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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

I was finally diagnosed with stage 1 LG in February and have been on rituxan for several weeks and am now on combination of rituxan and chemo. There are no other cases like mine that I am aware of in my area and even my doctors have had little experience with this since it is rare and hard to diagnose. Any info would be helpful. What are sympthoms? I have cough, no energy, woozy, and lose voice often.

pniro
Posts: 43
Joined: Jul 2007

Hi Fredda,

Where are you located? It is a very rare disease and even the top hospitals in New York City directed us to Bethesda Maryland to part of a clinical study it is about a 4 hour trip for us. My husband is patient #51. I would love to hear more of your story. Did you have a biopsy? We were told down at the NIH that chemo was how they originally treated (and the local oncologist we had originally gone to was going to treat us that way) LYG but they found the route of the problem was the immune system. So that is why we are on interferon only. From my understanding only grade III LYG receives chemo but since it is so rare and each case is different you never know. My husband had a consistent cough, very tired and lost a lot of weight. After a CT and PET scan they had found he had a bunch of nodules on his lungs. He was in remission but had a relapse when we went back to the NIH last week..so his dosage of interferon was just increased. He was 38 years old when he first got sick and just turned 40 this weekend. Would love to hear more of your story.
Sincerely,
Patty

Fredda
Posts: 13
Joined: Jul 2007

Dear Patty,
Thanks for your reply. We live in Venice, Florida, coming from Brooklyn and Liberty, NY. I am a 72 year-old lady who had a cough for about one year. Went to my internist, had all kinds of cough medications, prednisone, even went to an allergist thinking I had allergy or asthma. The first chest x-ray came out negative, the next one positive and showed nodules and lesions. I had two needle biopsies which were negative. I did have uterine cancer when I was in my 50's. My son, Peter, is a cancer researcher at the U of Penn and got me into Moffitt Cancer Center in Tampa. I was diagnosed with lymphocytic interstitial pneumonitis. The lung specialist there had me as his first patient. I asked Peter to find me a Doctor who perhaps has seen someone with LIP that I could talk to and find out the prognosis. We were going to Arizona for Thanksgiving last year and Peter made an appointment for me to see a specialist at the National Jewish Research Center in Denver, Colorado. All my test were sent there to be reviewed. The Doctor told me that he did not think the diagnosis was correct. It was on the right side of the spectrum, lymphoma was on the left and he felt I was going towards the left and the only way to have a definitive answer was to go in the have a large piece taken out of the lung which I had done in February in Tampa. Peter also had all the info sent to the NIH in Bethesda as he knew about the trial run, but for us it would be too much for traveling. The NIH concurred with the diagnosis of LYG which is hard to pronounce and spell. I have had pet scans, catscans, etc. and have one in two weeks to see if the infusions are working. The local oncologist that I see locally keeps on telling me that LYG is rare and very hard to diagnose. I do not think there is a definite medication. Interferon was mentioned, but Moffitt decided to start with rituxin-and then chemo. I hope it is working. I am not a computer person and my son who was visiting last week-end set me up with this Cancer Network. I'm glad that he did. Do keep in touch.
Sincerely,
Fredda

pniro
Posts: 43
Joined: Jul 2007

Well Fredda..your story sounds so much like ours. I am glad that the NIH confirmed everything for you...we have put our faith in them because quite frankly that is all we have. I have been told the same thing...it is so rare and from our experience we know it is so difficult to diagnose. I have been looking for someone who has this and so glad I did...I will keep thinking about you, and keep me posted as to how you are responding when you go back in 2 weeks. We go back on August 30th and I hope that things are looking up...he will be on the interferon at least another year, and he has already been on it 7 months. He is a trooper though...we have 3 kids and he commutes into NYC everyday by train. I agree when you tell people what you have most do not understand nor can they pronounce it. I feel like I am constantly explaining myself. I hope your son Peter gets to study this disease...maybe he can tell us why some people get this. Take care and talk to you soon.

