Relapsed NHL-Rituxan Maintenance or Stem Cell?

2

Comments

  • caregiver1829
    caregiver1829 Member Posts: 51
    KC13167 said:

    SCT
    Danno-man,

    I just started a reply to you that just disappeared from my screen. It may show up when I close out, who knows!

    I was diagnosed with DLBC NHL stage IV in 06/2010. I had 6 rounds of R-CHOP and went into remission for a year. A few weeks ago, I relapsed with the same diagnosis and stage. I will have my second round of RICE later this week. I plan on having an auto SCT following the stem cell collection. In my case, I think it will offer me the best chance of the longest remission. Age may be a factor, I'm 52.

    I'm curious as to why you would collect and hold. Hold for what? It is my understanding that the transplant should be completed while in total remission. If there's another option, I'd like to hear what it is! Thanks!

    Kellie

    Kellie; my wifes collection was done the day before they did 6 days hd rice chemo then on the 7th day they put them back in.. yes it did remission but for just over a year and we re back in relapse now and they re recommending treanda/bendamustine.. sct auto is no fun n no gaurentees.. My wife says no way not again.. never.. caregiver..
  • caregiver1829
    caregiver1829 Member Posts: 51

    The best of luck to you!
    The best of luck to you Dan! Hope everything goes well for you, sending positive vibes your way.

    Sincerely,
    Liz

    dan
    has anyone heard from dan,, since december?? good nite..
  • Rachael1970
    Rachael1970 Member Posts: 4
    Stem Cell Transplant
    I had a stem cell transplant in 2006. They were able to harvest my own stem cells after giving me a research drug from San Diego to increase the production of my cells since them chemo (CHOP and ICE) did not resove all my lymphoma. I still had one reactive large node in my chest cavity. I was on the bone marrow transfusion unit for 3 months after. It was one of the worst things I have ever been through. I went down to 89lbs, sores/blisters all over my mouth, hands and feet. My skin peeled off like I was taking off a pair of gloves and socks. Extremely weak. BUT...I am in remission and i will be celebrating my 6th birthday this summer. If your levels are really good and they can go ahead and harvest your cells then i would tell you to do it. Harvesting the cells is nothing. They hook you up to like a dialysis machine and it is not bad. I hope i was able to answer some of your questions. If i can answer anything else you feel free to holler back!! congrats on your current remission!!
    Rachael
  • Susan55
    Susan55 Member Posts: 16
    Danco_man said:

    Third Opinion
    Just wanted to update everyone on my decision. After a ton of soul searching, questioning and extensive research on my part and the getting of a '3rd opinion'-I've decided to go for the SCT. I'm being admitted to the hospital a week from tomorrow.

    Not sure if this would be considered another opinion since in fact I already had 3 opinions. But what I decided to do in the end was to go back to one of the specialists that I saw initially and asked him to explain why he was recommending that I go with a different treatment option than what my primary Onc was suggesting (the SCT). Rather than simply go into all of own his reasons he asked me a bunch of questions about what Onc #1 had said.

    When I mentioned that my primary Doc felt STRONGLY that the transplant was the way to go because he knew me and my medical history better than any of the other consulting Docs who were simply looking at my numbers and medical records. When hearing this Onc # 2 did a total 'flip-flop' on me and said that if that was indeed the 'instinct' of an Onc that has been seeing me for 5 years- he himself would agree with that judgement. He then said that if I were to be his primary patient and his instinct was to go with a particular treatment he would most probably be making the same recommendation. The fact that he knew my primary Doc and obviously valued his judgement apparently swayed him to reconsider his position. I have to say it somewhat surprised me at first but knowing now that there is at least a little more agreement amongst the Docs has made my decision a little clearer in the end. Not to say that I still don't have some 'lingering doubts'- but does anyone ever really know with decisions of this type that they will be the right ones? Especially since the odds of 'cure' with the SCT that I've been given are 50/50.

    So tomorrow I'll be having a final PET and CT scan to be followed by all the usual pre-transplant tests later in the week. Right now I'm just trying to keep focused- since honestly the thought of the whole procedure still worries me to some degree- but hopefully all will go smoothly.

