A website for discussions about any type of cancer, including lung cancer, breast cancer, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others
+ Reply to Thread
Page 2 of 2 FirstFirst 1 2
Results 21 to 33 of 33

Thread: Stage 4 Primary Mediastinal DLBCL - any different?

  1. #21
    Senior User Buffboy's Avatar
    Join Date
    May 2010
    Location
    Copenhagen, Denmark
    Posts
    218
    The symptoms do not have to be caused by the lymphoma, although they obviously can.

    The cough could be from a simple respiratory infection, which is not unlikely given the time of the year (and being around children) and her lowered immune system due to the chemo.

    Night sweats can be experienced for a variety of reasons, including anxiety and chemo. I also had night sweats during treatment several times.

    Regardless, you are right to be concerned and should bring her symptoms to the attention of the medical team as soon as possible. Surely there is someone qualified to take care of situations like this even at christmas?

    How was her response to the first round of chemo - did her symptoms go away immediately, LDH go down and/or notable shrinkage of tumors that could be felt prior to treatment?

    In any event, try not to panic. That never helps in a situation like this. Instead, call the hospital and discuss her situation, maybe ask if you could push the upcoming scan forward by a week or two if the doctors think there is cause for concern.
    Age: 32 (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

  2. #22
    Regular User
    Join Date
    Dec 2011
    Location
    Perth, Western Australia
    Posts
    13
    Hi Buffboy

    Thanks yet again. Those symptoms disappeared within a few days of starting chemo and have only reappeared recently.

    The hospital doesn't seem to be testing LDH anymore looking at the blood test results we have. Will ask about this...

    We rang the hospital and they said to come in, which we did. They ran a full suite of tests - no infection, no significant fluid around the heart / lungs etc and they did a chest x-ray which makes it look like (compared to the pre-chemo one) that there is significantly less tumour in the mediastinum. Which is all quite encouraging really although I can't help but worry about that cough / night sweats given the history...

    We will get to speak to a haematologist on Friday now when we go in for the chemo treatment. Our list of questions is getting pretty long now!
    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. #23
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    Location
    South Australia
    Posts
    8,276
    Blog Entries
    2
    Hi

    The hospital doesn't seem to be testing LDH anymore looking at the blood test results we have. Will ask about this...
    LDH is not diagnostic in lymphoma, it is useful in prognosis however. This is why it is not being tested.

    Good luck with the remaining chemo
    Age 57
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  4. #24
    Regular User
    Join Date
    Dec 2011
    Location
    Perth, Western Australia
    Posts
    13
    My wife has just woken up and informs me her back pain has returned and her breathing is difficult again lying down as well. Which makes pretty much a full suite of symptoms from the original lymphoma - all not as bad as before but still there.

    This is not looking good...
    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. #25
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    Location
    South Australia
    Posts
    8,276
    Blog Entries
    2
    Hi TheHusband

    Don't panic. Your wife will experience pain as the tumors subside. This is due to the internal organs falling back into place after being displaced by the tumors. Also until the tumors have been markedly reduced it can be expected that your wife will still experience the issues she had before but to a lesser degree and this is what probably is happening. From your description of the latest x ray results your wifes lymphoma is responding well to the treatment, but at stage 4 this is a tough and long battle. It is good that you have a long list of questions to ask, its always best to ask the pros

    Read the rules in my Sig they may help.

    Cheers
    Age 57
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  6. #26
    Regular User
    Join Date
    Dec 2011
    Location
    Perth, Western Australia
    Posts
    13
    Hi everyone

    Thought I should provide an update.

    We ended up going with the second consultant's advice and commenced DA-EPOCH-R (21) over New Year's as an inpatient after two previous rounds of R-CHOP 14. Mouth ulcers, itchy eyes and fatigue are the main side effects and we are learning to manage them better as time goes on - these didn't happen with R-CHOP. Our consultant describes EPOCH as pushing you lower for longer and that's how it feels (for both of us!). We are going in for the the third of six treatments next week and she just has to sit there for four days on a drip. I've heard of others being able to do this at home but they say that's not an option here.

    The Dose Adjusted regime means twice weekly blood tests as well so we have been regulars at the hospital.

