What to hear success stories bcell NHL .

Toughasnails
Toughasnails Member Posts: 12
in Lymphoma (Hodgkin and Non-Hodgkin) #1
All,

Here is my story I got my DX in February the doc said it is curable thank God I got engaged 9 days earlier and then we wee dealing with treatment. So we will marry in January.

The DX was small cell with some medium cells it is the CD 20 cell. I have been through 4 straight Retuxin treatments, then several rounds of CVP, 4rounds of Chop, now the last two are back to CVP. I am hooked up now as I write, the last one is on August 30. The doc tells me we will see how deep a remission I am in but the curable disease he tells me can come back. It is a matter of how long it could be a couple of years, mabe five years. I have been to the specialist that tells me he will extract Stem cells and if I have a recurrance I can be treated then get a transplant. For the first time I am scarred that I will never get rid of this disease. I am told that I will most likely liver my who life expectancy but I may have to deal with this over and over again since I am young, I turn 49 on August 26.

Is there anyone out there that has had 5 plus years an no reoccurrence? I just need to hear some success stories. My spirits are high and will strong I will not succumb to negative thinking. Please tell me your success stories.

Thanks,

Valen
toughasnails.

Comments

  • po18guy
    po18guy Member Posts: 1,508 Member
    #2
    I'm IN my fifth year, if that counts...
    I developed a rare T-Cell lymphoma (PTCL-NOS) in probably April, 2008. After receiving a double regimen of eight dose-intensive chemo drugs, I was pronounced to be in remission as of the end of December, 2008. T-Cell lymphoma is known for relapses, and relapse it did - immediately. It was back in stage 1 by the end of February, 2009. I joined a clinical trial of an experimental non-chemo drug and have basically been in remission since. So, I have just begun my fourth year in remission (will find out Monday at treatment) and my fifth of fighting this disease. There must be others here who have a lot longer time in remission than I do.

    All the best,

    Jim
  • miss maggie
    miss maggie Member Posts: 929
    #3
    My story
    Hello,

    I am pasting a copy of a post I submitted this Tuesday. Maybe this will help you.
    I am not sure if this is a trial or the doctor's are using this chemo drug for
    indolent NHL. Benamustine is the drug. Here is my story. Maggie
    ----------------------------------------------------------------------------------------
    Hello to my dear family,

    The Pet CT scan taken July 30 is still negative for activity. I am still in remission.

    To those who are not familiar with my DX: In September 2009 I was rushed to the
    hospital with terrible pain. After a CT scan, it was noted my small bowel
    perforated. I was rushed into surgery. I was in ICU for one week, then 2 more weeks
    in the hospital. Total 3 weeks. Please note, I was feeling great with no symtoms
    what so ever. Nadda. Surgery resected the small bowel.

    A biopsy was taken. The perforation was caused by NHL. My dx was Marginal, stage 1,
    low grade, indolent B cell NHL. Sub type: Extranodal marginal zone B Cell NHL.
    I was treated only with Rituxan once weekly for 4 weeks in Dec 2009.

    I try and understand all I have been reading over the years since being DX. Once
    again I went over my concerns with my oncologist yesterday. Indolent, Low grade
    NHL can appear again or transform. She stated, if it appeaars again, it maight
    be 5 years or 10 years. Or never return.

    I will be seeing her in 6 months, Feb 2013. I suppose she will order extensive
    blood work then. She doubts there will be another Pet CT scan for awhile. For me,
    this frightens me. I know the radiation is high, but. Do I trust the extensive
    blood work? I know a Pet CT scan shows the true story. Also, how I feel day to day.

    Some of you are wondering. Be happy with the results and not worry about later on.
    I can't say I am worrying about tomorrow. I am thrilled with the results. I just
    can't get it out of my head what happened in Sept 2009. There was no warning.

    Maybe some of you feel as I do at times. I just had to share what is going on
    in my head. There is a thought that comes to mind. Once being DX with cancer,
    your life is never the same. Always waiting for the other shoe to drop.

