Lymphomatoid Granulomatosis

245

Comments

  • sembe
    sembe Member Posts: 14
    #22
    Fredda said:

    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

    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
    pniro Member Posts: 43
    #23
    sembe said:

    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

    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
    sembe Member Posts: 14
    #24
    pniro said:

    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

    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
    pniro Member Posts: 43
    #25
    sembe said:

    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

    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
    sembe Member Posts: 14
    #26
    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
    sembe Member Posts: 14
    #27
    Sorry Patty, I meant 12 Oct, and hope all shows up ok then for Robert.
    Best wishes - Shirley
  • pniro
    pniro Member Posts: 43
    #28
    sembe said:

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

    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
  • sembe
    sembe Member Posts: 14
    #29
    sembe said:

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

    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
  • Fredda
    Fredda Member Posts: 13
    #30
    pniro said:

    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

    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
    pniro Member Posts: 43
    #31
    Fredda said:

    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

    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
  • pniro
    pniro Member Posts: 43
    #32
    sembe said:

    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

    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
    sembe Member Posts: 14
    #33
    sembe said:

    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

    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
    pniro Member Posts: 43
    #34
    sembe said:

    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

    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
    sembe Member Posts: 14
    #35
    sembe said:

    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

    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
    pniro Member Posts: 43
    #36
    sembe said:

    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

    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
    sembe Member Posts: 14
    #37
    sembe said:

    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

    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
    pniro Member Posts: 43
    #38
    sembe said:

    Hi Patty,

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

    I wonder how Fredda is getting on?

    Best wishes

    Shirley

    Hi 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
    Fredda Member Posts: 13
    #39
    pniro said:

    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

    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
    pniro Member Posts: 43
    #40
    Fredda said:

    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

    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
    Fredda Member Posts: 13
    #41
    pniro said:

    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

    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

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