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Thread: Stage 4 Primary Mediastinal DLBCL - any different?

  1. #11
    Senior User rizza's Avatar
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    Hi and welcome. Sorry you have a reason to be here.

    I had PMBCL and am now 18 months in remission. I had R-CHOP21 followed by 4 weeks of radiation. I had a mango sized mass pressing on my lungs too, and immediately after my first treatment my couch and pain eased considerably.

    As Kermica said my thread is here: http://www.cancerforums.net/threads/11576-My-Story-NHL, I also wrote a blog which you can find in my signature.

    It'd be good if you can convince your wife to post on here herself. I too never thought I'd be one to use an online forum, however I guarantee she will benefit from the support it provides. Obviously no-one here are oncologists, so medical advice is better sought face to face, however you really can't beat the support you get on here. It's so beneficial to talk to people that are going through the same things as you.

    All the best for the treatments!
    30yo female (27 at diagnosis)
    Mediastinal Large B-cell Lymphoma
    Started six cycles of R CHOP 21 on 8th Jan 2010, completed 23rd April 2010
    4 weeks of daily radiation, started on 18th May 2010
    First clear PET scan 5th August 2010!
    2 years cancer free June 2012!
    My blog: http://dlbcljourney.blogspot.com/

  2. #12
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    The Second Opinion...

    OK so we are two rounds into six of R-CHOP14 and manage to get an appt for a second opinion with another Haematologist who comes highly recommended.

    Long and the short of it he said he would have prescribed a very different treatment - DA-EPOCH-R which is basically R-CHOP with Etoposide and dose adjustment every three weeks. The Etoposide is heavy hitting requiring 4 days in hospital for every administration and blood products / platelets / transfusions. Neutropenic Fevers etc are pretty much guaranteed. His reasons for using this are:

    - PMBCL, in the pre-Rituximab era, showed good sensitivity to Etoposide. It would make sense that this would be the same with Rituximab although no-one can prove this point either way.
    - My wife is young (34), fit and can handle the harder chemo.
    - The Stage 4 of the disease, with bone involvement at multiple sites places her at higher risk of brain and CNS relapse. Our first consultant mentioned nothing about this. We didn't get a lumbar puncture prior to the commencement of chemo to determine the spread of the lymphoma in the spinal column, which we're not happy about as this specialist would have prescribed it to get a better view of that risk. Worthless now that R-CHOP has started.
    - Etoposide is more active across the blood/brain barrier and would be more protective against this risk.
    - While Etoposide has a small (circa 1-2%) risk of developing leukaemia this is small compared to the radiotherapy that we will likely need at the end of R-CHOP even if the PET scan is clear.
    - DA-EPOCH-R doesn't require radiotherapy at all, which is quite important due to my wife's youth and the long term risks associated with irradiating the mediastinum. Our first consultant mentioned nothing about this.
    - A study of 37 patients with PMBCL at varying stages and treatment with DA-EPOCH-R showed 100% survival at five years. A lower number occurred for those without rituximab. We like that number (although we realise it's a small sample size).

    The long and the short of it is that one consultant reckons we should treat this like any other DLBCL while the other reckons it's a specific subtype that responds differently to "garden variety" DLBCL and should be hit accordingly. It's pretty hard to distinguish between two experts in their field when they completely disagree on the path to take and the risks involved! We are leaning towards the second opinion because we don't like the risks of radiotherapy and would prefer to take the short term pain of a tougher chemo regimen, even though it's likely to make her very sick. The main point though would be that the second consultant seems to know a lot more about this particular subtype while the first one just says "there is no evidence that it responds any differently to R-CHOP compared to DLBCL, where it is clear R-CHOP is the gold standard". However the evidence is there before rituximab for this subtype and DA-EPOCH-R has some a fairly impressive record when it has been used since.

    So the current plan is to wait until our mid regime PET scan on the 10th Jan (after 3 of 6 R-CHOP cycles) - if there is any cancer at all on that scan we will likely switch over to DA-EPOCH-R and a new consultant. But there is a lot of research to do in the meantime and questions to be answered before we draw that conclusion. And some pertinent questions for that first consultant...

    The bottom line? ALWAYS get a second opinion!!!
    My Wife - Primary Mediastinal Diffuse Large B Cell Lymphoma
    Age 34 with 3 young children
    Stage 4 - 11x6cm primary mass with four other sites including bone / abdomen
    Elevated LDH
    Just started 6xR-CHOP14, likely to be followed by radiotherapy

  3. #13
    Senior User Buffboy's Avatar
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    Quote Originally Posted by TheHusband View Post
    The Stage 4 of the disease, with bone involvement at multiple sites places her at higher risk of brain and CNS relapse. Our first consultant mentioned nothing about this. We didn't get a lumbar puncture prior to the commencement of chemo to determine the spread of the lymphoma in the spinal column, which we're not happy about as this specialist would have prescribed it to get a better view of that risk. Worthless now that R-CHOP has started.
    Why would it be too late to do a lumbar puncture at this point? Is this something he said or is it your own reasoning? CHOP is not really effective in crossing the blood-brain barrier, which means that any CNS involvement present at the time of diagnosis is very likely to still be present. I had three lumbar punctures while undergoing treatment (all negative) where they were injecting chemo directly into the spine just to make sure that no cancer cells were roaming around in there. Please follow this up.

    Quote Originally Posted by TheHusband View Post
    The bottom line? ALWAYS get a second opinion!!!
    Amen! That is also my mantra.
    Age: 34 (29 at diagnosis)
    Diagnosis: Burkitt's lymphoma, sporadic type (originally misdiagnosed as FL, then DLBCL)
    Stage: 2B, bulky disease
    Treatment: Began 8 cycles of R-CHOP 14 on 21 May 2010 + protocol. Discontinued treatment after 6 cycles due to misdiagnosis and switched to 3 cycles of R-CODOX-M/R-IVAC on 20 August 2010. Ended treatment with BEAM+Autologous SCT on 1 October 2010.
    In remission ever since.
    My story: http://www.cancerforums.net/threads/...s-old-My-story

  4. #14
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    Quote Originally Posted by Buffboy View Post
    Why would it be too late to do a lumbar puncture at this point? Is this something he said or is it your own reasoning? CHOP is not really effective in crossing the blood-brain barrier, which means that any CNS involvement present at the time of diagnosis is very likely to still be present. I had three lumbar punctures while undergoing treatment (all negative) where they were injecting chemo directly into the spine just to make sure that no cancer cells were roaming around in there. Please follow this up.
    Thanks Buffboy

    That is something he said. But the reasons aren't entirely clear to me. I thought it was because the R-CHOP is likely to have killed it now so a negative test wouldn't be really predictive of risk if it was present initially. However you make a very good point (one of the same ones he made in recommending against R-CHOP) given the fact my wife's lymphoma fractured one of her vertebrae (the exact mechanics of how this happened has never been adequately explained either despite repeated questions) I would have thought it would still be a potential issue worthy of investigation. A bone marrow biopsy in the hip came up negative and that may have something to do with it.

    Also, despite my wife complaining about pain in both sides of her hips and in her back and the PET scan showing tumours in all those locations, the consultants say that is likely to be "referred pain" from the main tumour. No adequate explanation on that front either. The problem is you get around 30 mins with these guys and no doubt the real answers require at least a few 3 hr lectures to adequately explain.

    I've taken to writing down all the questions so we don't miss them and repeating them when they haven't been adequately explained.

    Will definitely follow up... so thanks very much for that!
    My Wife - Primary Mediastinal Diffuse Large B Cell Lymphoma
    Age 34 with 3 young children
    Stage 4 - 11x6cm primary mass with four other sites including bone / abdomen
    Elevated LDH
    Just started 6xR-CHOP14, likely to be followed by radiotherapy

  5. #15
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    Quote Originally Posted by Buffboy View Post
    Why would it be too late to do a lumbar puncture at this point?
    My DLBCL diagnosis was preceded by a couple years of cranial neuropathies, for which I took prednisone. I was told that prednisone screwed up the results of a lumbar puncture, and that I had to go off prednisone for at least six weeks to get a good one. Dunno if that's the truth; it's just what I was advised by neurologists.
    Diagnosed at 57 years old on December 7 '09 with DLBCL, stage III
    Completed 8 cycles of R CHOP 21 May 24 '10
    Completed 18 sessions of radiation July 21 '10
    NED from May of '10
    Recurrence of lymphoma February '15

  6. #16
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    Quote Originally Posted by TheHusband View Post
    The long and the short of it is that one consultant reckons we should treat this like any other DLBCL while the other reckons it's a specific subtype that responds differently to "garden variety" DLBCL and should be hit accordingly. It's pretty hard to distinguish between two experts in their field when they completely disagree on the path to take and the risks involved! We are leaning towards the second opinion because we don't like the risks of radiotherapy and would prefer to take the short term pain of a tougher chemo regimen, even though it's likely to make her very sick. The main point though would be that the second consultant seems to know a lot more about this particular subtype while the first one just says "there is no evidence that it responds any differently to R-CHOP compared to DLBCL, where it is clear R-CHOP is the gold standard". However the evidence is there before rituximab for this subtype and DA-EPOCH-R has some a fairly impressive record when it has been used since.
    I'm really terribly sorry your wife is going through this. I suggest the positive spin is that you're not grabbing at straws, instead your wife faces a choice between two good, effective regimes. Does the first doc make a case against adding Etoposide, other than it's rough stuff?

    Best wishes on this sad holiday season.
    Diagnosed at 57 years old on December 7 '09 with DLBCL, stage III
    Completed 8 cycles of R CHOP 21 May 24 '10
    Completed 18 sessions of radiation July 21 '10
    NED from May of '10
    Recurrence of lymphoma February '15

  7. #17
    Senior User Buffboy's Avatar
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    I think Vincera posted a good post some time ago on lumbar punctures and CNS-involvement. Check it out here: http://www.cancerforums.net/threads/...hlight=vincera

    In my case, they gave me CNS-chemo despite not being able to detect lymphoma cells in the spinal fluid. Just as a precaution, because it only has to be one damn cancer cell that has travelled to the spinal fluid. One cell. I didn't experience any (additional) symptoms due to the CNS-treatment (which is just a simple injection), so if it were me I would take the treatment if there is a real risk of being CNS-involvement. At least discuss this option with your team.
    Age: 34 (29 at diagnosis)
    Diagnosis: Burkitt's lymphoma, sporadic type (originally misdiagnosed as FL, then DLBCL)
    Stage: 2B, bulky disease
    Treatment: Began 8 cycles of R-CHOP 14 on 21 May 2010 + protocol. Discontinued treatment after 6 cycles due to misdiagnosis and switched to 3 cycles of R-CODOX-M/R-IVAC on 20 August 2010. Ended treatment with BEAM+Autologous SCT on 1 October 2010.
    In remission ever since.
    My story: http://www.cancerforums.net/threads/...s-old-My-story

  8. #18
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    Quote Originally Posted by schnauzer View Post
    My DLBCL diagnosis was preceded by a couple years of cranial neuropathies, for which I took prednisone. I was told that prednisone screwed up the results of a lumbar puncture, and that I had to go off prednisone for at least six weeks to get a good one. Dunno if that's the truth; it's just what I was advised by neurologists.
    That could well be the problem. My wife was initially diagnosed with asthma a few months ago and was prescribed prednisone, which made her temporarily better, no doubt because of its action against the lymphoma rather than anything else.