    Love all of you my family. I will always be there for everyone. Love, hugs. Maggie
  • miss maggie
    miss maggie Member Posts: 929
    #4
    po18guy said:

    I'm IN my fifth year, if that counts...
    I developed a rare T-Cell lymphoma (PTCL-NOS) in probably April, 2008. After receiving a double regimen of eight dose-intensive chemo drugs, I was pronounced to be in remission as of the end of December, 2008. T-Cell lymphoma is known for relapses, and relapse it did - immediately. It was back in stage 1 by the end of February, 2009. I joined a clinical trial of an experimental non-chemo drug and have basically been in remission since. So, I have just begun my fourth year in remission (will find out Monday at treatment) and my fifth of fighting this disease. There must be others here who have a lot longer time in remission than I do.

    All the best,

    Jim

    Hi from Maggie
    Dear Jim,

    Thanks for your post and reminding me about your remission. Just wondering, why are you
    still getting treatment???

    I hope Monday the news you receive is positve. Please post as soon as you are able.

    Love and hugs. Maggie
  • miss maggie
    miss maggie Member Posts: 929
    #5
    po18guy said:

    I'm IN my fifth year, if that counts...
    I developed a rare T-Cell lymphoma (PTCL-NOS) in probably April, 2008. After receiving a double regimen of eight dose-intensive chemo drugs, I was pronounced to be in remission as of the end of December, 2008. T-Cell lymphoma is known for relapses, and relapse it did - immediately. It was back in stage 1 by the end of February, 2009. I joined a clinical trial of an experimental non-chemo drug and have basically been in remission since. So, I have just begun my fourth year in remission (will find out Monday at treatment) and my fifth of fighting this disease. There must be others here who have a lot longer time in remission than I do.

    All the best,

    Jim

    Hi from Maggie
    Dear Jim,

    Thanks for your post and reminding me about your remission. Just wondering, why are you
    still getting treatment???

    I hope Monday the news you receive is positve. Please post as soon as you are able.

    Love and hugs. Maggie
  • miss maggie
    miss maggie Member Posts: 929
    #6
    po18guy said:

    I'm IN my fifth year, if that counts...
    I developed a rare T-Cell lymphoma (PTCL-NOS) in probably April, 2008. After receiving a double regimen of eight dose-intensive chemo drugs, I was pronounced to be in remission as of the end of December, 2008. T-Cell lymphoma is known for relapses, and relapse it did - immediately. It was back in stage 1 by the end of February, 2009. I joined a clinical trial of an experimental non-chemo drug and have basically been in remission since. So, I have just begun my fourth year in remission (will find out Monday at treatment) and my fifth of fighting this disease. There must be others here who have a lot longer time in remission than I do.

    All the best,

    Jim

    Hi from Maggie
    Dear Jim,

    Thanks for your post and reminding me about your remission. Just wondering, why are you
    still getting treatment???

    I hope Monday the news you receive is positve. Please post as soon as you are able.

    Love and hugs. Maggie
  • po18guy
    po18guy Member Posts: 1,508 Member
    #7
    miss maggie said:

    Hi from Maggie
    Dear Jim,

    Thanks for your post and reminding me about your remission. Just wondering, why are you
    still getting treatment???

    I hope Monday the news you receive is positve. Please post as soon as you are able.

    Love and hugs. Maggie

    It's maintenance for an aggressive T-Cell NHL
    Maggie, I receive a monthly infusion of Istodax (Romidepsin) in an experimental maintenance program. This is almost paradoxical when one considers that there is no standard primary therapy for PTCL-NOS. The disease is highly resistant to the eight drugs that have been used against it during induction therapy, and it cannot be irradiated or surgically addressed. Yet, I continue to respond to Istodax 3 1/2 years into this study, and it is thought that the monthly infusion is a preventative, along the lines of allergy medication. I have dropped from three infusions per month down to two, and now to a single treatment. Doctor indicates that it may even drop to twice per year. At this point, no one knows. As to the long-term side effects of the drug, doctor smiled and said, "You'll tell us!" Since I am not a candidate for an allogenic SCT (no donor found), this drug has been an absolute Godsend. I could have my own blood stem cells, but relapses are common afterward. The latest research indicates that those who respond long term to novel therapies receive the benefit of a transplant, but without the risks. Since I am now four years late for my own funeral, I am delighted - to be anywhere!
  • boy34
    boy34 Member Posts: 20
    #8
    hope
    Hi,

    I dont post much here, but i do read alot of everyones stories. Im 43 years old and was diagnosed last August with Follicular Non-Hodgkins Lymphoma Stage 3 grade 1.5 B_Cell also only A symptoms!! My docs recomended the Watch and Wait approach to the disease. I had a very hard time to deal with non treatment. I had tumors in my neck and groin. They also told me theres no cure and it something thats just going to be cronic for the rest of my life.... again I had a very hard time dealing with. I changed some of my eating habits and tried some nutritional things and since them all of my tumors have gone away. At my 6 month pet scan, it confirmed that my tumors were gone. My doctor was amazed cause he's never seen that before. Having the right frame of mind and try living stress free plays a big roll in this disease...Im due for my year visit on tuesday and hoping for more good news.. Which I believe it will be, I feel good and theres nothing visible or to the touch!! I have to say its been a year now and its taking me that long to get over the fact that I have this stupid disease and wont let let it get the best of me... BTW I was diagnosed on my FIRST Wedding anniversary and I thank god I had a good woman on my side through the trials & tribulations!!

    Be well

    Chris
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #9
    boy34 said:

    hope
    Hi,

    I dont post much here, but i do read alot of everyones stories. Im 43 years old and was diagnosed last August with Follicular Non-Hodgkins Lymphoma Stage 3 grade 1.5 B_Cell also only A symptoms!! My docs recomended the Watch and Wait approach to the disease. I had a very hard time to deal with non treatment. I had tumors in my neck and groin. They also told me theres no cure and it something thats just going to be cronic for the rest of my life.... again I had a very hard time dealing with. I changed some of my eating habits and tried some nutritional things and since them all of my tumors have gone away. At my 6 month pet scan, it confirmed that my tumors were gone. My doctor was amazed cause he's never seen that before. Having the right frame of mind and try living stress free plays a big roll in this disease...Im due for my year visit on tuesday and hoping for more good news.. Which I believe it will be, I feel good and theres nothing visible or to the touch!! I have to say its been a year now and its taking me that long to get over the fact that I have this stupid disease and wont let let it get the best of me... BTW I was diagnosed on my FIRST Wedding anniversary and I thank god I had a good woman on my side through the trials & tribulations!!

    Be well

    Chris

    Wow...
    Hi Chris,
    Our cancer is almost identical, except I had tumors in my stomach as well as my neck and groin. There have been many times I have wondered if doing treatments so early after diagnosis was "really" the best way to go. Please let us know what you find out after your physical on Tuesday. Best wishes for continued success! Your story is so uplifting!
    Sue (FNHL-grade2-stage3-typeA-Dx 6/10-age 61)
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #10
    allmost60 said:

    Wow...
    Hi Chris,
    Our cancer is almost identical, except I had tumors in my stomach as well as my neck and groin. There have been many times I have wondered if doing treatments so early after diagnosis was "really" the best way to go. Please let us know what you find out after your physical on Tuesday. Best wishes for continued success! Your story is so uplifting!
    Sue (FNHL-grade2-stage3-typeA-Dx 6/10-age 61)

    Welcome
    Just wanted to say welcome to the group! There are all kinds of positive wishes and experiences here. Don't get me wrong, we all have our ups and downs with this disease...I am proof of that. I am on my 5th relapse.

    I hope daily for a cure for this disease. keep the faith!

    Take care,
    Beth
  • miss maggie
    miss maggie Member Posts: 929
    #11
    po18guy said:

    It's maintenance for an aggressive T-Cell NHL
    Maggie, I receive a monthly infusion of Istodax (Romidepsin) in an experimental maintenance program. This is almost paradoxical when one considers that there is no standard primary therapy for PTCL-NOS. The disease is highly resistant to the eight drugs that have been used against it during induction therapy, and it cannot be irradiated or surgically addressed. Yet, I continue to respond to Istodax 3 1/2 years into this study, and it is thought that the monthly infusion is a preventative, along the lines of allergy medication. I have dropped from three infusions per month down to two, and now to a single treatment. Doctor indicates that it may even drop to twice per year. At this point, no one knows. As to the long-term side effects of the drug, doctor smiled and said, "You'll tell us!" Since I am not a candidate for an allogenic SCT (no donor found), this drug has been an absolute Godsend. I could have my own blood stem cells, but relapses are common afterward. The latest research indicates that those who respond long term to novel therapies receive the benefit of a transplant, but without the risks. Since I am now four years late for my own funeral, I am delighted - to be anywhere!

