Bone Marrow Transplant

I'm new to this community, and feel I need to reach out to others on this crazy cancer journey. I was diagnosed with large b-cell lymphoma last October, and have had 6 cylces of chemotherapys so far. My last Pet scan showed a partial response, and so I've been referred for a bone marrow transplant, using my own bone marrow as it's clean. It would help me to hear of other's experiences with this treatment. The chemo so far has been manageable, and I know this next phase of treatment is going to wipe me out. Thanks for any thoughts, info, feedback, and shared experiences!

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Comments

  • cathyp
    cathyp Member Posts: 376 Member
    I can't offer any shared

    I can't offer any shared experiences as I had Hodgkins Disease treated with Rads and ABVD 23 years ago.  I do want to offer words of encouragement as you start your next phase of treatment.  Hang in there and best wishes.

    Cathy

     

  • lianadw
    lianadw Member Posts: 72
    cathyp said:

    I can't offer any shared

    I can't offer any shared experiences as I had Hodgkins Disease treated with Rads and ABVD 23 years ago.  I do want to offer words of encouragement as you start your next phase of treatment.  Hang in there and best wishes.

    Cathy

     

    Thank you

    Thank you for responding to my post and for your encouragment. Reaching out like this is new to me, but it seems there is a really supportive community here, and I think I'm going to be needing it more as my treatment intensifies.

     

    Liana

  • COBRA666
    COBRA666 Member Posts: 2,401
    large b-cell

    I will probably be of little help to you on large B-cell. I have small cell follicular. There are several people on here that do have your same diagnosis and I can't figure out why they haven't responded as of yet. I went thru 6 treatments of r-cvp and midway thru I had a little more than 50% shrinkage. They were mostly in my abdominal area. It was in the bone so it was stage #4. I followed up with 2  years of Rituxan every 6 months. I went into remission 2  1/2 years ago and been in remission ever since. The treatments are not easy but you will do it.  John

  • jimwins
    jimwins Member Posts: 2,107
    Welcome

    Welcome lianadw!  You will find great suport here.  Several people here have been through stem cell transplants so your are not alone.  Two who come to mind are "coachmike" who recently completed SCT and "hiccup" who will soon have a transplant. You will probably hear from them shortly.  I also had Diffuse Large B Cell Lymphoma - had a surgery and 6 cycles of R-EPOCH.  Thankfully, I have been blessed with remission for over a year now.  Stem Cell transplant was discussed by my oncologist should I have recurrence so I don't have personal experience to share.

    I read your profile and know you are a strong person and will get through this. 

    Positive thoughts and big hugs coming your way,

    Jim

     

  • lianadw
    lianadw Member Posts: 72
    jimwins said:

    Welcome

    Welcome lianadw!  You will find great suport here.  Several people here have been through stem cell transplants so your are not alone.  Two who come to mind are "coachmike" who recently completed SCT and "hiccup" who will soon have a transplant. You will probably hear from them shortly.  I also had Diffuse Large B Cell Lymphoma - had a surgery and 6 cycles of R-EPOCH.  Thankfully, I have been blessed with remission for over a year now.  Stem Cell transplant was discussed by my oncologist should I have recurrence so I don't have personal experience to share.

    I read your profile and know you are a strong person and will get through this. 

    Positive thoughts and big hugs coming your way,

    Jim

     

    Thank you!

    I appreciate the positive thoughts, kind words, and knowing I'm not alone in this. Liana

  • welcome!

    Hello Liana,

     

    Welcome ! Sealed I'm so sorry you had to find us in the first place, but I'm glad you did. There are a lot of great friends here to get help from.

     

    I too did 6 R-CHOP cycles, and still had progression as well. That, along with DLBCL makes you and I pretty close to one another kinda like cancer twins.. for lack of better words.

     

    Do you know yet which regimen you will follow for your autologous stem cell transplant?

     

    So far, I have undergone 4 R-ICE (Rituxan, Ifosfamide, Carboplatin, Etoposide) so far, and they aren't a walk in the park, but they are doable. If you have this regimen, you will have 4-5 day hospital stays with a fairly constant infusion. It is tedious, and I reccommend taking crafts with you... or your computer! The worst part I have had is with nausea, as it's so hard to find out what's right for you. I am constantly taking the nurses advice on how to double up meds and stay ahead of the nausea.