Patty

Fredda
Posts: 13
Joined: Jul 2007

Dear Patty,
I have been thinking about you and wonder if you saw an article in the newspaper "Patient access to lymphoma drug is limited" that appeared in our local newspaper on July, 14th. It was on the front page of the New York Times that same day. A cousin of mine from NYC called my son to tell him about the story. It was interesting and pointed out that a patient has to be an advocate and ask plenty of questions which I'm sure you have done and I know I certainly still do. Let me know about the newspaper article and I will send it to you if you have not read it. When you have a minute, please tell me your husband's symptoms. Does he cough up clear stuff? Does he lose his voice? Does he feel woozy (not dizzy, but unfocused)? You wrote that he works. I retired 4 yeears ago as a retailer and I could no more go into work now because of being tired and woozy. I keep asking the doctor maybe this is because I am older and he says no that it is because of LYG. Any information you can give me would be helpful. I hope your husband responds to his treatment. We are thinking of him. He is Peter's age. Do keep in touch.
Fredda

pniro
Posts: 43
Joined: Jul 2007

Glad to hear from you again. I just read that article online and it was really interesting...put it in as a favorite so I can refer back to if I ever need to. When my husband was at the height of his illness which was about Jan/Feb 06 he was still working but when I think back to how sick he was and I did not realize it, but he continued to work and I do not know how he did it. The doctors were shocked too. He had a persistant cough pretty much all day long, back pains that would take his breath away (sometimes I felt like I needed to call 911), weakened voice, he was definitely a bit "out of it" and the biggest thing was he had lost about 25 pounds in one month. We were expecting our 3rd child at this time that I never really noticed any of it which so upsets me....I think I got myself wrapped up in the pregnancy and my other 2 kids. It was not until I was in the hospital after having our son that I told him to go to the doctor...my other 2 were in school and I was in the hospital it was the perfect time. That is where our life went crazy..we went from shear happiness to devastating news. We were told he had Stage IV Metastatic Colon Cancer, that proved wrong after a colonoscopy. Then we went to active TB, cancer that we can not locate,etc. After 2 open lung biopsies (my son was only 4 weeks old by then!)..he was diagnosed with Wegener's Granulomatosis...he was treated for 7 months with chemo, and after that something still was wrong and the biopsies were sent to Sloan Kettering and the NIH which confirmed his real disease. Eventually he would not have been able to work if we did not act quickly, and my job was to be his advocate. I would not stop until I got answers that made sense...when we were told he had colon cancer I would not accept it. He was 38 with no family history, no cancer markers etc...but they told us they were 98% positive...we left that oncologist real quick. I am hoping and praying everyday that this treatment will work...the interferon is so tough on him, and the whole family but we know that this is our only option. I hope you are responding as well, and I think of you often. I am off to the Philly area today to visit old college roommates, and my parents are both from Brooklyn (they are 71)...what a small world!
Take Care...talk to you soon. Patty

sembe
Posts: 14
Joined: Aug 2007

Hello, I'm from England, and my 34 yr old son also has LG. It was such a shock when he was diagnosed with it last month. He'd had pneumonia last January, where his lungs were seen to be covered in "white spots". He didn't take too long to get over the pneumonia, but the doctors kept him off work for 10 weeks. During this time he went to hospital to give blood and have x-rays on his lungs, which still showed these white spots. So then he went to another hospital in March for a lung biopsy and a camera down his throat. Then, come June, the consultant in the hospital sent him to one in London for further blood tests and x-rays, who sent him to another London hospital a week or so later!!! So he's been to 4 different hospitals! This last one treats cancer only, and they're treating my son as if he had low-grade lymphoma and he's been on alpha interferon for the last month, We've been told there are only about 5 in 100,000 people who have LG, so it's that rare and I wish I knew how he got it in the first place. He worked out in the cold just before he caught pneumonia, so we think his immune system went up the creek when he got cold, and we're not sure whether it really was pneumonia or the start of the LG. It really is wonderful to hear him laughing, like when he's watching something on the TV. Will write more soon.

Regards - sembe

pniro
Posts: 43
Joined: Jul 2007

Hi Sembe
I wish I knew how my husband got LYG too...it is a real mystery. How did they finally diagnosis your son? Was it through a lung biopsy? How is he handling the interferon? My husband is really tired most of the time but is still managing to work. He was on 10 million units for 7 months, but we had a setback a couple of weeks ago so he is now on 15 million units and should be on that for at least a year. How long did they tell your son he would be on it?
Regards,
Patty