    We will have a PET scan after this third treatment to see how we are going. Her symptoms mentioned above pretty much disappeared after starting EPOCH so that is some comfort. We may be able to avoid radiotherapy although that is not a given by any means. We are also likely to have methrotrexate at the end of all this as a precaution for CNS involvement given her bone marrow and spinal involvement at the start.

    This last week we have been on twice daily Neupogen injections (administered by yours truly) to get to a stem cell harvest that happened yesterday. I gotta say the Hickman line is pretty full on and the bone pain was pretty strong too. Looks like we had a successful harvest so that is nice insurance for later. Still to be confirmed in the lab though next week so the Hickman line stays in for now...

    Anyway, that's where we are at for now - more wait and see while we try to get on with everyday life, like getting the kids to school and kindy... and I'm juggling looking after three kids while keeping my oar in at work after the kids have gone to bed.

    Wishing you all well and thanks again for the support in this thread!
    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

  7. #27
    Senior User
    Join Date
    Dec 2009
    Location
    United Kingdom
    Posts
    283
    Hi Husband

    Well it looks like you have your hands full at the moment!

    Reading back through your posts I think you always felt that the second opinion might prevail and it's good that your Wife is getting on with it. Also it's very encouraging that her symptoms have started to subside (albeit with some side effects from the treatment itself).

    You need to watch you don't burn out though. In our case, my Wife and I did relays with Tom's care because there were days when one or the other of us coped less well. Do you have anyone that can provide some respite from all the responsibilities you have? Don't be backward in asking people - as you will be more use in supporting your Wife if you are not wired yourself. It's an obvious thing to say, but sometimes you can be too close to see it.

    The very best of luck to you both and please keep us posted

    Cheers
    21 yr old male (Our Son)
    Diffuse Large B-Cell Non Hodgkins Lymphoma
    Stage 1A Mediastinal Mass 8cm x 7cm
    Diagnosed October 09
    Started course of 6 x R-CHOP 14 in Nov 09
    Course complete Jan 2010
    Remission declared March 4th 2010
    Continues in remission March 2014

  8. #28
    Regular User
    Join Date
    Dec 2011
    Posts
    14
    Hi TH,
    I have a similar case of PMBCL but it was found at an earlier stage in me. I was wondering if it seems as though the DA-EPOCH has been working better than the CHOP so far? I am hoping that it has been working great, but hadn't seen you update for a while and wanted to check in.

    Wishing the best and that you get as much support as possible while you guys are going through this together. I couldn't imagine doing this with three kids to feed and bathe every night on top of worrying about myself. You've been super strong and please know that we're thinking of you and praying for the best possible response.

    -Natasha

  9. #29
    Newbie New User
    Join Date
    Jan 2012
    Location
    Canberra, Australia
    Posts
    3
    Hi Husband

    Just saw your posts. I also have PMBCL and I'd say you are onto the right treatment with DA-REPOCH given that your wife has a more advanced case. If you haven't found it already you might like to join the PMBCL facebook group which is very active and supportive and lots of people having DA-REPOCH, there is a link to it on the PMBCL website which you can find if you type pmbcl into google. There is an active member of that group also in Perth who had stage 4 PMBCL who had DA-REPOCH and later involvement of CNS. Might be useful for you to connect with her if you haven't already. DA-REPOCH shows really good results for PMBCL. I really hope all goes well. Cheers Wendy

  10. #30
    Regular User
    Join Date
    Dec 2011
    Location
    Perth, Western Australia
    Posts
    13
    Hi everyone

    Sorry I only just saw the requests for an update. Things are positive so far with DA-EPOCH-R although the side effects are getting tough. My wife has just had all of this week in hospital with blood transfusions and has had bad mouth ulcers again. The rest of us have been very sick at home with the flu so it was good she could be in hospital while she was neutropenic.

    One of the things they suspected in hospital was a pulmonary embolism so they did a CT which was completely normal - no evidence of a mass in the mediastinum anymore or an embolism for that matter (turns out her symptoms were most likely reflux). While this is very encouraging we won't be drawing any conclusions until her first PET scan since diagnosis in the next week or two. If that is clear the doc reckons we may be able to cut short the treatment by a couple of rounds (6 rounds normally) to take into account the two rounds of R-CHOP 14 she has already had. He also wants to give a single dose of methotrexate at the end to ensure treatment of the CNS as CNS relapse is a particular risk with her bone involvement. We may also be able to avoid radiation therapy this way, which would be really nice - to me this is the main purported benefit of DA-EPOCH-R over R-CHOP although nothing is certain on this.

