bendamustin

does anyone have .expirence with bendamustin, if so please tell me how it made you feel and how was the fatigue. did it work good against the cancer. bleesings denise

Comments

  • allmost60
    allmost60 Member Posts: 3,178
    Search CSN content...
    Hi Denise,
    Up in the right hand corner of this page you will see.... Search CSN content. If you just type in Bendamustin you will see a whole host of people that have commented on this. I bet you will get most of your questions answered if you read through the various postings. Is this what your doctor has decided to do for treatment? Fran/cookingirl is one of our members that took Bendamustin...maybe she will check in and see your question.
    Best wishes Denise...Love, Sue (FNHL-2-3a-6/10)
  • scuttlebug11
    scuttlebug11 Member Posts: 175
    allmost60 said:

    Search CSN content...
    Hi Denise,
    Up in the right hand corner of this page you will see.... Search CSN content. If you just type in Bendamustin you will see a whole host of people that have commented on this. I bet you will get most of your questions answered if you read through the various postings. Is this what your doctor has decided to do for treatment? Fran/cookingirl is one of our members that took Bendamustin...maybe she will check in and see your question.
    Best wishes Denise...Love, Sue (FNHL-2-3a-6/10)

    sue thanks
    as always you are there, mabey you should volunteer anwsering phones for the american cancer, you would be good at it. love and blessings denise
  • miss maggie
    miss maggie Member Posts: 929
    bendamustin,
    Hi Denise,

    I am sure by now you checked the chemo drug Bendamustin. If I remember, this chemo was started
    in Germany.

    I listened to the last tele-conference, ASH. Last week. I was so surprised to hear they are now using this chemo drug for indolent lymphoma. In the event anyone missed this conference,
    they will have a transcript in a month or so. Cancer Care sponsored this conference.

    Always thinking of you. Love Maggie
  • onlytoday
    onlytoday Member Posts: 609 Member

    bendamustin,
    Hi Denise,

    I am sure by now you checked the chemo drug Bendamustin. If I remember, this chemo was started
    in Germany.

    I listened to the last tele-conference, ASH. Last week. I was so surprised to hear they are now using this chemo drug for indolent lymphoma. In the event anyone missed this conference,
    they will have a transcript in a month or so. Cancer Care sponsored this conference.

    Always thinking of you. Love Maggie

    Bendamustine, Treanda
    Hi Maggie , Denise, and all,

    My onc has mentioned it and it now seems likely that I will be getting Bendamustine in a couple of months. Seems they feel it can really throw Indolent Lymphoma into Remission- which is what I pray for.It's a milder chemo, no hair loss etc. (although I've read of hair thinning) But it's supposed to be pretty well tolerated. My Remission wasn't a remission at all and the beast is on the move in my lymph nodes (and probably my bone marrow-I'm anemic) so this is probably where I'm headed. They do like to use Rituxan with it and that will be tricky for me (had a bad allergic response of some sort to it) but I trust my doctors and will abide by what they say.

    I look forward to hearing that teleconference. How do you get the info of when they are, etc? Thanks Maggie. Knowledge is power!! :)

    Love ya,
    Donna
  • miss maggie
    miss maggie Member Posts: 929
    onlytoday said:

    Bendamustine, Treanda
    Hi Maggie , Denise, and all,

    My onc has mentioned it and it now seems likely that I will be getting Bendamustine in a couple of months. Seems they feel it can really throw Indolent Lymphoma into Remission- which is what I pray for.It's a milder chemo, no hair loss etc. (although I've read of hair thinning) But it's supposed to be pretty well tolerated. My Remission wasn't a remission at all and the beast is on the move in my lymph nodes (and probably my bone marrow-I'm anemic) so this is probably where I'm headed. They do like to use Rituxan with it and that will be tricky for me (had a bad allergic response of some sort to it) but I trust my doctors and will abide by what they say.

    I look forward to hearing that teleconference. How do you get the info of when they are, etc? Thanks Maggie. Knowledge is power!! :)

    Love ya,
    Donna

    Indolent Lymphoma
    Dear Donna,

    I signed up for all the conferences that Cancer Care and the Lymphoma network sponsers.
    I will certainly let you know when I am contacted the minutes are transcribed. Meanwhile,
    let me see if I can pull up the site for you.

    Love Maggie
  • miss maggie
    miss maggie Member Posts: 929
    onlytoday said:

    Bendamustine, Treanda
    Hi Maggie , Denise, and all,

    My onc has mentioned it and it now seems likely that I will be getting Bendamustine in a couple of months. Seems they feel it can really throw Indolent Lymphoma into Remission- which is what I pray for.It's a milder chemo, no hair loss etc. (although I've read of hair thinning) But it's supposed to be pretty well tolerated. My Remission wasn't a remission at all and the beast is on the move in my lymph nodes (and probably my bone marrow-I'm anemic) so this is probably where I'm headed. They do like to use Rituxan with it and that will be tricky for me (had a bad allergic response of some sort to it) but I trust my doctors and will abide by what they say.

    I look forward to hearing that teleconference. How do you get the info of when they are, etc? Thanks Maggie. Knowledge is power!! :)

    Love ya,
    Donna

    Info for Donna
    Hi Donna,

    Here is the info you requested. Each organization will either email
    you, or send you a mailing. Good luck. The information from the ASH tele-conference is not
    available yet. This is where they mention Bendamustine for indolent lymphoma. See below:
    For me, I usually copy the text, and save to my document file to read.

    www.lls.org > click patient education programs

    www.cancercare.org > connect education workshop > register for upcoming workshops >

    Be sure to register to both organizations. Even though you might be registered
    to find info, I believe you have to register separately for the tele-conferences and
    conferences held in NYC. Good luck.

    Love Maggie
  • onlytoday
    onlytoday Member Posts: 609 Member

    Info for Donna
    Hi Donna,

    Here is the info you requested. Each organization will either email
    you, or send you a mailing. Good luck. The information from the ASH tele-conference is not
    available yet. This is where they mention Bendamustine for indolent lymphoma. See below:
    For me, I usually copy the text, and save to my document file to read.

    www.lls.org > click patient education programs

    www.cancercare.org > connect education workshop > register for upcoming workshops >

    Be sure to register to both organizations. Even though you might be registered
    to find info, I believe you have to register separately for the tele-conferences and
    conferences held in NYC. Good luck.

    Love Maggie

    Teleconference
    Maggie,

    Thank you so much! I'm sure there is a wealth of information here.

    My docs are waiting to treat me until my intestinal problem is cleared. It turns out I have SIBO (small intestinal bacterial overgrowth). Only took 11 months to get a dx!! Anyway, they don't want to treat the lymphoma until that is completely gone- it's a pretty severe case and it may take a while to clear.

    Thanks again for the links!

    How are you doing??

    Love ya,
    Donna
  • miss maggie
    miss maggie Member Posts: 929
    onlytoday said:

    Teleconference
    Maggie,

    Thank you so much! I'm sure there is a wealth of information here.

    My docs are waiting to treat me until my intestinal problem is cleared. It turns out I have SIBO (small intestinal bacterial overgrowth). Only took 11 months to get a dx!! Anyway, they don't want to treat the lymphoma until that is completely gone- it's a pretty severe case and it may take a while to clear.

    Thanks again for the links!

    How are you doing??

    Love ya,
    Donna

    SIBO
    Dear Donna,

    I sometimes wonder how we get these health issues. You sound like a person that takes
    care of yourself. Did the doctor tell you how you got SIBO??? And how it can be avoided
    in the future??

    I am sure your doctor's must have you on heavy anti-biotics. Severe bacterial infections
    anywhere is rough. Eventually, they will get rid of the bacteria. It might be a good idea
    to start eating yogurt everyday. Especially, now that you are taking heavy doses of anti-biotics. I would also think, in the future, you should have yogurt each day with all it's
    benefits. If possible, plain organic yogurt with fruit each day. Stonyfield, if it's
    available where you live. Or any other organic yogurt, even vanalla yogurt for a better
    taste.

    Did you doctor test you for H Pilori virus?? My doctor had me tested awhile back. Negative.
    Not sure if what happened to me is intestial. Small bowel perforating caused by NHL. I was
    glad anyway I was tested for the H Pilori virus.

    I care about you Donna. You are like an old friend talking each day. I hope everything works
    out for the better and they can start treatment again.

    Take care. Maggie
  • caregiver1829
    caregiver1829 Member Posts: 51
    onlytoday said:

    Bendamustine, Treanda
    Hi Maggie , Denise, and all,

    My onc has mentioned it and it now seems likely that I will be getting Bendamustine in a couple of months. Seems they feel it can really throw Indolent Lymphoma into Remission- which is what I pray for.It's a milder chemo, no hair loss etc. (although I've read of hair thinning) But it's supposed to be pretty well tolerated. My Remission wasn't a remission at all and the beast is on the move in my lymph nodes (and probably my bone marrow-I'm anemic) so this is probably where I'm headed. They do like to use Rituxan with it and that will be tricky for me (had a bad allergic response of some sort to it) but I trust my doctors and will abide by what they say.

    I look forward to hearing that teleconference. How do you get the info of when they are, etc? Thanks Maggie. Knowledge is power!! :)

    Love ya,
    Donna

    information
    Donna; I found some pretty good videos posted on u-tube by cancer specialist on treanda/Bendamustine.. I think it sounds like the best new drug we have out there.. my wife has a relapse from follicular and big B nhl, we go Mar 1 for biopsy to see what's back and how much we have to fight.. NOt doing sct again.. thats rough!! food for thought.. caregiver,,, Jan..
  • caregiver1829
    caregiver1829 Member Posts: 51

    sue thanks
    as always you are there, mabey you should volunteer anwsering phones for the american cancer, you would be good at it. love and blessings denise

    treanda
    Sue
    chek out U-TUBE on line, theres some good videos from cancer specialist..I was really surprized at the effective rate.. and it s a patient friendlier chemo..
    we too are looking at using bendamustine or treanda for NHL we having a biopsy Mar 1 to see what we fighting and how much is there,
    We're not new to cancer just new to this site, I think this site is great..Its good thearpy to talk to others that are fighting the same battle but in they re own way.. My wife has been in battle since 08.. 2 time so called remission..
    GOOD LUCK!! caregiver,, Jan..
  • caregiver1829
    caregiver1829 Member Posts: 51

    Indolent Lymphoma
    Dear Donna,

    I signed up for all the conferences that Cancer Care and the Lymphoma network sponsers.
    I will certainly let you know when I am contacted the minutes are transcribed. Meanwhile,
    let me see if I can pull up the site for you.

    Love Maggie

    Nice
    Maggie;
    you sound like a super nice person,,, and so helpful to all.. that's what makes sites like this so theaphoputic.. KEEP UP THE GOOD WORK.. caregiver,, Jan..
  • onlytoday
    onlytoday Member Posts: 609 Member

    SIBO
    Dear Donna,

    I sometimes wonder how we get these health issues. You sound like a person that takes
    care of yourself. Did the doctor tell you how you got SIBO??? And how it can be avoided
    in the future??

    I am sure your doctor's must have you on heavy anti-biotics. Severe bacterial infections
    anywhere is rough. Eventually, they will get rid of the bacteria. It might be a good idea
    to start eating yogurt everyday. Especially, now that you are taking heavy doses of anti-biotics. I would also think, in the future, you should have yogurt each day with all it's
    benefits. If possible, plain organic yogurt with fruit each day. Stonyfield, if it's
    available where you live. Or any other organic yogurt, even vanalla yogurt for a better
    taste.