    Thanks again for everyone's advice and support. I'll keep you posted....

    Dan

    My husband is now facing the
    My husband is now facing the same as you a 50/50 decision are you OK?
  • Danco_man
    Danco_man Member Posts: 14

    Stem Cell Transplant
    I had a stem cell transplant in 2006. They were able to harvest my own stem cells after giving me a research drug from San Diego to increase the production of my cells since them chemo (CHOP and ICE) did not resove all my lymphoma. I still had one reactive large node in my chest cavity. I was on the bone marrow transfusion unit for 3 months after. It was one of the worst things I have ever been through. I went down to 89lbs, sores/blisters all over my mouth, hands and feet. My skin peeled off like I was taking off a pair of gloves and socks. Extremely weak. BUT...I am in remission and i will be celebrating my 6th birthday this summer. If your levels are really good and they can go ahead and harvest your cells then i would tell you to do it. Harvesting the cells is nothing. They hook you up to like a dialysis machine and it is not bad. I hope i was able to answer some of your questions. If i can answer anything else you feel free to holler back!! congrats on your current remission!!
    Rachael

    Possible relapse AGAIN
    Hi Everyone-

    Remember me? I’m the guy who started this discussion way back last Nov. I know I've been somewhat M.I.A for the past few months and for that I sincerely apologize.

    Well long story short...yesterday was a difficult day for me. I was told by my oncologist that my cancer "may have" relapsed once again. Just when I was beginning to think that I was ‘out of the woods’ this news I have to admit has hit me like a ton of bricks. Especially since it's been only about 90 days since my transplant.

    I'm still a bit in shock-and without the test results I will not know the outcome for several more days. The SCT was a success (or so i believed) back in January. I left the hospital the 3rd week of that month and was told that I was definitely in remission. The first 2 weeks after returning home I had some lingering nausea and pretty heavy fatigue-but by mid Feb./early March was starting to feel a little more like my old self. I have had several f/u visits with my onc. and just 2 weeks ago had a CT scan which was normal.

    About a week ago now I noticed that I was feeling somewhat more fatigued than usual-so made an appt. to get a 'check-up. Had the usual lab/blood work done prior to the exam but had NO idea of what I was about to hear. It seems that my counts are very low again and my spleen is "slightly" enlarged. This was not good news since this is where the Lymphoma decided to settle when I was diagnosed with my relapse last Sept.

    So immediately had a bone marrow biopsy done and will have another CT on Wed. Should know the results of both tests in 2-3 days- so will just have to wait and see. Trying HARD not to worry-but fact of the matter is I'm a worrier to begin with and this recent news has been nothing but worrisome.

    So the long and the short of it is that all the crap I went through having the transplant earlier this year may have been for naught. I'm hoping that's not the case and that all this may be is a viral infection of some kind or something else-but will not know for a few days.

    Anyone out there who either has had a sudden relapse after SCT or knows of someone who has? Would love to hear from you.

    My latest mantra....Be well STAY well,

    Best,

    Dan
  • Danco_man
    Danco_man Member Posts: 14

    Stem Cell Transplant
    I had a stem cell transplant in 2006. They were able to harvest my own stem cells after giving me a research drug from San Diego to increase the production of my cells since them chemo (CHOP and ICE) did not resove all my lymphoma. I still had one reactive large node in my chest cavity. I was on the bone marrow transfusion unit for 3 months after. It was one of the worst things I have ever been through. I went down to 89lbs, sores/blisters all over my mouth, hands and feet. My skin peeled off like I was taking off a pair of gloves and socks. Extremely weak. BUT...I am in remission and i will be celebrating my 6th birthday this summer. If your levels are really good and they can go ahead and harvest your cells then i would tell you to do it. Harvesting the cells is nothing. They hook you up to like a dialysis machine and it is not bad. I hope i was able to answer some of your questions. If i can answer anything else you feel free to holler back!! congrats on your current remission!!
    Rachael

    Possible relapse AGAIN
    Hi Everyone-

    Remember me? I’m the guy who started this discussion way back last Nov. I know I've been somewhat M.I.A for the past few months and for that I sincerely apologize.

    Well long story short...yesterday was a difficult day for me. I was told by my oncologist that my cancer "may have" relapsed once again. Just when I was beginning to think that I was ‘out of the woods’ this news I have to admit has hit me like a ton of bricks. Especially since it's been only about 90 days since my transplant.

    I'm still a bit in shock-and without the test results I will not know the outcome for several more days. The SCT was a success (or so i believed) back in January. I left the hospital the 3rd week of that month and was told that I was definitely in remission. The first 2 weeks after returning home I had some lingering nausea and pretty heavy fatigue-but by mid Feb./early March was starting to feel a little more like my old self. I have had several f/u visits with my onc. and just 2 weeks ago had a CT scan which was normal.

    About a week ago now I noticed that I was feeling somewhat more fatigued than usual-so made an appt. to get a 'check-up. Had the usual lab/blood work done prior to the exam but had NO idea of what I was about to hear. It seems that my counts are very low again and my spleen is "slightly" enlarged. This was not good news since this is where the Lymphoma decided to settle when I was diagnosed with my relapse last Sept.

    So immediately had a bone marrow biopsy done and will have another CT on Wed. Should know the results of both tests in 2-3 days- so will just have to wait and see. Trying HARD not to worry-but fact of the matter is I'm a worrier to begin with and this recent news has been nothing but worrisome.

    So the long and the short of it is that all the crap I went through having the transplant earlier this year may have been for naught. I'm hoping that's not the case and that all this may be is a viral infection of some kind or something else-but will not know for a few days.

    Anyone out there who either has had a sudden relapse after SCT or knows of someone who has? Would love to hear from you.

    My latest mantra....Be well STAY well,

    Best,

    Dan
  • allmost60
    allmost60 Member Posts: 3,178
    Danco_man said:

    Possible relapse AGAIN
    Hi Everyone-

    Remember me? I’m the guy who started this discussion way back last Nov. I know I've been somewhat M.I.A for the past few months and for that I sincerely apologize.

    Well long story short...yesterday was a difficult day for me. I was told by my oncologist that my cancer "may have" relapsed once again. Just when I was beginning to think that I was ‘out of the woods’ this news I have to admit has hit me like a ton of bricks. Especially since it's been only about 90 days since my transplant.

    I'm still a bit in shock-and without the test results I will not know the outcome for several more days. The SCT was a success (or so i believed) back in January. I left the hospital the 3rd week of that month and was told that I was definitely in remission. The first 2 weeks after returning home I had some lingering nausea and pretty heavy fatigue-but by mid Feb./early March was starting to feel a little more like my old self. I have had several f/u visits with my onc. and just 2 weeks ago had a CT scan which was normal.

    About a week ago now I noticed that I was feeling somewhat more fatigued than usual-so made an appt. to get a 'check-up. Had the usual lab/blood work done prior to the exam but had NO idea of what I was about to hear. It seems that my counts are very low again and my spleen is "slightly" enlarged. This was not good news since this is where the Lymphoma decided to settle when I was diagnosed with my relapse last Sept.

    So immediately had a bone marrow biopsy done and will have another CT on Wed. Should know the results of both tests in 2-3 days- so will just have to wait and see. Trying HARD not to worry-but fact of the matter is I'm a worrier to begin with and this recent news has been nothing but worrisome.

    So the long and the short of it is that all the crap I went through having the transplant earlier this year may have been for naught. I'm hoping that's not the case and that all this may be is a viral infection of some kind or something else-but will not know for a few days.

    Anyone out there who either has had a sudden relapse after SCT or knows of someone who has? Would love to hear from you.

    My latest mantra....Be well STAY well,

    Best,

    Dan

    Possible relapse...
    Hi Dan,
    Thanks for checking back in. I'm truely sorry it's not with better news. As you said though..."this all might be happening because of a viral infection, or something else", so maybe that will be the case. I've often wondered how your SCT went and how you were doing. I've not had one done..(yet), so I can't be of any help with your question...someone will know the answer, so keep checking in. Please share back as soon as you get both of the test results confirmed. Try to stay as peaceful as possible..I know.... easier said than done. UGH! You are in my prayers and I'll be thinking good positive thoughts that it's an infection or something simple to solve. Best wishes...Sue (FNHL-2-3A-6/10)
  • anliperez915
    anliperez915 Member Posts: 770
    Danco_man said:

    Possible relapse AGAIN
    Hi Everyone-

    Remember me? I’m the guy who started this discussion way back last Nov. I know I've been somewhat M.I.A for the past few months and for that I sincerely apologize.

    Well long story short...yesterday was a difficult day for me. I was told by my oncologist that my cancer "may have" relapsed once again. Just when I was beginning to think that I was ‘out of the woods’ this news I have to admit has hit me like a ton of bricks. Especially since it's been only about 90 days since my transplant.

    I'm still a bit in shock-and without the test results I will not know the outcome for several more days. The SCT was a success (or so i believed) back in January. I left the hospital the 3rd week of that month and was told that I was definitely in remission. The first 2 weeks after returning home I had some lingering nausea and pretty heavy fatigue-but by mid Feb./early March was starting to feel a little more like my old self. I have had several f/u visits with my onc. and just 2 weeks ago had a CT scan which was normal.

    About a week ago now I noticed that I was feeling somewhat more fatigued than usual-so made an appt. to get a 'check-up. Had the usual lab/blood work done prior to the exam but had NO idea of what I was about to hear. It seems that my counts are very low again and my spleen is "slightly" enlarged. This was not good news since this is where the Lymphoma decided to settle when I was diagnosed with my relapse last Sept.

    So immediately had a bone marrow biopsy done and will have another CT on Wed. Should know the results of both tests in 2-3 days- so will just have to wait and see. Trying HARD not to worry-but fact of the matter is I'm a worrier to begin with and this recent news has been nothing but worrisome.

    So the long and the short of it is that all the crap I went through having the transplant earlier this year may have been for naught. I'm hoping that's not the case and that all this may be is a viral infection of some kind or something else-but will not know for a few days.

    Anyone out there who either has had a sudden relapse after SCT or knows of someone who has? Would love to hear from you.

    My latest mantra....Be well STAY well,

    Best,

    Dan

    Hi Dan
    Hi Dan,
    Really sorry to hear that you may have a relapse again Dan. Man the things that you have gone through I can't even imagine! Don't loose faith and hang in there! I will be hoping for the best for you. Take care of yourself and please let us know what the doc says. (((Hugs)))

    Sincerely,
    Liz
  • Danco_man
    Danco_man Member Posts: 14

    Hi Dan
    Hi Dan,
    Really sorry to hear that you may have a relapse again Dan. Man the things that you have gone through I can't even imagine! Don't loose faith and hang in there! I will be hoping for the best for you. Take care of yourself and please let us know what the doc says. (((Hugs)))

    Sincerely,
    Liz

    Damn it....it's back
    Well not good news today. The test results came back and it's definitely another relapse. All I can say is that this REALLY sucks. I'm in the hospital now and it's going to be R-EPOCH this time. I don't have my computer so I'm typing this on my I-phone. More later...
  • jimwins
    jimwins Member Posts: 2,107
    Danco_man said:

    Damn it....it's back
    Well not good news today. The test results came back and it's definitely another relapse. All I can say is that this REALLY sucks. I'm in the hospital now and it's going to be R-EPOCH this time. I don't have my computer so I'm typing this on my I-phone. More later...

    Hang in there buddy :)
    Hi Dan,

    I'm so sorry to hear about the relapse - especially
    after all you've been through. You're in my thoughts.

    Big bear hugs,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
  • allmost60
    allmost60 Member Posts: 3,178
    Danco_man said:

    Damn it....it's back
    Well not good news today. The test results came back and it's definitely another relapse. All I can say is that this REALLY sucks. I'm in the hospital now and it's going to be R-EPOCH this time. I don't have my computer so I'm typing this on my I-phone. More later...

    Dang...
    So sorry Dan...I was hoping it was an infection and not a relapse. Keep us posted. Hope you don't have to be in the hospital for long. Best wishes...Sue (FNHL-2-3a-6/10)
  • vinny59
    vinny59 Member Posts: 1,032
    Danco_man said:

    Damn it....it's back
    Well not good news today. The test results came back and it's definitely another relapse. All I can say is that this REALLY sucks. I'm in the hospital now and it's going to be R-EPOCH this time. I don't have my computer so I'm typing this on my I-phone. More later...

    that sucks
    that really sucks, so sorry to hear that, easier said then done, but keep up the fight, and try to stay as positive as you can! Vinny
  • anliperez915
    anliperez915 Member Posts: 770
    Danco_man said:

    Damn it....it's back
    Well not good news today. The test results came back and it's definitely another relapse. All I can say is that this REALLY sucks. I'm in the hospital now and it's going to be R-EPOCH this time. I don't have my computer so I'm typing this on my I-phone. More later...

    Hi Dan
    Hi Dan,
    Really sorry to hear that it is back! Please take care of yourself and I'll keep you in my prayers that everything goes well for you! (((Hugs)))

    Sincerely,
    Liz
  • cbpgill26
    cbpgill26 Member Posts: 68 Member
    Danco_man said:

    Rituxin vs. Stem Cell
    Jim- Thanks for your feedback..also for your support.

    As far as Rituxan maintenance being used mostly for indolent lymphomas...you may be right. I've been doing searches all over the internet on this and haven't found many cases where this treatment is being used for aggresive NHL patients. Maybe that's why my two Dr's are not in agreement re: treatment options?

    After my relapse and two regimens of chemo...I was told that I am now in complete remission and considered to be somewhere in the middle (intermediate?)-as weird as that sounds??

    My real question however re: Rituxan maintenance vs. SCT is...which is the better option for cure or long term remission? I realize everybody's situation is different but does anyone know if the odds for success get less if I were to have the Stem cell collection ONLY now and the transplant later-after a possible 3rd relapse-should the Rituxan 'not do the trick'?

    My doc. said retuxin targets a specific thing and is a miracle drug used for both. But I am newly diagnosed and just had one chemo of Chops. Mine bega in the eye. Good luck.
  • cbpgill26
    cbpgill26 Member Posts: 68 Member
    Danco_man said:

    Possible relapse AGAIN
    Hi Everyone-

    Remember me? I’m the guy who started this discussion way back last Nov. I know I've been somewhat M.I.A for the past few months and for that I sincerely apologize.

    Well long story short...yesterday was a difficult day for me. I was told by my oncologist that my cancer "may have" relapsed once again. Just when I was beginning to think that I was ‘out of the woods’ this news I have to admit has hit me like a ton of bricks. Especially since it's been only about 90 days since my transplant.

    I'm still a bit in shock-and without the test results I will not know the outcome for several more days. The SCT was a success (or so i believed) back in January. I left the hospital the 3rd week of that month and was told that I was definitely in remission. The first 2 weeks after returning home I had some lingering nausea and pretty heavy fatigue-but by mid Feb./early March was starting to feel a little more like my old self. I have had several f/u visits with my onc. and just 2 weeks ago had a CT scan which was normal.

    About a week ago now I noticed that I was feeling somewhat more fatigued than usual-so made an appt. to get a 'check-up. Had the usual lab/blood work done prior to the exam but had NO idea of what I was about to hear. It seems that my counts are very low again and my spleen is "slightly" enlarged. This was not good news since this is where the Lymphoma decided to settle when I was diagnosed with my relapse last Sept.

    So immediately had a bone marrow biopsy done and will have another CT on Wed. Should know the results of both tests in 2-3 days- so will just have to wait and see. Trying HARD not to worry-but fact of the matter is I'm a worrier to begin with and this recent news has been nothing but worrisome.

    So the long and the short of it is that all the crap I went through having the transplant earlier this year may have been for naught. I'm hoping that's not the case and that all this may be is a viral infection of some kind or something else-but will not know for a few days.

    Anyone out there who either has had a sudden relapse after SCT or knows of someone who has? Would love to hear from you.

