Relapsed NHL-Rituxan Maintenance or Stem Cell?

Danco_man
Danco_man Member Posts: 14
I recently was diagnosed with a relapse of NHL (diffuse large B-cell/aggressive). 4 years ago I was treated with R-CHOP and now they are giving me DHAP since I had a bad experience w/ RICE. After two treatments-I am presently in total remission My primary oncoligist (the Dr. who treated me 4 years ago) has recommended that I have an Auto Stem Cell transplant- HOWEVER a specialist who I have gotten a 2nd opinion from believes that the best treatment option for me right now is to have the collection ONLY (harvest and hold) and then go on a maintenance program of Rituxan once every 2 months for two years. I'm not sure which is the better way to go. Anyone been in a similar situation?
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Comments

  • jimwins
    jimwins Member Posts: 2,107
    Rituxan vs Stem Cell
    Welcome Danco_man,

    Sorry you have relapsed. You will find wonder caring and supportive folks here.

    I recently finished R-EPOCH for diffuse large B Cell lymphoma my first
    and hopefully last treatment. Mine was primarily in the small intestine
    and mesentery area.

    Regarding your question, I thought Rituxan maintenance was used primarily
    for indolent (slow growing) lymphomas - I could be wrong. The advantage of
    going the Rituxan route is you buy time before having to go through a
    stemcell transplant.

    I don't have experience with your exact situation but hopefully someone
    will chime in here soon who does.

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. ☺☺☺
    Members are sharing recipes!:
    ♥ Recipe Sharing Project
  • Danco_man
    Danco_man Member Posts: 14
    jimwins said:

    Rituxan vs Stem Cell
    Welcome Danco_man,

    Sorry you have relapsed. You will find wonder caring and supportive folks here.

    I recently finished R-EPOCH for diffuse large B Cell lymphoma my first
    and hopefully last treatment. Mine was primarily in the small intestine
    and mesentery area.

    Regarding your question, I thought Rituxan maintenance was used primarily
    for indolent (slow growing) lymphomas - I could be wrong. The advantage of
    going the Rituxan route is you buy time before having to go through a
    stemcell transplant.

    I don't have experience with your exact situation but hopefully someone
    will chime in here soon who does.

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. ☺☺☺
    Members are sharing recipes!:
    ♥ Recipe Sharing Project

    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'?
  • KC13167
    KC13167 Member Posts: 215
    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'?

    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
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 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'?

    Not an expert
    but we had a good friend die last year, 12 months following a failed stem cell transplant. Her particular problem was that she was so sick from multiple chemotherapeutic regimens (multiple failures for Mantle Cell Ca) that her stem cell population was very low, necessitating a prolonged effort to harvest. And clearly the stem cell population wasn't healthy at the time of harvest. She therefore failed to establish a viable bone marrow after transplant, with the usual results.

    OTOH, I wonder how long they can reasonably bank stem cells, if they are harvested in advance. I don't know the answers, just have seen some of the problems.

    Best regards,

    Pat
  • allmost60
    allmost60 Member Posts: 3,178
    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

    Good luck...
    Hi Kellie,
    Just wanted to say good luck this week with your second round of RICE. Hope you are handling it ok. My thoughts and prayers are with you friend. Take care...Sue (FNHL-2-3A-6/10)
  • Danco_man
    Danco_man Member Posts: 14
    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

    SCT
    Hi Kellie,

    The "disappearing" reply-don't you hate when that happens? Same thing just happened to me. Personally, I don't find this website all that easy to manuever...

    Anyway what I started to tell you before disappearing is that you may have some options- short of SCT when DLBC relapses.

    Your stem cells are good apparently for 10 years in a frozen state. The chances of a successful SCT is just 40% (according to the transplant experts) and to me those aren't great odds ESPECIALLY considering the risks (not to mention the hassles) involved with the procedure itself (lowered immunities, extended hospital stays, more chemo, etc.). The collection for me is just a "pre-cautionary" measure should the other options not work. Your cells can be 'banked' for 10 or more years-and frankly I'm hoping to never have to use them

    Unlike you-I relapsed after 4 years- so by comparison to your situation I guess I would be considered lucky. For me the cure was to have been R-CHOP-but it didn't quite work out that way. (Btw-I'm 62 years old and told I'm in good health).

    After doing some research on my own and getting several 2nd opinions- I learned that there are maintenance programs that seem to work for us DBLCers IF you are already in remission. By the sounds of it you are not yet there (total remission)-but when you are (and I hope it happens soon) you may want to check some of the links on the L&L Society website re: your options. Here's one that was sent to me:

    http://www.nhlcyberfamily.org/types/dlbcrelapse.htm

    BTW- I also had D-ICE- but it caused me to hallucinate (not a bad side effect if you have to have one)- so they put me on something called R-DHAP instead. It (the D-ICE) couldn't have been all that bad because after just one treatment I was in remission (lucky again?).


    Good luck...I hope I have been of some help.
  • KC13167
    KC13167 Member Posts: 215
    allmost60 said:

    Good luck...
    Hi Kellie,
    Just wanted to say good luck this week with your second round of RICE. Hope you are handling it ok. My thoughts and prayers are with you friend. Take care...Sue (FNHL-2-3A-6/10)

    2nd round
    Thank you Sue.

    RICE is tougher than my R-CHOP was. My hair started falling out on day 14 following my first chemo day. I've had one transfusion of two units of packed RBCs and one hospital admission due to fever and back pain. I go in twice weekly for labs. The nice part about going in for labs is that they flush and will change the dressing on my trifusion port, if it's the day for it. Today I see the doctor too.

    I think of everyone and keep you all in my prayers!
    Kellie
  • KC13167
    KC13167 Member Posts: 215
    Danco_man said:

    SCT
    Hi Kellie,

    The "disappearing" reply-don't you hate when that happens? Same thing just happened to me. Personally, I don't find this website all that easy to manuever...

    Anyway what I started to tell you before disappearing is that you may have some options- short of SCT when DLBC relapses.

    Your stem cells are good apparently for 10 years in a frozen state. The chances of a successful SCT is just 40% (according to the transplant experts) and to me those aren't great odds ESPECIALLY considering the risks (not to mention the hassles) involved with the procedure itself (lowered immunities, extended hospital stays, more chemo, etc.). The collection for me is just a "pre-cautionary" measure should the other options not work. Your cells can be 'banked' for 10 or more years-and frankly I'm hoping to never have to use them

    Unlike you-I relapsed after 4 years- so by comparison to your situation I guess I would be considered lucky. For me the cure was to have been R-CHOP-but it didn't quite work out that way. (Btw-I'm 62 years old and told I'm in good health).

    After doing some research on my own and getting several 2nd opinions- I learned that there are maintenance programs that seem to work for us DBLCers IF you are already in remission. By the sounds of it you are not yet there (total remission)-but when you are (and I hope it happens soon) you may want to check some of the links on the L&L Society website re: your options. Here's one that was sent to me:

    http://www.nhlcyberfamily.org/types/dlbcrelapse.htm

    BTW- I also had D-ICE- but it caused me to hallucinate (not a bad side effect if you have to have one)- so they put me on something called R-DHAP instead. It (the D-ICE) couldn't have been all that bad because after just one treatment I was in remission (lucky again?).


    Good luck...I hope I have been of some help.

    Ty
    Thank you Danco_man.

    That's good food for thought. Ihad tried to get into a phase III study but my grade had changed making me ineligible. This med has had an 80% success rate. I will look through my stuff and find the name for you later. Off to the doctors now. Bty, the med starts with an "O" and has been used in Europe. I can see where saving cells may be advantageous, as in saving until this med is available to all relapsed DLBCers


    I appreciated your info!
    Kellie
  • W John
    W John Member Posts: 2
    Same decision
    Hey Man, I was diagnosed in June with MCL. I have gone through six infusions of rituxan/treanda and tomorrow I am going for post treatment Pet scan and bone marrow biopsy. The results will bring me the same choices you are facing, hopefully anyway. I would rather use the rituxan as a maintainence and keep the transplant option in reserve.
  • po18guy
    po18guy Member Posts: 1,261 Member
    Transplant vs. Maintenance
    I have my stem cells banked. 95% efficacy after 5 years in cryogenic storage. My NHL (Peripheral T-Cell NOS) relapsed immediately after 16 rounds of EPOCH and GVD. What occurred next was providential. Clinical trial of a new H-DAC inhibitor. It put me in complete response and I remain there through monthly cycle 37. Doctor cites studies that show that those who relapse and respond to a novel therapy receive the same benefit as those undergoing a transplant - but without the dangers and after effects of a transplant. Transplants are tough, still considered experimental, and I do not like that 7% chance of developing yet another cancer. From the WebMD site:

    "Severe, often life-threatening infection can develop after a stem cell transplant. You will need to take antibiotics for several months to prevent infection. Your immune system may take 1 to 2 years or longer to recover after a transplant."