    Right now, I'm in the mobilization stage.. so Neupogen shots a plenty! I'm set to have BEAM chemo once I have collected enough stem cells. Fingers crossed!

    No matter what regimen you will end up following, you just gotta stay strong :) Let us know more about what's happening for you and there's bound to be someone here who's already climbed that mountain and has some advice :)

     

    -Nathan

  • lianadw
    lianadw Member Posts: 72
    unknown said:

    welcome!

    Hello Liana,

     

    Welcome ! Sealed I'm so sorry you had to find us in the first place, but I'm glad you did. There are a lot of great friends here to get help from.

     

    I too did 6 R-CHOP cycles, and still had progression as well. That, along with DLBCL makes you and I pretty close to one another kinda like cancer twins.. for lack of better words.

     

    Do you know yet which regimen you will follow for your autologous stem cell transplant?

     

    So far, I have undergone 4 R-ICE (Rituxan, Ifosfamide, Carboplatin, Etoposide) so far, and they aren't a walk in the park, but they are doable. If you have this regimen, you will have 4-5 day hospital stays with a fairly constant infusion. It is tedious, and I reccommend taking crafts with you... or your computer! The worst part I have had is with nausea, as it's so hard to find out what's right for you. I am constantly taking the nurses advice on how to double up meds and stay ahead of the nausea.

    Right now, I'm in the mobilization stage.. so Neupogen shots a plenty! I'm set to have BEAM chemo once I have collected enough stem cells. Fingers crossed!

    No matter what regimen you will end up following, you just gotta stay strong :) Let us know more about what's happening for you and there's bound to be someone here who's already climbed that mountain and has some advice :)

     

    -Nathan

    Going to the BMT clinic today

    Hi Nathan,

     

    Thank you for responding and sharing your experiences. While I'm sorry you have to be going through this too, it's comforting to have a "twin". I'm going to meet with a Doctor at the Stanford BMT clinic today, to get oriented to the upcoming treatment. I'm scheduled for another R-CHOP next week, but not sure yet wether that will happen or if we're switching gears on treatment. Have PET scan on friday to see if there is any further reduction in the cancer. Even if I get an all clear on the PET scan, the docs want me to do the BMT. The concern is that my cancer was very aggressive, my lungs were filled with fluid and there was fluid around my heart, all of which we believe was malignant, and that got reabsorbed into my body after the first two chemos. The docs worry that without the BMT there will be some lingering cancer cells ready to come back. Can't have that. Need to kick this thing to the curb. But the BMT and it's effect scare me a bit. I'm a typically energetic person, even with the chemo regimen, I have one slow week and two rather normal ones. The prospect of being wiped out for a couple months or more is not one I relish. And I have two kids, a 7yo and a 9yo, and not having energy for them scares me too.

    Let me know how the mobilization phase goes for you, and the next phases as well. I'll be sending good thoughts and energy your way!

    Liana

     

     

     

  • jimwins
    jimwins Member Posts: 2,107
    lianadw said:

    Going to the BMT clinic today

    Hi Nathan,

     

    Thank you for responding and sharing your experiences. While I'm sorry you have to be going through this too, it's comforting to have a "twin". I'm going to meet with a Doctor at the Stanford BMT clinic today, to get oriented to the upcoming treatment. I'm scheduled for another R-CHOP next week, but not sure yet wether that will happen or if we're switching gears on treatment. Have PET scan on friday to see if there is any further reduction in the cancer. Even if I get an all clear on the PET scan, the docs want me to do the BMT. The concern is that my cancer was very aggressive, my lungs were filled with fluid and there was fluid around my heart, all of which we believe was malignant, and that got reabsorbed into my body after the first two chemos. The docs worry that without the BMT there will be some lingering cancer cells ready to come back. Can't have that. Need to kick this thing to the curb. But the BMT and it's effect scare me a bit. I'm a typically energetic person, even with the chemo regimen, I have one slow week and two rather normal ones. The prospect of being wiped out for a couple months or more is not one I relish. And I have two kids, a 7yo and a 9yo, and not having energy for them scares me too.

    Let me know how the mobilization phase goes for you, and the next phases as well. I'll be sending good thoughts and energy your way!

    Liana

     

     

     

    Good luck today

    Hi Liana and good luck today!  Please share with us.  As you have seen, there are others about to go through this as well so any information may be helpful.  I understand your concern about your children but hopefully you have something in place for help with them during your recovery.  Right now, you need to focus on you which is focusing on them for the future Laughing.  I wish you the best and warmest positive energy coming your way.