    Snudge - I do believe I indirectly know the person you are referring to as we both seem to be being treated by the same haematologist and he quotes the case on occasion (without names).

    Anyway, only another week or two before we know the story in more detail with the PET scan. Fingers crossed!
    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

  11. #31
    Regular User
    Join Date
    Dec 2011
    Location
    Perth, Western Australia
    Posts
    13
    Well, we have just had the PET scan results and it is completely clear! Hard to believe given where we were at previously but there you go...

    This is the best result we could have hoped for at this stage. We are now doing one more round of DA-EPOCH-R (4 in total plus 2xR-CHOP at the beginning), which will be followed up by 2 Methotrexate cycles to treat the CNS. Hopefully this keeps those PET scans clear in future. Consultant says radiotherapy is not necessary now which we are really happy about - he says avoiding radiotherapy to the mediastinum if possible is becoming more and more of a priority for treatment for many haematologists.

    Thanks again to everyone on this board for the advice and assistance...
    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

  12. #32
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    Location
    South Australia
    Posts
    8,276
    Blog Entries
    2
    Quote Originally Posted by TheHusband View Post
    Well, we have just had the PET scan results and it is completely clear! Hard to believe given where we were at previously but there you go...

    This is the best result we could have hoped for at this stage. We are now doing one more round of DA-EPOCH-R (4 in total plus 2xR-CHOP at the beginning), which will be followed up by 2 Methotrexate cycles to treat the CNS. Hopefully this keeps those PET scans clear in future. Consultant says radiotherapy is not necessary now which we are really happy about - he says avoiding radiotherapy to the mediastinum if possible is becoming more and more of a priority for treatment for many haematologists.

    Thanks again to everyone on this board for the advice and assistance...
    Oh that is fantastic news Go out and celebrate

    The important thing to remember now is exercise. The more the better. Eat well and sleep well and enjoy those trips around the Sun together, as it was meant to be

    Cheers
    Age 57
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  13. #33
    Senior User jmarek's Avatar
    Join Date
    Apr 2011
    Location
    South Milwaukee, Wisconsin
    Posts
    350
    Quote Originally Posted by TheHusband View Post
    Well, we have just had the PET scan results and it is completely clear! Hard to believe given where we were at previously but there you go...

    This is the best result we could have hoped for at this stage. We are now doing one more round of DA-EPOCH-R (4 in total plus 2xR-CHOP at the beginning), which will be followed up by 2 Methotrexate cycles to treat the CNS. Hopefully this keeps those PET scans clear in future. Consultant says radiotherapy is not necessary now which we are really happy about - he says avoiding radiotherapy to the mediastinum if possible is becoming more and more of a priority for treatment for many haematologists.

    Thanks again to everyone on this board for the advice and assistance...
    Congratulations on a clear Scan! I was thinking the same thing about the mediastinal area as I have others have had that and was wondering if it was going to be necessary in my case too.
    Take Care,
    Jeff
    Age 40
    Stage 4 Non-Hodgkin s Large B Cell Lymphoma
    Diagnosed on March 30th 2011/Staged on April 6th

    R-CHOP treatments
    First treatment: April 12th
    Eighth treatment: September 8th
    Have been in Remission since 9/2011

    "Yesterday is history, tomorrow is a mystery, and today is a gift, that's why its called the present"
    Dr. Wayne Dyer

 
+ Reply to Thread

Similar Threads

  1. Primary mediastinal large B-cell NHL
    By Kes_a in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 6
    Last Post: 10-28-2012, 09:41 PM
  2. My R CHOP experience as I go through it. Fighting DLBCL Stage 4b.
    By tzar in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 3
    Last Post: 04-05-2012, 12:51 AM
  3. Replies: 2
    Last Post: 03-12-2011, 04:57 PM
  4. Replies: 0
    Last Post: 03-11-2011, 06:52 PM
  5. Replies: 2
    Last Post: 02-28-2011, 04:19 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts