CSN Login
Members Online: 17

Lymphomatoid Granulomatosis

pniro
Posts: 43
Joined: Jul 2007

My husband has been battling Grade II Lymphomatoid Granulomatosis for a long time now. Has been on Alpha Interferon for 7 months, and found out recently he will be on it at least another 13 months. Anyone out there have this disease, or have handled interferon?

Fredda
Posts: 13
Joined: Jul 2007

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

pniro
Posts: 43
Joined: Jul 2007

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
Posts: 2
Joined: Mar 2009

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
Posts: 43
Joined: Jul 2007

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
Posts: 1
Joined: Aug 2009

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
Posts: 43
Joined: Jul 2007

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
Posts: 1
Joined: Sep 2009

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
Posts: 43
Joined: Jul 2007

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
Posts: 4
Joined: Sep 2009

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
Posts: 43
Joined: Jul 2007

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

Fionna2108
Posts: 4
Joined: Sep 2009

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
Posts: 43
Joined: Jul 2007

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
Posts: 4
Joined: Sep 2009

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
Posts: 43
Joined: Jul 2007

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
Posts: 4
Joined: Jan 2010

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
Posts: 7
Joined: Dec 2009

Please contact me through this sight

Gochop
Posts: 7
Joined: Dec 2009

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

Gochop
Posts: 7
Joined: Dec 2009

Would like to compare notes

luannee
Posts: 4
Joined: Jan 2010

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
Posts: 7
Joined: Dec 2009

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
Posts: 4
Joined: Jan 2010

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
Posts: 43
Joined: Jul 2007

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
Posts: 4
Joined: Jan 2010

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
Posts: 43
Joined: Jul 2007

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
Posts: 1
Joined: Apr 2011

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
Posts: 43
Joined: Jul 2007

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
Posts: 43
Joined: Jul 2007

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
Posts: 1
Joined: Aug 2011

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
Posts: 2
Joined: Apr 2012

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
Posts: 2
Joined: Apr 2012

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

pniro
Posts: 43
Joined: Jul 2007

Hi Danielle...it has been a long time since I have been on this site. How did you handle the treatment? What stage was your LYG? My husband had it in his lungs and was Grade II, so his treatment was alpha-interferon. That was a really rough period but we managed to get though it.

Patty

alisa d's picture
alisa d
Posts: 10
Joined: Oct 2012

it is very encouraging hearing that all of your family members have seemed to overcome or at least recover some normality from this disease.i have done research on lyg because my husband was diagnosed about 8 months ago after being misdiagnosed many times,none of the info i,ve found online seems to be very encouraging at all in fact almost everytime i google lyg looking for the newest info on it i find myself sobbing at the statistics .my husband completed r-chop chemo which worked while he was on it, but after about 6 weeks of no chemo he became symptomatic again,losing weight,coughing,feeling bad.he was then put one a chemo called r-ice with the r in each standing for rituxin..his dr.has yet to mention interferon or bone marrow transplant but we are willing to do whatever it takes to save his life. he is only 28 years old and was a picture of health before he started getting sick from lyg.needless to say this diagnosis has completely changed our lives and has thrown him into an understandable bout of depression.before i read this i was sure this was an uncurable,unsurvivable diagnoses as the statistics i,ve found give a 90% mortality rate within 5 yrs. your stories have given me more hope and help than the 8 months of online research ive done

god bless and keep you all
alisa

brownderby
Posts: 4
Joined: May 2010

The hope you have is real. Don't believe all of the statistics. I was diagnosed with grade 3 LYG in May 2008, and also researched the 90% mortality rate. I am now in remission. I went thru R-CHOP chemo and it was still there. Enrolled in the NIH clinical trial but didn't start interferon treatments as they wanted to observe for a bit. After 9 months of untreated observation, the scans came back clean and they said I was in remission. No simple answers, but I take the results. The team at NIH is great, and very focused on LYG like nowhere else. I have gone from visiting every 3 months down to 6 months and just this fall told I only need to visit every 12 months. Alisa - I know that you and your husband will get through this.

richjohnwilson
Posts: 1
Joined: May 2013

I am a survivor if you need my regimen for this please reply. I will be putting up my history soon. I was diagnosed in 1984 and am alive and well today. 

drhopps4
Posts: 2
Joined: Apr 2013

Is there anyway you can contact me about this disease? My husband has been sick for 2 years now and we just got a diagnosis of LYG. It has affected his lungs, brain and spine. I just keep praying everyday for a miracle. They are also going to contact Dr.wilson at NIH. He is getting a petscan done on tueday and they are talking about starting him on interferon. Can you please get back to me on the most up to date information on this disease?

drhopps4
Posts: 2
Joined: Apr 2013

My husband was just diagnosed with Lymphomatoid Granulomatosis. He has been sick for 2 years now. He has it in his brain, lungs and spine. Can anybody give me more information about this disease and how to treat it. They are talking about interferon. Any information you can provide would be wonderfrul.

 

JMF1967
Posts: 1
Joined: Oct 2013

Hello, I'm new here and can't believe I came across this post. I was misdiagnosed many times while in the hospital in August 2012 after my health started to go downhill. Eventually the LYG diagnosis came after my local hospital sent my lung biospy results to a center in MA or CT. As some have commented before, the statistics online are pretty grim. I was warned by my DR who performed the biopsy and delivered the results to read what you find online with caution.

A little more about me...I was 45 when I learned I had this rare condition late last summer. I'm now 46. When it hit me my weight plummited 30 lbs and I was frequently tired, had a lot of itching, and couldn't sleep. After my first CT scan at the hospital I went on a strict diet of being vegan with juicing, etc. The next scan showed vast improvement of the legions in my lungs in Feb. 2013. Then I "fell off the wagon" and ate meat, dairy, drank beer and my results in October 2013 were "much worse". Since then I've become a vegan again. Even though I've heard of how good a job NIH is doing with some promising therapies it seems they need their own biospy before even staging me. I was wonding what the experts would say about my case.

Question: My situation is nodules/cysts in the lungs and affected nervous system in my legs (can't run anymore, just walk somewhat limping). Does anyone know if NIH has the expertise to actually target other areas of the body such as the legs? (along with the lungs) In some of my reading it appears some people get it in different parts of the body. It's just so rare it's a challenge getting updated information on this.

A great thank you to anyone out there who can provide some feedback and/or guidance for me.

Thanks,

Jon

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network