    Hugs - Jim

  • lianadw
    lianadw Member Posts: 72
    jimwins said:

    Good luck today

    Hi Liana and good luck today!  Please share with us.  As you have seen, there are others about to go through this as well so any information may be helpful.  I understand your concern about your children but hopefully you have something in place for help with them during your recovery.  Right now, you need to focus on you which is focusing on them for the future Laughing.  I wish you the best and warmest positive energy coming your way.

    Hugs - Jim

    Thanks for the encouragement!

    HI Jim,

    It's been really helpful to connect here, and to hear other's experiences. I do have a number of things in place for both my own care during my recovery and for my children. But I'm the family organizer, planner, and scheduler, so letting go of that for awhile is really hard.

    I'll keep everyone updated as I move into this next phase of my treatment. I am very grateful for this community!

    Cheers,

    Liana

  • epicc
    epicc Member Posts: 137
    lianadw said:

    Thanks for the encouragement!

    HI Jim,

    It's been really helpful to connect here, and to hear other's experiences. I do have a number of things in place for both my own care during my recovery and for my children. But I'm the family organizer, planner, and scheduler, so letting go of that for awhile is really hard.

    I'll keep everyone updated as I move into this next phase of my treatment. I am very grateful for this community!

    Cheers,

    Liana

    Good Luck

    Hi Liana,

     

    Good Luck today!  I hope everything works out.  You sound like a very strong person.  R-CHOP is a tough chemo to go through.  My mom is 82 and could not get R-CHOP.  She was very very active before her diagnosis, but I'm sure age sill comes into play.  I have heard BMT is difficult but can get rid of the cancer for good.  Your kids are young and need their mommy for many more years.  I'm 48 and still need mine...LOL  I know things are going to work out great for you!  Hang in there.  Keep us updated. 

     

    Hugs,  Emily

  • lianadw said:

    Going to the BMT clinic today

    Hi Nathan,

     

    Thank you for responding and sharing your experiences. While I'm sorry you have to be going through this too, it's comforting to have a "twin". I'm going to meet with a Doctor at the Stanford BMT clinic today, to get oriented to the upcoming treatment. I'm scheduled for another R-CHOP next week, but not sure yet wether that will happen or if we're switching gears on treatment. Have PET scan on friday to see if there is any further reduction in the cancer. Even if I get an all clear on the PET scan, the docs want me to do the BMT. The concern is that my cancer was very aggressive, my lungs were filled with fluid and there was fluid around my heart, all of which we believe was malignant, and that got reabsorbed into my body after the first two chemos. The docs worry that without the BMT there will be some lingering cancer cells ready to come back. Can't have that. Need to kick this thing to the curb. But the BMT and it's effect scare me a bit. I'm a typically energetic person, even with the chemo regimen, I have one slow week and two rather normal ones. The prospect of being wiped out for a couple months or more is not one I relish. And I have two kids, a 7yo and a 9yo, and not having energy for them scares me too.

    Let me know how the mobilization phase goes for you, and the next phases as well. I'll be sending good thoughts and energy your way!

    Liana

     

     

     

    mobilization

    Liana,

     

    Thanks for the good thoughts-- they're helping me with these silly mouth sores. So far, so good! Keep us updated here on your journey :)

     

    -Nathan

  • DadysGirl
    DadysGirl Member Posts: 346
    unknown said:

    mobilization

    Liana,

     

    Thanks for the good thoughts-- they're helping me with these silly mouth sores. So far, so good! Keep us updated here on your journey :)

     

    -Nathan

    What treatment are you

    What treatment are you getting?

    Did it start already?

  • coachmike
    coachmike Member Posts: 155
    DadysGirl said:

    What treatment are you

    What treatment are you getting?

    Did it start already?

    I can help!!!

    Hey Liana

    I was diagnosed with DLBCL and underwent 11 rounds of chemo...4 REPOCH 4HYPER C VAD and 3 RICE...it showed a 99 percent remission but stll had that small annoying residual cancer. SOOOOO auto stem cell transplant we went. I went in 6/12/12 for the transplant and went home 4/2/13. In october of 2012 i received the words id been waiting so long to hear, No Evidence Of Disease! I have been in remission ever since and have a whole new outlook on life. I would love to answer any questions that you may have. I can tell you this...the transplant is hard but it is doable. It will test you and you will come out stronger than you ever thought you were. Please feel free to ask me anything I would love to tell you whatever I can. Also if you want you can message me as well. You got this!!!