    My latest mantra....Be well STAY well,

    Best,

    Dan

    What a burden this is for us all. Continual worry, no pill and better. Pills, tests and on and on. I am new to it and already flailing into mindful hellish thoughts. I am thinking of you. Hugs.
  • onlytoday
    onlytoday Member Posts: 609 Member
    Danco_man said:

    Damn it....it's back
    Well not good news today. The test results came back and it's definitely another relapse. All I can say is that this REALLY sucks. I'm in the hospital now and it's going to be R-EPOCH this time. I don't have my computer so I'm typing this on my I-phone. More later...

    Uggghhh
    So sorry to hear your news. Praying that the new treatment works and you find Remission. I'm so disappointed for you. Hang in there friend.

    Hugs,
    Donna
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,795 Member
    Danco_man said:

    Damn it....it's back
    Well not good news today. The test results came back and it's definitely another relapse. All I can say is that this REALLY sucks. I'm in the hospital now and it's going to be R-EPOCH this time. I don't have my computer so I'm typing this on my I-phone. More later...

    Danco,

    It is very disheartening to hear that the stem cell proceedure failed. Hopefully the r-epoch will work for you. It is certainly at least a possibility. I have a dear friend who has fought prostate cancer for 13 years. The prostate was removed immediately 13 years ago, and he has been through pretty much everything in the book since: Multiple chemos, radiation, hormone therapy, etc. A normal PSA is about 0-4. His results two months ago were a 240 ! He since went on a new drug for pallatative care (not curative, but extends life). His last results were already down to 30, and he is feeling great, with no side-effects. I hope this drug combo will work good results for you.

    I had a severe pain in my lower right abdomen/pelvic area last month, and the docs could not find anything obvious, and did a CT. It found absolutely nothing, so they are still baffled. Of course I am profoundly thankful. My point is: Your story is potentially every person's story, so know we are pulling for you.

    Max
  • anya_nanda
    anya_nanda Member Posts: 1
    cbpgill26 said:

    What a burden this is for us all. Continual worry, no pill and better. Pills, tests and on and on. I am new to it and already flailing into mindful hellish thoughts. I am thinking of you. Hugs.

    Hi all
    Just read all your postings .. my mom recently had a relapsed NHL after just 2 months of RCHOP.She also had shingles and is in quite a lot of pain. The Oncologist recommended palliative therapy but we want to try aggressive therapy so if there is any chance of cure.
    Will keep all of you in my thoughts.

    God bless!
    annie
  • allmost60
    allmost60 Member Posts: 3,178

    Hi all
    Just read all your postings .. my mom recently had a relapsed NHL after just 2 months of RCHOP.She also had shingles and is in quite a lot of pain. The Oncologist recommended palliative therapy but we want to try aggressive therapy so if there is any chance of cure.
    Will keep all of you in my thoughts.

    God bless!
    annie

    Sorry
    Hi Annie,
    I'm so sorry about your moms relapse, and getting shingles. Oh my yes...the shingles are very painful! My husband had a very mild case 2 years ago and he was miserable. My grandmother also had them, but her shingles covered her right eye and extended up her forehead and all over her scalp. I hope your mom feels better soon and can start treatment for her relapse. My prayers are with you. Best wishes...Sue
    (Follicular NHL-stage3-grade2-typeA-diagnosed June 2010-age 61)
  • miss maggie
    miss maggie Member Posts: 929
    allmost60 said:

    Sorry
    Hi Annie,
    I'm so sorry about your moms relapse, and getting shingles. Oh my yes...the shingles are very painful! My husband had a very mild case 2 years ago and he was miserable. My grandmother also had them, but her shingles covered her right eye and extended up her forehead and all over her scalp. I hope your mom feels better soon and can start treatment for her relapse. My prayers are with you. Best wishes...Sue
    (Follicular NHL-stage3-grade2-typeA-diagnosed June 2010-age 61)

    Shingles
    My dear Sue,

    How I wish I had the shingle vaccine years before my DX of NHL. I understand once you are DX with Lymphoma you cannot have the shingle vaccine> Any thoughts on this from anyone??

    Love and hugs Maggie