    Did you doctor test you for H Pilori virus?? My doctor had me tested awhile back. Negative.
    Not sure if what happened to me is intestial. Small bowel perforating caused by NHL. I was
    glad anyway I was tested for the H Pilori virus.

    I care about you Donna. You are like an old friend talking each day. I hope everything works
    out for the better and they can start treatment again.

    Take care. Maggie

    SIBO
    Hi Maggie,

    Way back in December of 2010 after chemo, I had two upper respiratory infections in a row, treated with antibiotics. From the antibiotics I got a terrible intestinal infection called C-Diff. It lasted 3 months and ironically is treated with yet another antibiotic. Well, I've never been right since even though the C-Diff test came back negative after the 3 months. So I've had diarrhea for 14 months. Finally!!! they did a simple breath test and Voila!! I have Small Intestine Bacterial Overgrowth. Cured by..... wait for it..... another antibiotic!!! Ridiculous isn't it!! ???? Until the breath test I had repeated endoscopes with biopsies and 3 capsule endoscopes!! They were very confident it was the NHL - but haven't been able to prove it and now with the SIBO test coming out positive I think they nailed it. I've had two weeks of high dose antibiotics and it didn't work so we're doing that again. Have to kill the bacteria- there should only be a little bit in the small bowel not this huge amount I have. I'm off dairy and sugar. Lactose and sugar feed the bacteria and keep it growing.
    This all happened from the antibiotics throwing off the ratio of good and bad bacteria. And this happens to the queen of yogurt- go figure!

    Oh the things we learn on this journey that we really never ever wanted or needed to know!! :)

    Hey the links you shared are great!! thank you so much!!


    How are you doing? Hope you are doing well- let me know.

    Love,
    Donna
  • miss maggie
    miss maggie Member Posts: 929
    onlytoday said:

    SIBO
    Hi Maggie,

    Way back in December of 2010 after chemo, I had two upper respiratory infections in a row, treated with antibiotics. From the antibiotics I got a terrible intestinal infection called C-Diff. It lasted 3 months and ironically is treated with yet another antibiotic. Well, I've never been right since even though the C-Diff test came back negative after the 3 months. So I've had diarrhea for 14 months. Finally!!! they did a simple breath test and Voila!! I have Small Intestine Bacterial Overgrowth. Cured by..... wait for it..... another antibiotic!!! Ridiculous isn't it!! ???? Until the breath test I had repeated endoscopes with biopsies and 3 capsule endoscopes!! They were very confident it was the NHL - but haven't been able to prove it and now with the SIBO test coming out positive I think they nailed it. I've had two weeks of high dose antibiotics and it didn't work so we're doing that again. Have to kill the bacteria- there should only be a little bit in the small bowel not this huge amount I have. I'm off dairy and sugar. Lactose and sugar feed the bacteria and keep it growing.
    This all happened from the antibiotics throwing off the ratio of good and bad bacteria. And this happens to the queen of yogurt- go figure!

    Oh the things we learn on this journey that we really never ever wanted or needed to know!! :)

    Hey the links you shared are great!! thank you so much!!


    How are you doing? Hope you are doing well- let me know.

    Love,
    Donna

    OK NOW
    Dear Donna,

    I did respond to your other post. Hopefully you will see my post. Your question, How am
    I doing? I feel fine and have lots of energy again. But, as I posted in a previous post,
    I was fine before everything changed. I hate to sound negative. forgive me. Still, I enjoy
    each day I feel good.

    Love Maggie
  • ecurb12
    ecurb12 Member Posts: 2
    Bendamustin
    Hi Denise,

    I'm new to this board and do not know if someone already responded. I did chemo with Bendamustin (w/ Rituxan) in 2010. I did CHOP-R in 2007. I found the Bendamustin did not impact my white blood cells like the CHOP did, but I experienced more nausea and fatigue. The anti-nausea meds usually worked. I hope your experience is a good one. My last PET scan was cancer free! So it was worth it.

    I wish you all the best. Your in my thoughts and prayers.