    Look into the possibility of a clinical trial. The drug that I receive is not chemo, and its aide effects are much milder. I am part of a study which is determining the long-term side effects. Yet, I still retain the option of a transplant if nothing else is effective.
  • Danco_man
    Danco_man Member Posts: 14
    po18guy said:

    Transplant vs. Maintenance
    I have my stem cells banked. 95% efficacy after 5 years in cryogenic storage. My NHL (Peripheral T-Cell NOS) relapsed immediately after 16 rounds of EPOCH and GVD. What occurred next was providential. Clinical trial of a new H-DAC inhibitor. It put me in complete response and I remain there through monthly cycle 37. Doctor cites studies that show that those who relapse and respond to a novel therapy receive the same benefit as those undergoing a transplant - but without the dangers and after effects of a transplant. Transplants are tough, still considered experimental, and I do not like that 7% chance of developing yet another cancer. From the WebMD site:

    "Severe, often life-threatening infection can develop after a stem cell transplant. You will need to take antibiotics for several months to prevent infection. Your immune system may take 1 to 2 years or longer to recover after a transplant."

    Look into the possibility of a clinical trial. The drug that I receive is not chemo, and its aide effects are much milder. I am part of a study which is determining the long-term side effects. Yet, I still retain the option of a transplant if nothing else is effective.

    Roller Coaster
    Thanks everyone for your feedback.

    Despite all the info and goood advice I've been getting lately-I have to admit I am probably more confused now than before as to what is the best opotion for treatment given my situation. A definite case of 'information overload'. It's been a real roller-coaster ride these last few days. I think I've probably made up my mind and changed it at least twenty times by now.

    I had the collection on Tuesday (they got 10 million of the little suckers in one day) and although I once thought I would not move forward with the stem cell transplant now...I am somewhat leaning more in that direction after speaking further with several specialists and reading more about the alternative treatment options.

    Although I still haven't made my final decision-I'm beginning to believe -that having the SCT now and the maintenance later may just be the best way to go. Even though the odds of relapse after transplant are nearly 50% this option would still seem to offer me the best chance to achieve a 'cure'- where the maintenance is all about keeping in remission.

    Obviously I'm not looking forward to the extended chemo, hospitalization and isolation not to mention the potential risks of infection and getting other cancers- but somehow I feel that the way I should be viewing this is from the perspective that if there is a chance for a cure I should go for it!

    If there is anyone out there who has had a successful transplant (or NOT) after relapse I would love to hear from you. Obviously time is of the essence- since if I move foward with the transplant NOW rather than just bank the cells for possible future use and go with the maintenace I would need to inform my Drs. of my decision in no more than 7-10 days- at least that's what I've been told.

    Tough decision and one that I'm still not sure I have FINALLY made...

    Dan
  • dixiegirl
    dixiegirl Member Posts: 1,043
    Danco_man said:

    Roller Coaster
    Thanks everyone for your feedback.

    Despite all the info and goood advice I've been getting lately-I have to admit I am probably more confused now than before as to what is the best opotion for treatment given my situation. A definite case of 'information overload'. It's been a real roller-coaster ride these last few days. I think I've probably made up my mind and changed it at least twenty times by now.

    I had the collection on Tuesday (they got 10 million of the little suckers in one day) and although I once thought I would not move forward with the stem cell transplant now...I am somewhat leaning more in that direction after speaking further with several specialists and reading more about the alternative treatment options.

    Although I still haven't made my final decision-I'm beginning to believe -that having the SCT now and the maintenance later may just be the best way to go. Even though the odds of relapse after transplant are nearly 50% this option would still seem to offer me the best chance to achieve a 'cure'- where the maintenance is all about keeping in remission.

    Obviously I'm not looking forward to the extended chemo, hospitalization and isolation not to mention the potential risks of infection and getting other cancers- but somehow I feel that the way I should be viewing this is from the perspective that if there is a chance for a cure I should go for it!

    If there is anyone out there who has had a successful transplant (or NOT) after relapse I would love to hear from you. Obviously time is of the essence- since if I move foward with the transplant NOW rather than just bank the cells for possible future use and go with the maintenace I would need to inform my Drs. of my decision in no more than 7-10 days- at least that's what I've been told.

    Tough decision and one that I'm still not sure I have FINALLY made...