sembe
Posts: 14
Joined: Aug 2007

Hi Patty and Fredda

The consultants said they'd diagnosed LYG by using a whole picture scenario, which I think meant looking into all of the x-rays, the ultrasounds, the blood specimens, the camera picture and lung biopsy, but I think it was the latter which finalised their diagnosis, but didn't confirm it til Tony got to the cancer hospital. Tony had a cold for 3 weeks, over Christmas, where he was coughing and sneezing, then came the pneumonia, otherwise he'd had no symptoms at all, but the cold and cough might have carried on, which after a couple of months, would have sent him then down to the doctors, and the x-rays etc might have started up from then. Tony's on 10 million units too, like your husband Patty; one person said for possibly up to 20 months, another said up to 12 months, so they're not sure yet. He's going up to London again next Tuesday, to get some more interferon - the flu symptoms side effect when he first started interferon seem to have gone now, but he's been told he'll get more tired than he's feeling at the moment. Otherwise he seems fine, and is working like your husband.
I hope the rituxin and chemo are working Fredda, and yes, the tiredness that the doctor confirmed to you was because of LYG does seems to be right. Patty - can your husband remember a time when he got very cold, like Tony did, Fredda, did you ever get very cold at any time? How LYG starts is just guesswork really, because even the doctors don't know what causes LYG.

Regards - sembe

pniro
Posts: 43
Joined: Jul 2007

Hi Sembe,

I do not remember my husband sick atany time...it all started in January/February so it was cold around here then, but he never seemed sick. The only thing he was doing besides work was redoing the nursery in my house so he was taking down sheetrock and putting up new ones. He lost about 20 pounds in one month without trying, was coughing, and was having difficulty breathing...he was always very healthy. Robert was on 10 million units for 7 months, and now they are saying at least another 12 months on the 15 million units. Did they tell you what grade your son has I, II, or III? My husband is grade II. I am so glad that I found someone else dealing with this disease...it is comforting to know there are others out there going through this too.
Regards,
Patty

sembe
Posts: 14
Joined: Aug 2007

Hi Patty - Tony's in the middle of Grade I and II and is going back to the hospital to give blood again on 21 August, and collect some more interferon which evidently can only be used within 4 weeks and has to be kept in the fridge doesn't it?
I'm hoping the doctors will tell Tony how he's doing, and I might phone them up myself to find out.
Is Robert going for a check-up etc on 30 August? How long was he in remission and how did you know he'd had a relapse? Did Robert go straight onto the interferon after having had chemo and when he was in remission, was he still taking the interferon? It's nice to be able to talk to somebody who understands and I wonder how many others currently have LYG.

Regards - sembe

pniro
Posts: 43
Joined: Jul 2007

Hi Sembe,

Yes interferon does have to be kept in the fridge. Robert goes on the 30th for a check-up..everytime he goes he gets a complete cat scan and bloodwork. He was in remission for 7 months and was still taking the interferon. We were told that once you are in remission you should be on the interferon for 12 months after that. The only reason he was on chemo in the first place was he was misdiagnosed with something else...so the chemo was for that, not for the LYG. When we went for the check up in July they found a new spot on his lung...that is how we found out he relapsed. They take blood just to see how his white blood cell count is. There were no other signs...he did not feel sick at all. It was a real blow to us because he was supposed to be done the interferon this November...but now since he relapsed we are looking at atleast another year.
Robert is in a clinical trial at the National Institute of Health here in the states..he is currently patient #51....they told us we would have a better chance of winning the lottery than getting LYG.
Thanks so much for talking with me...how is Tony handling the interferon now? I hope OK.

Regards,
Patty

sembe
Posts: 14
Joined: Aug 2007

Hi Patty

Tony's injected the interferon 15 times now, the last 4 times being at 10 MU. He's still dubious when taking it, and holds the needle while he builds himself up to put it in because of the pain. He seems ok, other than tired.

I've told Tony that if I had a pound (sterling) for every tear I'd cried since his diagnosis I'd be a millionaire - it seems so unfair and I bet you feel the same about Robert, especially about the relapse as well. At the moment the doctors are only asking Tony for blood samples, and will be giving him a scan at 3 months, but I wish they'd do this every month. I hope the scan will be every month when he gets to the remission stage as a relapse could go undiagnosed for quite a few weeks otherwise. Was Robert's relapse spotted early?

I'm on holiday until the end of August and will write as soon as I'm back.

Regards - Shirley

pniro
Posts: 43
Joined: Jul 2007

Hi Sembe,

Tony will become an old pro at it real soon...as bad as that sounds. I have cried almost everyday for a year now, it seems so unfair. I try to hold myself together for my kids but they know that someday Daddy will be fine.
Robert was getting cat scans every 6 weeks at first, and when they switched it to 3 months is when they saw the spot. They did catch it very early since they said the spot was extremely small. He will know have cat scans every 4-6 weeks, and gets blood every week, where when he was in remission we were down to every 3 weeks.

I hope you enjoy your holiday and look forward to talking to you when we get back. Hopefully you and I will both have good news.
Take care,
Patty

Fredda
Posts: 13
Joined: Jul 2007

Dear Patty and Sembe,
I have been thinking of you both and have just read through all the blogs again. I just had another catscan and met with my oncologist. The scan was much improved compared to the last one and showed that some of the nodules or lesions have disappeared while others have reduced in size. I am going through another regiment of rituxin and chemo until the end of September and then we will go from there. LYG is not a disease that is caught in the sense of a cold, but has to do with an irregularity of the B-cells that are part of the immune system in the blood stream. In the case of Robert, Tony and myself, the problem with the B-cells manifested itself in the lungs causing the problems that we have. And Patty, I too had to have a colonoscopy to assure the Doctors that the irregular cells in my lungs were not caused by a metastisized colon cancer. I do hope that both Robert and Tony will have good results. You are both in my thoughts. Will keep in touch.
Fredda

pniro
Posts: 43
Joined: Jul 2007

Hi Fredda,

So glad to hear from you again, and so glad to hear that your scans are improving. I hope it all continues. Robert goes back to the NIH this Thursday and I am really hoping for good news...don't know how I will handle hearing anything else. I will keep you posted and keep praying.

Patty

pniro
Posts: 43
Joined: Jul 2007

Hi Fredda and Shirley,
Well went back today and got good news. The new spot that came back in July is now gone. SO the hope is the 15 million units is what his immune system needs to keep the EBV under control. We will go back in 6 weeks and hope all is well, he is still getting blood work every week at home and shipped down there to be analyzed. We are keeping the goal of August 08 as when we should be done. We had to up some of the anti-depressants and anti-anxiety meds because the longer you are on the interferon the harder it gets to focus, stay on target, and remain calm. I think it is more for me:)
Take Care,
Patty

sembe
Posts: 14
Joined: Aug 2007

Hi Patty and Fredda

It's great that there's been good news for you both. Tony's EBV was negative (which makes it more surprising, I think, that he got LYG) so the doctors were not sure how interferon would work on him. Tony had an x-ray last week, and will know the result on 11 Sep - then it's a CT scan on 25 Sep. His white blood cell count was down 2 weeks ago, so he had a break from interferon for a week, and has now been put on 7.5 MU, so I hope it's still strong enough to righten those B-cells and keep his lungs clear.

Thinking of you all often - Shirley

pniro
Posts: 43
Joined: Jul 2007

Hi Shirley,

That does make it more of a mystery that Tony did not test positive for EBV. RObert WBC has been low too but they have never changed the interferon. If it gets dangerously low they will give him another med (an injection) to help with that. I will keep you guys in my thougths and prayers and hope you get a good report on the 11th.

Talk to you soon,
Patty

Fredda
Posts: 13
Joined: Jul 2007

Dear Patty and Shirley,

Glad to hear the good news about Robert and hope that all will continue to go well. Hope that Tony will get good reports on his ex-ray and catscan also. I am surprised that the only two patients that I know who have LYG are half my age. I assumed it targeted the elderly, but I was wrong. You are both in my thoughts. Will keep in touch.

Fredda

sembe
Posts: 14
Joined: Aug 2007

Hi Patty and Fredda - hope all is going well with you Fredda and that Robert is OK too. I'm phoning the hospital about Tony's x-ray tomorrow, as nothing was said about it when he went there today. He's been taken off the interferon again as he's come down with a cold - that's the 2nd week off it in less than a month, and now that he's down to 7.5 MU as well, it all seems a bit worrying.

Best wishes - Shirley

pniro
Posts: 43
Joined: Jul 2007

Hi Shirley,

I believe there should be something they could give Tony to help with his WBC. I know the doctors told us if Robert's dropped dangerously low they would give him another injection that he can take that would help with that. You may want to check into that. I hope you get a good report on the x-ray. I can not believe the doctors did not mention anything about the x-ray while he was there today. He has his next CT scan on the 25th right? I will say a prayer that all goes well.
Thinking of you,
Patty

sembe
Posts: 14
Joined: Aug 2007

Hi Patty
Thanks for the advice about the WBC injection, and will definitely look into that. Was told over the phone that there was a slightly better appearance to Tony's lungs on x-ray than the one in May, so that's good news and I would have thought the doctors would have been pleased to tell him that.
Are your notes disappearing into the corner because mine are - I'll contact ACS to see if these can spread out across the window.

Best wishes - Shirley

pniro
Posts: 43
Joined: Jul 2007

Hi Shirley...Yes they are slowly going down into the corner...thought it was just me. Glad to hear about Tony's x-rays..that is great news. Hopefully he will keep responding to either the 7.5 or 10mu...and I am sure he will. We do not go back until the 12th of October..feels like an eternity to wait!
Hope all is well...

Patty

sembe
Posts: 14
Joined: Aug 2007

Hello Patty and Fredda

Hope all is going well with you and the days lately seem to be going quite fast, so 13 October will soon be here Patty.
We were given the results of Tony's CT scan yesterday and all is well thank goodness, the white on the lungs is lessening and the other tissues are clear. The oncologist says that he is giving another person interferon, so someone else in England also has LYG, but data protection meant he couldn't give any details - shame.
All the best and thinking of you
Shirley

sembe
Posts: 14
Joined: Aug 2007

Sorry Patty, I meant 12 Oct, and hope all shows up ok then for Robert.
Best wishes - Shirley

pniro
Posts: 43
Joined: Jul 2007

Hi Shirley,

Our visit last week went well. They said he is in clinical remission as of August 30...so one year to that date he will be done with the interferon. As long as everything coninues as it is. The only concern right now is how he is handling the interferon mentally. It is such a tough drug but they are working on his anti-depressants to see which ones will make him function the best. How has Tony been handling the interferon?

Patty

Fredda
Posts: 13
Joined: Jul 2007

Dear Patty and Shirley,

I am glad to hear that Robert is in clinical remission and hope that all goes well with him for the next year. And glad that Tony is showing improvement. I had my last chemo and rituxin infusion in October and am now on hold until beginning of January when I will have another catscan and go from there. In the meantime, we made our way to Sedona, Arizona, where we have been coming for Thanksgiving . Our kids and family will join us so we are looking forward to it. You both have been on my mind and I hope for the best for you and family.

Fredda

pniro
Posts: 43
Joined: Jul 2007

Hi Fredda,

Glad you are done your treatments for now, and glad you enjoyed Sedona. I have been there and think it is beautiful. We were down at the NIH last week to really check Robert's mental state on the interferon, it is such a tough drug with such horrible side effects but they have been wonderful there. We go back next month for catscans, etc....still hoping all will be well. August 30th is a long way off but we have gotten through this far. Keep in touch and I hope you enjoy your holiday season.

Sincerely,
Patty

sembe
Posts: 14
Joined: Aug 2007

Hi Patty, So 30 Aug 08 will be a magic day ... Tony's is still in the unknown timescale ... but a few weeks ago he was told by letter that his lungs showed a "dramatic" improvement in appearance, so that's promising.
He's seeing a haematologist in a hospital close by now, but is still with the London hospital too. Now he injects using a 'pen' which is worked via a battery, which took a couple of evenings or so before he got the hang of how to do it, despite the instructions!
I don't see my son every day, but when I do he seems to be coping with the interferon, at the moment anyway, without antidepressants, and I hope it helps him when we talk about it.

Best wishes - Shirley

pniro
Posts: 43
Joined: Jul 2007

Hi Sembe,

Well November 15th was the first magic day, but that did not pan out the way we planned. But I am really hoping for the August date to come through. Robert is on a couple of anti-depressants, plus he is also on meds to help him sleep. I guess since he is on a higher dose than Tony the side effects are a bit more severe. I am glad to hear that Tony's lungs showed improvement...those are the words that are really magical. My 10 year old daughter has actually helped Robert with his injections sometimes, but my 12 year old doesn't want to see any of it. It has gone on for so long that I think it has just become a way of life...sadly.

I hope you have a wonderful holiday!

Talk to you soon,
Patty

sembe
Posts: 14
Joined: Aug 2007

Hi Patty, Happy New Year and hope you had a lovely Xmas.

It's great that your 10yr joins in for Robert, and your 12yr old may later on.

The London hospital that Tony goes to, The Royal Marsden, caught fire on 2nd Jan, and the roof has been destroyed from part of the building, which started on the fourth floor. This hospital deals with 40,000 cancer patients a year, and is now out of use for a while. The patients who were there have gone to neighbouring hospitals. Tony is to have a CT scan on 10 Jan at the hospital near home, about 5 miles away, and was to get the result from the London hospital on 18 Jan. Now we're not sure if he will be able to be seen at London, and will wait a few more days before phoning their helpline. The fire's such a setback for so many people ...

