed. I just talked to my husband and he would be willing to talk with your brother, I will give you his e-mail in the private post area and you guys can set something up!

pniro

luannee said:

I did see the private message and responded there, but in case you don't get that I am posting here as well. My husband will be 50 in April, was 48 when he was diagnosed. I just talked to my husband and he would be willing to talk with your brother, I will give you his e-mail in the private post area and you guys can set something up!

I am sorry that I have not
I am sorry that I have not been on in months but I have been recovering from spine surgery. My husband is actually the one who had LYG and is willing to talk about his symptoms, diagnosis and treatment. He has been in clinical remission since August 2008, he was never treated with r-CHOP just alpha interferon. His initial symptoms was dramatic weight loss, chronic cough, and had about 21 lesions in his lungs. He was 38 when he was diagnosed...if you still need any information, or need to talk to anyone please let me know and I can give you our number. My husband was treated at the National Institute of Health in Bethesda Maryland.

luannee

pniro said:

I am sorry that I have not
I am sorry that I have not been on in months but I have been recovering from spine surgery. My husband is actually the one who had LYG and is willing to talk about his symptoms, diagnosis and treatment. He has been in clinical remission since August 2008, he was never treated with r-CHOP just alpha interferon. His initial symptoms was dramatic weight loss, chronic cough, and had about 21 lesions in his lungs. He was 38 when he was diagnosed...if you still need any information, or need to talk to anyone please let me know and I can give you our number. My husband was treated at the National Institute of Health in Bethesda Maryland.

I am so glad to hear your
I am so glad to hear your husband is still doing well. My husband was the one who was treated with a blood marrow trasplant last summer. He has been in remission since the transplant with no medications. His Dr. at Mayo Clinic in Rochester Mn thinks that if he goes two years cancer free he has a good likelyhood of having beat this. My husband only had the cough, no weight loss or any other symptom. he was in stage three when they diagnosed him and it was very aggressive which is why they chose the transplant. It is good to know there are other options out there if someday this thing rears its ugly head again. I hope you are doing well from your surgery as well.

pniro

luannee said:

I am so glad to hear your
I am so glad to hear your husband is still doing well. My husband was the one who was treated with a blood marrow trasplant last summer. He has been in remission since the transplant with no medications. His Dr. at Mayo Clinic in Rochester Mn thinks that if he goes two years cancer free he has a good likelyhood of having beat this. My husband only had the cough, no weight loss or any other symptom. he was in stage three when they diagnosed him and it was very aggressive which is why they chose the transplant. It is good to know there are other options out there if someday this thing rears its ugly head again. I hope you are doing well from your surgery as well.

Hi There! We were also told
Hi There! We were also told that we should never see this again....I keep praying that is the case, and I really feel it is. We go back down to the NIH in June, we go every 4 months for right now. So glad that your husband is doing well.

jreiter70

pniro said:

Hi There! We were also told
Hi There! We were also told that we should never see this again....I keep praying that is the case, and I really feel it is. We go back down to the NIH in June, we go every 4 months for right now. So glad that your husband is doing well.

Hello All!
I just want to send out some encouraging words. In 2002, at the age of 27, my husband became very seriously ill with this disease. He was stage 3. To be honest, he was near death. Nothing I found on the internet was a very positive read.... No one in our local community has experience with this disease, so I contacted experts at major teaching hospitals that I found online, and they did not have anything too great about recovery either. I basically prepared myself that I would be a widow at 31, with a 6 month old baby. So many people were praying for us, that I believe a true miracle took place. That miracle was finding Dr. Wyndham Wilson at the National Insitute of Health in Bethesda, Maryland. My husband was too sick to commute to treatment so we had to move to the area for a year. Despite my husband's having this disease in his lungs, liver, kidneys, prostrate, brain, and spinal fluid, because of the care he recieved at NIH- and God's grace- he is alive and well today. :-) I can not say enough good about the clinical trial Dr. Wilson is conducting- NIH is an amazing place. He still goes back once a year. We are so thankful to God and Dr. Wilson. For any of you who are struggling with this diagnosis, feel free to contact me or my husband thru this site. Have faith!

pniro

jreiter70 said:

Hello All!
I just want to send out some encouraging words. In 2002, at the age of 27, my husband became very seriously ill with this disease. He was stage 3. To be honest, he was near death. Nothing I found on the internet was a very positive read.... No one in our local community has experience with this disease, so I contacted experts at major teaching hospitals that I found online, and they did not have anything too great about recovery either. I basically prepared myself that I would be a widow at 31, with a 6 month old baby. So many people were praying for us, that I believe a true miracle took place. That miracle was finding Dr. Wyndham Wilson at the National Insitute of Health in Bethesda, Maryland. My husband was too sick to commute to treatment so we had to move to the area for a year. Despite my husband's having this disease in his lungs, liver, kidneys, prostrate, brain, and spinal fluid, because of the care he recieved at NIH- and God's grace- he is alive and well today. :-) I can not say enough good about the clinical trial Dr. Wilson is conducting- NIH is an amazing place. He still goes back once a year. We are so thankful to God and Dr. Wilson. For any of you who are struggling with this diagnosis, feel free to contact me or my husband thru this site. Have faith!