    Dan

    I have
    I have Follicular Stage 3 and I had cancer 4 times in 5 years. I had a SCT in June of this year. My hope is to have at least a 5-6 year remission, but my transplant doc said I have a 50% shot at a cure! He said I have a 20% chance of recurrence of my lymphoma and a 4% chance of getting leukemia. Personally I like the idea of a possible cure since I've always been told that there is no cure for indolent lymphoma. He said they've come a long way with research that hasn't been published.

    I had my 6 month scan this last Monday and go see the doc tomorrow afternoon. I went and got a copy of the CD and from what I can tell I am still in remission, although I did have some uptake near my esophagus. They mentioned that if called for an EGD will determine what it is. I'm not having any issues so hopefully they won't want to do it. I've had this test before and hated it.

    I am feeling good and can't complain about anything. I won't lie, the SCT was hard but doable. I hope this helps.

    Beth
  • onlytoday
    onlytoday Member Posts: 609 Member
    Danco_man said:

    Roller Coaster
    Thanks everyone for your feedback.

    Despite all the info and goood advice I've been getting lately-I have to admit I am probably more confused now than before as to what is the best opotion for treatment given my situation. A definite case of 'information overload'. It's been a real roller-coaster ride these last few days. I think I've probably made up my mind and changed it at least twenty times by now.

    I had the collection on Tuesday (they got 10 million of the little suckers in one day) and although I once thought I would not move forward with the stem cell transplant now...I am somewhat leaning more in that direction after speaking further with several specialists and reading more about the alternative treatment options.

    Although I still haven't made my final decision-I'm beginning to believe -that having the SCT now and the maintenance later may just be the best way to go. Even though the odds of relapse after transplant are nearly 50% this option would still seem to offer me the best chance to achieve a 'cure'- where the maintenance is all about keeping in remission.

    Obviously I'm not looking forward to the extended chemo, hospitalization and isolation not to mention the potential risks of infection and getting other cancers- but somehow I feel that the way I should be viewing this is from the perspective that if there is a chance for a cure I should go for it!

    If there is anyone out there who has had a successful transplant (or NOT) after relapse I would love to hear from you. Obviously time is of the essence- since if I move foward with the transplant NOW rather than just bank the cells for possible future use and go with the maintenace I would need to inform my Drs. of my decision in no more than 7-10 days- at least that's what I've been told.

    Tough decision and one that I'm still not sure I have FINALLY made...

    Dan

    Third Opinion??
    Dan,

    When I was originally diagnosed (May 2010) NMZ NHL Stage IV, I had two differing opinions on my tx as well. So I went to Sloan Kettering to see what they thought. They agreed with my doc in Philly and I've stayed with them both ever since, always going to Sloan for that second opinion. The Philly doc and Sloan talk about my case and I feel very confident that I'm in good hands. They also know that if they ever differ I won't hesitate to get a third, fourth .... opinion.

    I have not been in your position but I just wanted to add my two cents. I would recommend getting a third opinion on your options and I see that you have spoke to several specialists which is great. (although confusing I'm sure...)

    I don't know what you'll decide but I wish you the best- we are here for you. You will make the right decision!

    Prayers.

    Donna
  • Danco_man
    Danco_man Member Posts: 14
    onlytoday said:

    Third Opinion??
    Dan,

    When I was originally diagnosed (May 2010) NMZ NHL Stage IV, I had two differing opinions on my tx as well. So I went to Sloan Kettering to see what they thought. They agreed with my doc in Philly and I've stayed with them both ever since, always going to Sloan for that second opinion. The Philly doc and Sloan talk about my case and I feel very confident that I'm in good hands. They also know that if they ever differ I won't hesitate to get a third, fourth .... opinion.

    I have not been in your position but I just wanted to add my two cents. I would recommend getting a third opinion on your options and I see that you have spoke to several specialists which is great. (although confusing I'm sure...)

    I don't know what you'll decide but I wish you the best- we are here for you. You will make the right decision!

    Prayers.

    Donna

    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
  • allmost60
    allmost60 Member Posts: 3,178
    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

    Best wishes
    Hi Dan,
    I'll keep positive good thoughts that all goes well for you. You will be busy in the weeks to come, but hopefully you'll find time to drop in and tell us how things are going. Keeping you in my prayers. Sue (FNHL-2-3A-6/10)
  • vinny59
    vinny59 Member Posts: 1,032
    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

    Good luck
    Dan wishing you well, Vinny
  • anliperez915
    anliperez915 Member Posts: 770
    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

    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
  • caregiver1829
    caregiver1829 Member Posts: 51
    jimwins said:

    Rituxan vs Stem Cell
    Welcome Danco_man,

    Sorry you have relapsed. You will find wonder caring and supportive folks here.