    Miracle
    Hi,

    First let me say, I love your sense of humor. Especially about Albert Einstein in
    a prior post.

    I re-read your history a few minutes ago. Each paragaph I re-read really brought
    to light the hurdles you have gone through. The only thing that comes to mind, how
    fortunate and blessed you are to be treated by the right cancer center. To be at
    the right place and time when things becaume urgent.

    Our friend also cannot have allogenic SCT. I am going to paste your above
    post to her. I know her dx is differnet. Still it might be helpful. I would
    rather do this, then nothing. I am so worried about her. If I am correct,
    she will be using Rituxan as maintenance.

    Ae you receiving your maintenance at Fred Hutchinson, or Seattle Cancer Center?

    Hve a wonderful weekend. Miserable in New York. Hot and humid. Love Maggie
  • anliperez915
    anliperez915 Member Posts: 770
    #12
    boy34 said:

    hope
    Hi,

    I dont post much here, but i do read alot of everyones stories. Im 43 years old and was diagnosed last August with Follicular Non-Hodgkins Lymphoma Stage 3 grade 1.5 B_Cell also only A symptoms!! My docs recomended the Watch and Wait approach to the disease. I had a very hard time to deal with non treatment. I had tumors in my neck and groin. They also told me theres no cure and it something thats just going to be cronic for the rest of my life.... again I had a very hard time dealing with. I changed some of my eating habits and tried some nutritional things and since them all of my tumors have gone away. At my 6 month pet scan, it confirmed that my tumors were gone. My doctor was amazed cause he's never seen that before. Having the right frame of mind and try living stress free plays a big roll in this disease...Im due for my year visit on tuesday and hoping for more good news.. Which I believe it will be, I feel good and theres nothing visible or to the touch!! I have to say its been a year now and its taking me that long to get over the fact that I have this stupid disease and wont let let it get the best of me... BTW I was diagnosed on my FIRST Wedding anniversary and I thank god I had a good woman on my side through the trials & tribulations!!

    Be well

    Chris

    Hi Chris
    Hi Chris,
    It's really nice to hear from you and that you are doing very well! Very happy for you, I hope you continue to do well and please let us know the results from your tests. Take care and sending you positive thoughts

    Sincerely,
    Liz
  • rabdoog
    rabdoog Member Posts: 3
    #13
    po18guy said:

    I'm IN my fifth year, if that counts...
    I developed a rare T-Cell lymphoma (PTCL-NOS) in probably April, 2008. After receiving a double regimen of eight dose-intensive chemo drugs, I was pronounced to be in remission as of the end of December, 2008. T-Cell lymphoma is known for relapses, and relapse it did - immediately. It was back in stage 1 by the end of February, 2009. I joined a clinical trial of an experimental non-chemo drug and have basically been in remission since. So, I have just begun my fourth year in remission (will find out Monday at treatment) and my fifth of fighting this disease. There must be others here who have a lot longer time in remission than I do.

    All the best,

    Jim

    PTCL NOS

    Hi JIm...my name is Cathy.  I also was diagnosed in July of 2012 with same cancer.  I've gone thru CHOP, ICE and now on Romedepsin.

    They are looking to do a transplant, but I need a donor and not too thrilled about all the risks, etc. that come with that. 

    Are you atill doing the once a month treatment?  I have also changed my diet a lot and think that is helping.  Got a book by Bill Henderson

    Cancer Free..gentle healing with non toxic ..... can't remember.  He has a protocal I follow. 

    Thank you...Cathy

  • trustinJesus
    trustinJesus Member Posts: 59
    #14
    My dad had nhl diffused large b cell

    Hello, My dad was diagnosed in July of 2011 with diffuse large b cell NHL. He also had two places in his colon that needed to be addressed.  NHL was aggressive so we had to deal with that first. His symptoms were being Anemic.  Anyway, he had 6 treatments of rchop.  After 3 treatments they said it was gone.  He did 3 more treatments just to be safe.  He had a pet scan and they said it was back.  We were devastated.  Then he had 3 treatments of Rice.  This treatment you have to be hospitalized.  He did another pet scan and it still wasn't gone.  Next he did a stem cell transplant on his 58th birthday.  They told us it didn't work.  He had no cancer on the bottom half of his body, but he had it is his upper chest and close to his lungs.  This didn't make any sense to the doctors.  They ordered a tissue sample.  It came back that he has granuloma.  It shows up on a scan looking like cancer and we are told it came on from all the chemo treatments.  I know my dad had  NHL when he was first diagnosed, but we are not sure at what point he was cured.  The doctor that ordered the stem cell transplant doesn't want to talk about it, but his other doctors are saying he went through the SCT for nothing.  I am just happy he is in remission.  Praise the LORD!!!!!  I hope this gives you alot of hope.  He was stage 4 by the way.  He also had a portion of his colon removed after the stem cell transplant.

  • rabdoog
    rabdoog Member Posts: 3
    #15
    po18guy said:

    I'm IN my fifth year, if that counts...
    I developed a rare T-Cell lymphoma (PTCL-NOS) in probably April, 2008. After receiving a double regimen of eight dose-intensive chemo drugs, I was pronounced to be in remission as of the end of December, 2008. T-Cell lymphoma is known for relapses, and relapse it did - immediately. It was back in stage 1 by the end of February, 2009. I joined a clinical trial of an experimental non-chemo drug and have basically been in remission since. So, I have just begun my fourth year in remission (will find out Monday at treatment) and my fifth of fighting this disease. There must be others here who have a lot longer time in remission than I do.

    All the best,

    Jim

    T cell lymphoma

    Hi Jim...i am scheduled for stem cell collection on 8/30.  i've failed 2 chemotheraphy. CHOP and ICE.  my petscan is clear and also my bone marrow.

    did you have the option for a stem cell transplant?  what do you think.  i am using my own cells.  I go to Cancer Treatment Ctr of American in Zion, IL

    is there a way we could talk on the phone?  just have ???

    thanks, Cathy

  • Mary N.
    Mary N. Member Posts: 100
    #16
    trustinJesus said:

    My dad had nhl diffused large b cell

    Hello, My dad was diagnosed in July of 2011 with diffuse large b cell NHL. He also had two places in his colon that needed to be addressed.  NHL was aggressive so we had to deal with that first. His symptoms were being Anemic.  Anyway, he had 6 treatments of rchop.  After 3 treatments they said it was gone.  He did 3 more treatments just to be safe.  He had a pet scan and they said it was back.  We were devastated.  Then he had 3 treatments of Rice.  This treatment you have to be hospitalized.  He did another pet scan and it still wasn't gone.  Next he did a stem cell transplant on his 58th birthday.  They told us it didn't work.  He had no cancer on the bottom half of his body, but he had it is his upper chest and close to his lungs.  This didn't make any sense to the doctors.  They ordered a tissue sample.  It came back that he has granuloma.  It shows up on a scan looking like cancer and we are told it came on from all the chemo treatments.  I know my dad had  NHL when he was first diagnosed, but we are not sure at what point he was cured.  The doctor that ordered the stem cell transplant doesn't want to talk about it, but his other doctors are saying he went through the SCT for nothing.  I am just happy he is in remission.  Praise the LORD!!!!!  I hope this gives you alot of hope.  He was stage 4 by the way.  He also had a portion of his colon removed after the stem cell transplant.