Completely agree
I pray all the time for the staff at the National Institute of Health...especially the team that work with Dr. Wyndham Wilsons Team. They were and are miracle workers. We go every 6 months down to Bethesda and truly enjoy the staff and God Bless anyone dealing with LYG.

pniro

jreiter70 said:

Hello All!
I just want to send out some encouraging words. In 2002, at the age of 27, my husband became very seriously ill with this disease. He was stage 3. To be honest, he was near death. Nothing I found on the internet was a very positive read.... No one in our local community has experience with this disease, so I contacted experts at major teaching hospitals that I found online, and they did not have anything too great about recovery either. I basically prepared myself that I would be a widow at 31, with a 6 month old baby. So many people were praying for us, that I believe a true miracle took place. That miracle was finding Dr. Wyndham Wilson at the National Insitute of Health in Bethesda, Maryland. My husband was too sick to commute to treatment so we had to move to the area for a year. Despite my husband's having this disease in his lungs, liver, kidneys, prostrate, brain, and spinal fluid, because of the care he recieved at NIH- and God's grace- he is alive and well today. :-) I can not say enough good about the clinical trial Dr. Wilson is conducting- NIH is an amazing place. He still goes back once a year. We are so thankful to God and Dr. Wilson. For any of you who are struggling with this diagnosis, feel free to contact me or my husband thru this site. Have faith!

Completely agree
I pray all the time for the staff at the National Institute of Health...especially the team that work with Dr. Wyndham Wilsons Team. They were and are miracle workers. We go every 6 months down to Bethesda and truly enjoy the staff and God Bless anyone dealing with LYG.

J_K

jreiter70 said:

Hello All!
I just want to send out some encouraging words. In 2002, at the age of 27, my husband became very seriously ill with this disease. He was stage 3. To be honest, he was near death. Nothing I found on the internet was a very positive read.... No one in our local community has experience with this disease, so I contacted experts at major teaching hospitals that I found online, and they did not have anything too great about recovery either. I basically prepared myself that I would be a widow at 31, with a 6 month old baby. So many people were praying for us, that I believe a true miracle took place. That miracle was finding Dr. Wyndham Wilson at the National Insitute of Health in Bethesda, Maryland. My husband was too sick to commute to treatment so we had to move to the area for a year. Despite my husband's having this disease in his lungs, liver, kidneys, prostrate, brain, and spinal fluid, because of the care he recieved at NIH- and God's grace- he is alive and well today. :-) I can not say enough good about the clinical trial Dr. Wilson is conducting- NIH is an amazing place. He still goes back once a year. We are so thankful to God and Dr. Wilson. For any of you who are struggling with this diagnosis, feel free to contact me or my husband thru this site. Have faith!

Giving a shout out to Dr. Wilson and his Team!
Hi all,

I stumbled across this site. I was diagnosed with LYG in early 2002. I too received treatment from Dr. Wilson and the wonderful staff at NIH. Knock on wood, I have been in remission since 04-05 and no longer need to go back for the annual check-ups. Keep the faith and while LYG is a hard dx, I do believe NIH has a handle on this one.

Here's a nod to science and the team at NIH.

Thanks.

Danielle369

jreiter70 said:

Hello All!
I just want to send out some encouraging words. In 2002, at the age of 27, my husband became very seriously ill with this disease. He was stage 3. To be honest, he was near death. Nothing I found on the internet was a very positive read.... No one in our local community has experience with this disease, so I contacted experts at major teaching hospitals that I found online, and they did not have anything too great about recovery either. I basically prepared myself that I would be a widow at 31, with a 6 month old baby. So many people were praying for us, that I believe a true miracle took place. That miracle was finding Dr. Wyndham Wilson at the National Insitute of Health in Bethesda, Maryland. My husband was too sick to commute to treatment so we had to move to the area for a year. Despite my husband's having this disease in his lungs, liver, kidneys, prostrate, brain, and spinal fluid, because of the care he recieved at NIH- and God's grace- he is alive and well today. :-) I can not say enough good about the clinical trial Dr. Wilson is conducting- NIH is an amazing place. He still goes back once a year. We are so thankful to God and Dr. Wilson. For any of you who are struggling with this diagnosis, feel free to contact me or my husband thru this site. Have faith!

LYG
I was diagnosed with LYG in Feb. and was referred to Dr. Wilson and his team at NIH. I started my treatment the very beginning of March and and getting ready for round 3 later this week. It has been very hard, and I am looking for others who have been through this that can help and encourage me along. Anyone out there see looking at these discussion boards?

Danielle

Danielle369

jreiter70 said:

Hello All!
I just want to send out some encouraging words. In 2002, at the age of 27, my husband became very seriously ill with this disease. He was stage 3. To be honest, he was near death. Nothing I found on the internet was a very positive read.... No one in our local community has experience with this disease, so I contacted experts at major teaching hospitals that I found online, and they did not have anything too great about recovery either. I basically prepared myself that I would be a widow at 31, with a 6 month old baby. So many people were praying for us, that I believe a true miracle took place. That miracle was finding Dr. Wyndham Wilson at the National Insitute of Health in Bethesda, Maryland. My husband was too sick to commute to treatment so we had to move to the area for a year. Despite my husband's having this disease in his lungs, liver, kidneys, prostrate, brain, and spinal fluid, because of the care he recieved at NIH- and God's grace- he is alive and well today. :-) I can not say enough good about the clinical trial Dr. Wilson is conducting- NIH is an amazing place. He still goes back once a year. We are so thankful to God and Dr. Wilson. For any of you who are struggling with this diagnosis, feel free to contact me or my husband thru this site. Have faith!

LYG
I would love to be able to get advice about LYG, as I started my battle with it at the beginning of March. Let me know if we can be in contact.

Danielle