    Bruce
  • COBRA666
    COBRA666 Member Posts: 2,401
    ecurb12 said:

    Bendamustin
    Hi Denise,

    I'm new to this board and do not know if someone already responded. I did chemo with Bendamustin (w/ Rituxan) in 2010. I did CHOP-R in 2007. I found the Bendamustin did not impact my white blood cells like the CHOP did, but I experienced more nausea and fatigue. The anti-nausea meds usually worked. I hope your experience is a good one. My last PET scan was cancer free! So it was worth it.

    I wish you all the best. Your in my thoughts and prayers.

    Bruce

    NED
    Bruce,
    That is always great news to hear. John(FNHL-4A-1-5/10)
  • allmost60
    allmost60 Member Posts: 3,178
    ecurb12 said:

    Bendamustin
    Hi Denise,

    I'm new to this board and do not know if someone already responded. I did chemo with Bendamustin (w/ Rituxan) in 2010. I did CHOP-R in 2007. I found the Bendamustin did not impact my white blood cells like the CHOP did, but I experienced more nausea and fatigue. The anti-nausea meds usually worked. I hope your experience is a good one. My last PET scan was cancer free! So it was worth it.

    I wish you all the best. Your in my thoughts and prayers.

    Bruce

    Yeah!
    Hi Bruce,
    Cancer free...thats music to our ears! Congratulations!! My wish is for all of us to reach that goal as soon as possible! Best wishes for continued success...Sue
    (FNHL-2-3A-6/10)
  • shelbymae
    shelbymae Member Posts: 8
    allmost60 said:

    Yeah!
    Hi Bruce,
    Cancer free...thats music to our ears! Congratulations!! My wish is for all of us to reach that goal as soon as possible! Best wishes for continued success...Sue
    (FNHL-2-3A-6/10)

    free magazine
    I just wanted to pass on some info or maybe everyone already is aware of this free magazine. I am referring to the CURE magazine. It is free and they also post on email. A cancer survivor turned me onto the magazine. I am enclosing their email address just incase anyone would be interested to receive the magazine. It is filled with info on treatments/research/financial help....etc. The magazine is free to survivors/caregivers/patients and healthcare professionals.
    You may suscribe over phone 1-800-210-2873 or online: curetoday.com/subscribe

    I hope this will help someone.
  • allmost60
    allmost60 Member Posts: 3,178
    shelbymae said:

    free magazine
    I just wanted to pass on some info or maybe everyone already is aware of this free magazine. I am referring to the CURE magazine. It is free and they also post on email. A cancer survivor turned me onto the magazine. I am enclosing their email address just incase anyone would be interested to receive the magazine. It is filled with info on treatments/research/financial help....etc. The magazine is free to survivors/caregivers/patients and healthcare professionals.
    You may suscribe over phone 1-800-210-2873 or online: curetoday.com/subscribe

    I hope this will help someone.

    Good magazine
    Hi Shelbymae,
    I offered this information to the group once before and I agree with you, it's a great magazine. It's one more tool in finding out as much information as possible about our cancer. Thanks for posting this to the group. Best wishes...Sue (FNHL-2-3A-6/10)
  • anliperez915
    anliperez915 Member Posts: 770

    treanda
    Sue
    chek out U-TUBE on line, theres some good videos from cancer specialist..I was really surprized at the effective rate.. and it s a patient friendlier chemo..
    we too are looking at using bendamustine or treanda for NHL we having a biopsy Mar 1 to see what we fighting and how much is there,
    We're not new to cancer just new to this site, I think this site is great..Its good thearpy to talk to others that are fighting the same battle but in they re own way.. My wife has been in battle since 08.. 2 time so called remission..
    GOOD LUCK!! caregiver,, Jan..

    Hi Jan
    Hi Jan, I was wondering how the biopsy for your wife went? Have you gotten the results back? I was also wondering about the drug treatment treanda with rituxan is it used for all types of lymphomas or only certain types. Well take care of yourself and best wishes to you and your wife.

    Sincerely,
    Liz