    Quote Originally Posted by schnauzer View Post
    I'm really terribly sorry your wife is going through this. I suggest the positive spin is that you're not grabbing at straws, instead your wife faces a choice between two good, effective regimes. Does the first doc make a case against adding Etoposide, other than it's rough stuff?

    Best wishes on this sad holiday season.
    Thanks - his advice was that the Etoposide was significantly worse in side effects for no proven benefit over R-CHOP against this subtype (the fact there is no benefit in "normal" DLBCL makes him think the same applies here). He made no mention of avoiding radiotherapy with it - we will certainly be asking him about that!

    While it is tough to have two experts contradicting each other it's much better to know all the options!

    Quote Originally Posted by Buffboy View Post
    I think Vincera posted a good post some time ago on lumbar punctures and CNS-involvement. Check it out here: http://www.cancerforums.net/threads/...hlight=vincera

    In my case, they gave me CNS-chemo despite not being able to detect lymphoma cells in the spinal fluid. Just as a precaution, because it only has to be one damn cancer cell that has travelled to the spinal fluid. One cell. I didn't experience any (additional) symptoms due to the CNS-treatment (which is just a simple injection), so if it were me I would take the treatment if there is a real risk of being CNS-involvement. At least discuss this option with your team.
    Thanks again Buffboy - the second consultant has suggested that if we stick with R-CHOP as a result of this intermediate PET scan he would give a dose of methyltrexate (sp?) in the spine at the end of R-CHOP just to deal with this risk. Our first consultant didn't mention any of this... although he may have had it in mind and didn't mention it so as not to overload us at the time (he has a rather annoying habit of doing this...).
    My Wife - Primary Mediastinal Diffuse Large B Cell Lymphoma
    Age 34 with 3 young children
    Stage 4 - 11x6cm primary mass with four other sites including bone / abdomen
    Elevated LDH
    Just started 6xR-CHOP14, likely to be followed by radiotherapy

  9. #19
    Senior User Buffboy's Avatar
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    Quote Originally Posted by TheHusband View Post
    Thanks again Buffboy - the second consultant has suggested that if we stick with R-CHOP as a result of this intermediate PET scan he would give a dose of methyltrexate (sp?) in the spine at the end of R-CHOP just to deal with this risk. Our first consultant didn't mention any of this... although he may have had it in mind and didn't mention it so as not to overload us at the time (he has a rather annoying habit of doing this...).
    Yes - metrothrexate is the drug for CNS. That's also what I got.
    Age: 34 (29 at diagnosis)
    Diagnosis: Burkitt's lymphoma, sporadic type (originally misdiagnosed as FL, then DLBCL)
    Stage: 2B, bulky disease
    Treatment: Began 8 cycles of R-CHOP 14 on 21 May 2010 + protocol. Discontinued treatment after 6 cycles due to misdiagnosis and switched to 3 cycles of R-CODOX-M/R-IVAC on 20 August 2010. Ended treatment with BEAM+Autologous SCT on 1 October 2010.
    In remission ever since.
    My story: http://www.cancerforums.net/threads/...s-old-My-story

  10. #20
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    OK so my wife, about to have her third round of R-CHOP this Friday, has started coughing again for the first time since starting chemo - nowhere near as bad as before but a cough nevertheless. Could just be a bit of hay fever or something but it's scaring me (and her no doubt although she remains positive).

    And then she had her first night sweat since starting chemo last night...

    And the experts are on leave over the Christmas break!

    Can anyone provide any comfort to us that they still had these types of symptoms during chemo? Starting to panic that the chemo isn't working and next PET scan isn't until the 10th Jan and we won't know the results until the consultant appt on the 14th Jan... don't know if we can wait that long with this stuff going on.
    My Wife - Primary Mediastinal Diffuse Large B Cell Lymphoma
    Age 34 with 3 young children
    Stage 4 - 11x6cm primary mass with four other sites including bone / abdomen
    Elevated LDH
    Just started 6xR-CHOP14, likely to be followed by radiotherapy

 

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