    Hope

    Hi.  I was diagnosed Jan 2010 with diffuse large B cell non-Hodgkins in my brain.  My Onc. was not particularily promising about my living.  They gave me at most 1 year because of my age 70 and where the tumors were located.  I have only had high dose MTX and Rutixan.  After the first (horrible reaction) to the MTX and 6 weeks had passed they gave me another MRI and my tumors had shrunk by hald.  So we tried again and this time followed a different protocol with the sodium bicarb given earlier.  Long story short after 8 months one tumor gone other left a bit of scarring but has been inactive since sept 2010.  I am not "cured" or even in remission but I now can treat my NHL as a chronic disease.  I worked up until June and then decided that I didn't want to drive and hour plus to work.  I sometimes get tired but not sure its the chemo or being 73.  Life is good.  I get stronger each year.  I do go in for Rutixan each month and I think because of the dietary changes I've made, I have no side effects except a day of fatigue.  Every 4 months go into hospital for 4-5 days and get hig dose MTX and am tired for about a week.  Life is very manageable.  I love being with my grandchildren the youngest are 3 year old identical twin boys.  And I can keep up and don''t even have to nap when they do like I did when my kids were young.  We do live with a disease that may come back but we can live productive, happy and reasonably normal lives.  We have an advantage because we soon learn what is really important.  Blessings and prayers for a full and happy life.

    Mary

  • nhldaughter
    nhldaughter Member Posts: 67
    #17
    Mary N. said:

    Hope

    Hi.  I was diagnosed Jan 2010 with diffuse large B cell non-Hodgkins in my brain.  My Onc. was not particularily promising about my living.  They gave me at most 1 year because of my age 70 and where the tumors were located.  I have only had high dose MTX and Rutixan.  After the first (horrible reaction) to the MTX and 6 weeks had passed they gave me another MRI and my tumors had shrunk by hald.  So we tried again and this time followed a different protocol with the sodium bicarb given earlier.  Long story short after 8 months one tumor gone other left a bit of scarring but has been inactive since sept 2010.  I am not "cured" or even in remission but I now can treat my NHL as a chronic disease.  I worked up until June and then decided that I didn't want to drive and hour plus to work.  I sometimes get tired but not sure its the chemo or being 73.  Life is good.  I get stronger each year.  I do go in for Rutixan each month and I think because of the dietary changes I've made, I have no side effects except a day of fatigue.  Every 4 months go into hospital for 4-5 days and get hig dose MTX and am tired for about a week.  Life is very manageable.  I love being with my grandchildren the youngest are 3 year old identical twin boys.  And I can keep up and don''t even have to nap when they do like I did when my kids were young.  We do live with a disease that may come back but we can live productive, happy and reasonably normal lives.  We have an advantage because we soon learn what is really important.  Blessings and prayers for a full and happy life.

    Mary

    Wow

    Mary, it's so great to read your post! My mom's follicular just came back as aggressive large B cell. They gave her first round of epoch r and things are tough right now, 5 days after the 5 day hospitalized infusion and the world seems upside down With her constant pain attacks. She is 70. I don't know what MTX is, but she did get rituxen the first time (three years ago with bendamustine) and gets it now too. This post really gives me hope. Hers is enlarged lymphnodes in the underarm and umbellical area. Thank you, Mary. May you enjoy many many healthy years with the twins. 

  • Mary N.
    Mary N. Member Posts: 100
    #18
    nhldaughter said:

    Wow

    Mary, it's so great to read your post! My mom's follicular just came back as aggressive large B cell. They gave her first round of epoch r and things are tough right now, 5 days after the 5 day hospitalized infusion and the world seems upside down With her constant pain attacks. She is 70. I don't know what MTX is, but she did get rituxen the first time (three years ago with bendamustine) and gets it now too. This post really gives me hope. Hers is enlarged lymphnodes in the underarm and umbellical area. Thank you, Mary. May you enjoy many many healthy years with the twins. 

    Hi nhldaughter,

    I just got out of the hospital with my high dose methathrate (MTX).  I spent 4 days there and I continue on with the rescue drug Leucovoran for the next few days.  It seems kind of as tho aggressive large B cell should be impossible to treat but it actually responds fairly well  Best wishes for your mom!  I'm sorry she has to go through such a tough course of drugs and hope she is feeling better by now.

    Oh and while I was in the hospital my doctor actually said I was in" remission".  I asked what was next and he said we keep on doing the same things and hope you stay in remission..Blessings

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