    Coach Mike

     

  • lianadw
    lianadw Member Posts: 72
    coachmike said:

    I can help!!!

    Hey Liana

    I was diagnosed with DLBCL and underwent 11 rounds of chemo...4 REPOCH 4HYPER C VAD and 3 RICE...it showed a 99 percent remission but stll had that small annoying residual cancer. SOOOOO auto stem cell transplant we went. I went in 6/12/12 for the transplant and went home 4/2/13. In october of 2012 i received the words id been waiting so long to hear, No Evidence Of Disease! I have been in remission ever since and have a whole new outlook on life. I would love to answer any questions that you may have. I can tell you this...the transplant is hard but it is doable. It will test you and you will come out stronger than you ever thought you were. Please feel free to ask me anything I would love to tell you whatever I can. Also if you want you can message me as well. You got this!!!

    Coach Mike

     

    Thank you all for the words of encouragment and support!

    I met with the doc at stanford on Wed, and it really seems the right thing to do if I want to get rid of the cancer. It sounds like a difficult treatment, but after meeting with the doc and the nurse, who were pretty straight with me about how difficult it will be, I know I'll manage. Hearing from others how difficult R-Chop can be helps keep this in perspective, as I've managed really well with the R-CHOP.

    Had my PET scan today, and am hoping for good results. If it's good enough, some reduction in the tumor, we'll move forward with doing all the testing required for the BMT, and then mobilzation. If the cancer has progressed we need to first do some salvage chemo, something with a higher dose than the r-chop I've been receiving. My intuition tells me that there as been a reduction not a progression. I feel like I'm getting better. I hope I'm right. I feel like I have the final sprint of a long race before me, and while it's going to be tough, I want to get on with it and do it, and put this all behind me.

    Thanks again for all the kind words! It means a lot to me.

    Liana

     

  • jimwins
    jimwins Member Posts: 2,107
    lianadw said:

    Thank you all for the words of encouragment and support!

    I met with the doc at stanford on Wed, and it really seems the right thing to do if I want to get rid of the cancer. It sounds like a difficult treatment, but after meeting with the doc and the nurse, who were pretty straight with me about how difficult it will be, I know I'll manage. Hearing from others how difficult R-Chop can be helps keep this in perspective, as I've managed really well with the R-CHOP.

    Had my PET scan today, and am hoping for good results. If it's good enough, some reduction in the tumor, we'll move forward with doing all the testing required for the BMT, and then mobilzation. If the cancer has progressed we need to first do some salvage chemo, something with a higher dose than the r-chop I've been receiving. My intuition tells me that there as been a reduction not a progression. I feel like I'm getting better. I hope I'm right. I feel like I have the final sprint of a long race before me, and while it's going to be tough, I want to get on with it and do it, and put this all behind me.

    Thanks again for all the kind words! It means a lot to me.

    Liana

     

    Hi Liana

    Hi Liana and thanks for sharing.  As you can see here, you are not alone. I wish you the best and will be keeping warm and positive thoughts for you.  Coachmike is great as he's been through this and Nathan (Hiccup) is just gettng started too.  All of you are in my thoughts.

    Hugs - Jim

  • lianadw said:

    Thank you all for the words of encouragment and support!

    I met with the doc at stanford on Wed, and it really seems the right thing to do if I want to get rid of the cancer. It sounds like a difficult treatment, but after meeting with the doc and the nurse, who were pretty straight with me about how difficult it will be, I know I'll manage. Hearing from others how difficult R-Chop can be helps keep this in perspective, as I've managed really well with the R-CHOP.

    Had my PET scan today, and am hoping for good results. If it's good enough, some reduction in the tumor, we'll move forward with doing all the testing required for the BMT, and then mobilzation. If the cancer has progressed we need to first do some salvage chemo, something with a higher dose than the r-chop I've been receiving. My intuition tells me that there as been a reduction not a progression. I feel like I'm getting better. I hope I'm right. I feel like I have the final sprint of a long race before me, and while it's going to be tough, I want to get on with it and do it, and put this all behind me.