    I recently finished R-EPOCH for diffuse large B Cell lymphoma my first
    and hopefully last treatment. Mine was primarily in the small intestine
    and mesentery area.

    Regarding your question, I thought Rituxan maintenance was used primarily
    for indolent (slow growing) lymphomas - I could be wrong. The advantage of
    going the Rituxan route is you buy time before having to go through a
    stemcell transplant.

    I don't have experience with your exact situation but hopefully someone
    will chime in here soon who does.

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. ☺☺☺
    Members are sharing recipes!:
    ♥ Recipe Sharing Project

    stem cell rituxin and treanda
    A hi danco man and jimwns;
    I'm familar with the big b,, and stem cell transplant.. my wife was diagnosied in o8 with filiclular and was treated with rchop, put n remission, then n 2010 we had relapse of filicular plus big b along with it, we did stem cell with draw, then rice chemo for 6 days straight at jewish,cincy oh knocked it off screen.. start rituxin maint in july 2011 of 4 treatments in 4 weeks then again this Jan 2012 and took pt scan 2 weeks ago and something is back in the area Jim is talking about.. we re doing biopsy Mar 1 to see what is back and how much.. as of now onc dr is leaning toward a realative new drug Bendamustine generic for Treanda.. we ll probally start something sometime in April..

    from what i listen to on u-tube and read about it is a real favorable path to travel.. I will tell you more once we have our results back as to what path we ve decided to go down.. you might want to ask your onc dr about this Trenda treatment ...My wife did stem cell autogrotus and she says she ll never do it again, its pretty tough treatment to get thru.. she had an OUT OF BODY EXPERIENCE.. and she said that scared the H out of her.. go to u-tube and type in treanda and listen to some of the doc's on Treanda and bendamusdine drugs, hope this is of some use for you.. caregiver..
  • caregiver1829
    caregiver1829 Member Posts: 51
    jimwins said:

    Rituxan vs Stem Cell
    Welcome Danco_man,

    Sorry you have relapsed. You will find wonder caring and supportive folks here.

    I recently finished R-EPOCH for diffuse large B Cell lymphoma my first
    and hopefully last treatment. Mine was primarily in the small intestine
    and mesentery area.

    Regarding your question, I thought Rituxan maintenance was used primarily
    for indolent (slow growing) lymphomas - I could be wrong. The advantage of
    going the Rituxan route is you buy time before having to go through a
    stemcell transplant.

    I don't have experience with your exact situation but hopefully someone
    will chime in here soon who does.

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. ☺☺☺
    Members are sharing recipes!:
    ♥ Recipe Sharing Project

    stem cell rituxin and treanda
    A hi danco man and jimwns;
    I'm familar with the big b,, and stem cell transplant.. my wife was diagnosied in o8 with filiclular and was treated with rchop, put n remission, then n 2010 we had relapse of filicular plus big b along with it, we did stem cell with draw, then rice chemo for 6 days straight at jewish,cincy oh knocked it off screen.. start rituxin maint in july 2011 of 4 treatments in 4 weeks then again this Jan 2012 and took pt scan 2 weeks ago and something is back in the area Jim is talking about.. we re doing biopsy Mar 1 to see what is back and how much.. as of now onc dr is leaning toward a realative new drug Bendamustine generic for Treanda.. we ll probally start something sometime in April..

    from what i listen to on u-tube and read about it is a real favorable path to travel.. I will tell you more once we have our results back as to what path we ve decided to go down.. you might want to ask your onc dr about this Trenda treatment ...My wife did stem cell autogrotus and she says she ll never do it again, its pretty tough treatment to get thru.. she had an OUT OF BODY EXPERIENCE.. and she said that scared the H out of her.. go to u-tube and type in treanda and listen to some of the doc's on Treanda and bendamusdine drugs, hope this is of some use for you.. caregiver..
  • caregiver1829
    caregiver1829 Member Posts: 51
    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'?

    later
    danco i wrote a large piece undr reply to Jimwin just a few minutes go down and find it,, I d have to think twice about sct,, like everything in cancer theres no guarntees on anything and sct is not any more guarnteed then the chemos// caregiver..