All the best
Shirley

pniro
Posts: 43
Joined: Jul 2007

Hi Shirley,

So sorry to ehar about Tony's hospital. I hope it does not cause any setbacks. I hope he was able to get his scan on the 10th. Robert and I travel down to the NIH this week. I have to say I am a bit nervous...I feel that his cough is slowly coming back..he tells me I am just having a panic attack but it is all so similar to last time.

I will talk to you the end of this week and tell you how things went. I wish Tony well.

Sincerely,
Patty

sembe
Posts: 14
Joined: Aug 2007

Hi Patty
How did things go with Robert at the NIH? He's trying to ease the situation about the cough isn't he?

Tony did not get any news from the London hospital on 18 Jan as they did not receive the scan from the Salisbury hospital (perhaps it got mislaid in the confusion of the fire) - but they said they would send Tony a letter which wasn't sent either! I phoned the Royal Marsden oncologists last week and hopefully a letter has arrived this week!!

If all's clear on the scan he may get a date of his last injection so it's an important letter. He had a PET and a CT scan, but came up in a rash 'cos of the radioactivity, so won't have another PET scan - he's allergic to penicillin as well, and wears an SOS bracelet. It's not fair is it?

Hope to hear from you soon
Best wishes
Shirley

pniro
Posts: 43
Joined: Jul 2007

Hi Shirley,

Things actually went well, and his CAT scan showed he is still in clinical remission. So we have 7 more months of interferon to go. He is still taking it three times a week and he is on 15 million units. We do not go back until April where they will do another CAT scan to make sure he is still clean. This has been such a long hurdle, and I know there is a light at the end of the tunnel but 7 more months of this drug takes a toll on everybody.
How many times a week does he get the injection? They think he will be off the interferon soon? That is a lot sooner than Robert was ever offered.
Keep me posted when he receives his letter.

Sincerely,
Patty

sembe
Posts: 14
Joined: Aug 2007

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

pniro
Posts: 43
Joined: Jul 2007

Hi Shirley,

I wish Tony was LYg free...I wonder why they are not upping his dosage of interferon. Didn't he havea reaction to the higher dose? Robert started at 7.5 units and has been stable at the 15units 3 times a week. I agree TOny should continue to see doctors and get the LYg under control. If they are anything like the NIH...once they find no evidence of LYG then it is an additional year. We have 6 more months to go. I will keep my fingers crossed for Tony's visit tomorrow. I also was wondering about Fredda too....never heard from her.

Talk to you soon,
Patty

Fredda
Posts: 13
Joined: Jul 2007

Dear Patty and Shirley,
It has been a long time, but the two of you and Robert and Tony have been on my mind. I had my last chemo and rituxin in Arizona in the fall, and came back to Florida in December. Had a catscan which was good and am on what they call "maintenance"-rituxin infusions, but no chemo. I have blood tests weekly and found that my hemoglobin was very low-had a blood transfusion and a bone marrow biopsy which should that my bone marrow was producing red blood cells, but not quickly enough. I have hemolytic anemia, due to my immune system. Have been on high dosages of steroids and have been very dizzy, etc. I am now being weaned off of the steroids and going for rituxin again this week and hope for the best. I do hope that Robert is still in remission and that Tony is improving.

Thinking of you both,
Fredda

pniro
Posts: 43
Joined: Jul 2007

So glad to hear from you Fredda, and glad that things are going in a positive way for you. I hear rituxan is an incredible drug...how does the maintenance work? I am hoping you are enjoying sunny Florida...I am ready for some of that nice weather to come up North. Be well and take care.

Talk to you soon,
Patty

Fredda
Posts: 13
Joined: Jul 2007

Dear Patty,
Good to hear from you. I am now on rituxan once a week for one month because my red blood cells are not being produced fast enough (hemolytic anemia). I then go for a catscan and then on to "maintainance" which is getting rituxin every few months, hoping to maintain my lungs in the same condition as they are now. Rituxan is easy to tolerate unlike the chemo. The weather here is sunny and beautiful and the tourists are here. I will try and send some of the warm weather up your way. Please keep in touch and let me know how Robert is doing.

Fredda

sembe
Posts: 14
Joined: Aug 2007

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
Posts: 43
Joined: Jul 2007

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
Posts: 13
Joined: Jul 2007

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
Posts: 43
Joined: Jul 2007

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
Posts: 13
Joined: Jul 2007

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
Posts: 43
Joined: Jul 2007

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
Posts: 1
Joined: Feb 2009

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
Posts: 13
Joined: Jul 2007

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
Posts: 43
Joined: Jul 2007

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

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

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