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Bone Marrow Transplant

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

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!

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

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's picture
lianadw
Posts: 72
Joined: Jan 2013

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's picture
COBRA666
Posts: 2418
Joined: May 2010

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's picture
jimwins
Posts: 1984
Joined: Aug 2011

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's picture
lianadw
Posts: 72
Joined: Jan 2013

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

hiccup (not verified)

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's picture
lianadw
Posts: 72
Joined: Jan 2013

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's picture
jimwins
Posts: 1984
Joined: Aug 2011

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's picture
lianadw
Posts: 72
Joined: Jan 2013

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's picture
epicc
Posts: 136
Joined: Nov 2012

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

hiccup (not verified)

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
Posts: 305
Joined: Aug 2011

What treatment are you getting?

Did it start already?

coachmike
Posts: 135
Joined: Oct 2011

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's picture
lianadw
Posts: 72
Joined: Jan 2013

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's picture
jimwins
Posts: 1984
Joined: Aug 2011

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

hiccup (not verified)

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's picture
Max Former Hodg...
Posts: 1018
Joined: May 2012

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's picture
lianadw
Posts: 72
Joined: Jan 2013

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's picture
anliperez915
Posts: 742
Joined: Sep 2011

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's picture
lianadw
Posts: 72
Joined: Jan 2013

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

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

Liana, Kick it!!!! You go girl!!

 

Much Love, Emily

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

Thanks Emily! Hope your mom is doing well with her treatments.

warmly,

Liana

Lucky_Horseshoe's picture
Lucky_Horseshoe
Posts: 15
Joined: Jan 2013

Dear Liana:

I too have struggled with NH Large B-Cell (Stage 4) Lymphoma.  I was diagnosed in January, 2010.  Did 8 rounds of RCHOP and 3 rounds of RICE?  RCHOP was tolerable.  RICE was not for me.  It left me very anemic and tired.  Had quite a few transfusions.  That stubborn Lymphoma wouldn't leave me alone either.  After all of that, my doctor at Karmanos Cancer Center said my best chance was a stem cell transplant.  None of my family was a perfect match; but, they did find a donor in Oregon that matched me close enough.  I was in the hospital for 40 days.  Graft Versus Host Disease took a hold of me right away and I was very sick.  The transplant took a lot of wind out of my sail; but, with the help of my friends and family, the isolation wasn't so bad.  A computer is a must to maintain some sanity.  I am 50 years old and  I have a 12 year old daughter.  They warned me it would be hard and it was.  In January, 2012 the lymphoma came back.  With my struggles, I will tell you that you are young and that is a GREAT thing in fighting this alien.  You sound like you have a great support system and that you are keeping healthy.  Good for you!!!  Stay strong.  You can get through it!  I am still sick with Graft Versus Host Disease; but, I have had two clean scans.  They have used the word remission for me and I had not heard it before.  I remain really hopeful that I have kicked cancer's butt this time around.

Good Luck and keep us updated,

Traci

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

Hi Traci,

Congrats on the two clean scans! I hope that trend continues for you.

I had my first RICE, which was tolerable in the hospital, but I've been wiped out since getting home. I have a little energy in the morning, and then am wiped out after making breakfast for the kids and tidying up my kitchen. I hope I get some of my energy back before the next RICE. I have one more scheduled, and then hopefully get to move on to mobilaztion for the BMT.

Planning on continuing to kick this things butt, although resting now between battles.

Cheers,

Liana

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Liana,

Please forgive my very late welcome to this wonderful and super supportive group.

Lately I just have not had the time to post as much as I would like. I do try to read as much as I can.

I have to agree with what everyone has been saying, your young and that really will help you. When or if you have weak moments, just know that they do pass and better days are ahead for you.

I have bounced back and forth between good and not so good days, with plenty of really crappy days thrown in. But with this great group of friends to push me on and hold my hand, I keep going. We are all here for you too.

Hang in there, you can do this.

So, belated welcome to you. And sending you wishes for a little less fatigue and a little more energy. Rest when you need to and stay warm.

Hugs,

Lisha

 

 

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

Hi Lisha,

Thanks for your kind words. I have found in the short time I've been connected to this community that it is very helpful and comforting. Many very good and supportive people here. And the shared exeperiences help alleviate my anxieties.

I did get out for a walk with my family for the first time in a week today. So I think my energy is on it's way back. Yay!

Warmly,

Liana

tom29mi's picture
tom29mi
Posts: 31
Joined: Jan 2004

hi lianadw i had a bmt two years ago this month with my own cells so theres a good chance i can answer any questions you may have

tom29mi's picture
tom29mi
Posts: 31
Joined: Jan 2004

hi lianadw i had a bmt two years ago this month with my own cells so theres a good chance i can answer any questions you may have

onlytoday's picture
onlytoday
Posts: 585
Joined: Jun 2010

Liana,

Sorry I'm so late jumping in here.  Welcome to our little community- very sorry you have to be here at all.  Hope you can kick it to the curb with your BMT and just get on with your life with your family.  You will find we all have slightly different journeys.  I have had chemo twice and am in a partial remission from Nodal Marginal Zone NHL stage IV.  My doc has talked transplant down the road.

I pray that your experience is an easy one.  We know it will have challenges but I hope they are few.  You have a fantastic attitude and a great support system with your family and then there's us!

Don't hesitate to reach out.  We are here for eachother.

Bless you,

Donna

Lucky_Horseshoe's picture
Lucky_Horseshoe
Posts: 15
Joined: Jan 2013

Dear Liana:

I too have struggled with NH Large B-Cell (Stage 4) Lymphoma.  I was diagnosed in January, 2010.  Did 8 rounds of RCHOP and 3 rounds of RICE?  RCHOP was tolerable.  RICE was not for me.  It left me very anemic and tired.  Had quite a few transfusions.  That stubborn Lymphoma wouldn't leave me alone either.  After all of that, my doctor at Karmanos Cancer Center said my best chance was a stem cell transplant.  None of my family was a perfect match; but, they did find a donor in Oregon that matched me close enough.  I was in the hospital for 40 days.  Graft Versus Host Disease took a hold of me right away and I was very sick.  The transplant took a lot of wind out of my sail; but, with the help of my friends and family, the isolation wasn't so bad.  A computer is a must to maintain some sanity.  I am 50 years old and  I have a 12 year old daughter.  They warned me it would be hard and it was.  In January, 2012 the lymphoma came back.  With my struggles, I will tell you that you are young and that is a GREAT thing in fighting this alien.  You sound like you have a great support system and that you are keeping healthy.  Good for you!!!  Stay strong.  You can get through it!  I am still sick with Graft Versus Host Disease; but, I have had two clean scans.  They have used the word remission for me and I had not heard it before.  I remain really hopeful that I have kicked cancer's butt this time around.

Good Luck and keep us updated,

Traci

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