    Thanks again for all the kind words! It means a lot to me.

    Liana

     

    progress :)

    Liana--

     

    I sure hope you have some great results from the scan! I hope you can skip the salvage chemo and skip on forward!! I'm in mobilization right now and it's so doable so far. 

     

    Please stop by and keep us updated! I'm sending my healing vibes your way :)

     

    -Nathan

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    lianadw said:

    Thank you all for the words of encouragment and support!

    I met with the doc at stanford on Wed, and it really seems the right thing to do if I want to get rid of the cancer. It sounds like a difficult treatment, but after meeting with the doc and the nurse, who were pretty straight with me about how difficult it will be, I know I'll manage. Hearing from others how difficult R-Chop can be helps keep this in perspective, as I've managed really well with the R-CHOP.

    Had my PET scan today, and am hoping for good results. If it's good enough, some reduction in the tumor, we'll move forward with doing all the testing required for the BMT, and then mobilzation. If the cancer has progressed we need to first do some salvage chemo, something with a higher dose than the r-chop I've been receiving. My intuition tells me that there as been a reduction not a progression. I feel like I'm getting better. I hope I'm right. I feel like I have the final sprint of a long race before me, and while it's going to be tough, I want to get on with it and do it, and put this all behind me.

    Thanks again for all the kind words! It means a lot to me.

    Liana

     

    Advantages

    Liana,

    You have two big positives to assist you through this: Your youth, and your great attitude.  May you sail through and see C. R. very soon .

    max

  • lianadw
    lianadw Member Posts: 72

    Advantages

    Liana,

    You have two big positives to assist you through this: Your youth, and your great attitude.  May you sail through and see C. R. very soon .

    max

    Update

    Hi all,

    My pet scan results were not so good. There were 3 new areas of cancer activity. The tumor also should increased activity. So I'm now in the hospital getting the RICE chemo. I'll get two rounds, and then I'll start the mobilization phase of the Bone Marrow Transplant/stem cell rescue.  Celebrated Valentines Day yesterday with the family. While the Pet scan was not what i hoped for, I still feel positive about the treatment kicking cancer's butt. I will not let this take me down. I feel too healthy and have too much to live for. I did an awesome hike up a very steep hill on Sunday, my kids leading an impressive pace, and it felt really good and it was beautiful in the woods and on  top of the ridge. Did some kick boxing for the first time in months on Tuesday. I've decided to think of the treatment like a marathon, and I have to train my body to be strong to do it. I think it will help how I respond to and recover from the treatment. We'll see how I feel about this when I get released on Monday. At the very least I will continue my yoga and my easier walks. Maybe some just dance with the kids.

    Coach Mike, hearing your experience is really helpful. Were you really in the hospital from june 2012 to april 2013? Did I read that right? I'm hoping to do the bone marrow transplant in april, and to be home in may. Were you working before you got cancer? If you went back how long after the BMT did you go back? I've been on disability since Oct, and I went and visited everyone at work on Monday. It was so good to see everyone, and it makes me want to get back there. I'm hoping that I will be well enough 3 or 4 months after the BMT to ease my way back in.

    Hiccup, how are you doing? I'm righ behind you in the rather gruelling process. Got my PICC line in today, and it hurt more than when I got one last Oct. It's still sore. I'm thinking of you and sending good vibes and healing energy your way.

    Again thank you all for the support. It really helps!

    Liana

     

  • anliperez915
    anliperez915 Member Posts: 770
    Hi Liana

    Hi Liana,

    Really sorry for the late welcome, 

    Just didn't have any answers to your question although from reading all of your msg, I think you're doing very well with this whole ordeal. I guess we have to be when we have kids right! I also hope you do well with the SCT and that you kick cancers butt lol! Take care

    Sincerely,

    Liz

  • lianadw
    lianadw Member Posts: 72

    Hi Liana

    Hi Liana,

    Really sorry for the late welcome, 

    Just didn't have any answers to your question although from reading all of your msg, I think you're doing very well with this whole ordeal. I guess we have to be when we have kids right! I also hope you do well with the SCT and that you kick cancers butt lol! Take care

    Sincerely,

    Liz

    thank you!

    Hi Liz,

    Thanks for your support. This is an ordeal, but I'll get through it, as I see so many others here have. Hoping to get to that remission place this summer. Working on kicking cancer to the curb.

    Warmly,

    Liana