Has anyone done Bendamustine - Rituxan Chemo for NHL?

cookingirl
cookingirl Member Posts: 183 Member
Haven't seen this chemo mentioned on the site - it's one being considered for my stage 4, Follicular, B cell cancer that didn't go into Remission on CVP-R. Just wondering if anyone has used it and was it successful? Fran
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Comments

  • 711tom
    711tom Member Posts: 44
    hey cookingirl
    Hi, yes I did Treanda (Bendamustine)-R in a clinical trial in 2005 after a good long remission from CHOP in 93. It was way easier than traditional chemo (CHOP being my only reference at that time). No nausea, hair loss, maybe a little fatigue but not bad. I did lose a fair amount of weight but never got sick from the chemo. My Dad was dying in 05 and I think that caused the weight loss more than anything else. While I did not get a clinical complete remission, as i had one stubborn tumor that was just outside of normal range, I did get a terrific response that lasted three years. Best of luck to you and I would recommend it. As with everyone on this borad I will add you to my prayers! Let me know how it goes.

    DX 1993, stage 4 FNHL

    George
  • cookingirl
    cookingirl Member Posts: 183 Member
    711tom said:

    hey cookingirl
    Hi, yes I did Treanda (Bendamustine)-R in a clinical trial in 2005 after a good long remission from CHOP in 93. It was way easier than traditional chemo (CHOP being my only reference at that time). No nausea, hair loss, maybe a little fatigue but not bad. I did lose a fair amount of weight but never got sick from the chemo. My Dad was dying in 05 and I think that caused the weight loss more than anything else. While I did not get a clinical complete remission, as i had one stubborn tumor that was just outside of normal range, I did get a terrific response that lasted three years. Best of luck to you and I would recommend it. As with everyone on this borad I will add you to my prayers! Let me know how it goes.

    DX 1993, stage 4 FNHL

    George

    Bendamustine-R
    Hi George and Maggie - thanks for all the great info! I'll definately check out Cornell site. George - wonderful hearing from someone who's actually done this chemo. You mentioned a tumor outside the range - that's my problem too. It's embedded under the small intestine, interwined with the blood vessels and inoperable. Did drop with CVP from 12 cm. (size of a large grapefruit, they told me) to 8.5, a regular size grapefruit. Had hoped to avoid chemo and do RIT (Radioimmuotherapy) but found out the tumor must be under 3 cm. in order to have that treatment. They may consider it for keeping me in remission, but only chemo can get it down to that number. Happy to hear Bendamustine isn't as bad as CHOP but that one isn't ruled out yet for me. Know it will be in the mix at some time. Have you done any treatment since 2005? Hope not - that means a good long remission, if not! Fran
  • miss maggie
    miss maggie Member Posts: 929
    Bendamustine
    Hello Fran,
    I went to a seminar not too long ago. The above was mentioned. I believe it was developed in Germany. Dr. John Leonard from Cornell Medical Center in NYC was the speaker. (The University Hospital of Columbia and Cornell) Cornell and Columbia Presbyterian Hospital are one of the same. One of the top hospitals in the US. Try going to the site Cornell Medical Center NYC, and do research on Dr. Leonard or Bendamustine.

    Good luck Maggie - indolent, marginal, stage 1, low grade B Cell of the small bowel. Sub type "extranodal marginal zone B Cell Lymphoma -DX 09/09
  • 711tom
    711tom Member Posts: 44

    Bendamustine-R
    Hi George and Maggie - thanks for all the great info! I'll definately check out Cornell site. George - wonderful hearing from someone who's actually done this chemo. You mentioned a tumor outside the range - that's my problem too. It's embedded under the small intestine, interwined with the blood vessels and inoperable. Did drop with CVP from 12 cm. (size of a large grapefruit, they told me) to 8.5, a regular size grapefruit. Had hoped to avoid chemo and do RIT (Radioimmuotherapy) but found out the tumor must be under 3 cm. in order to have that treatment. They may consider it for keeping me in remission, but only chemo can get it down to that number. Happy to hear Bendamustine isn't as bad as CHOP but that one isn't ruled out yet for me. Know it will be in the mix at some time. Have you done any treatment since 2005? Hope not - that means a good long remission, if not! Fran

    bendamustine-R
    Hi, hope you are felling well. It is funny how different ONC's opinions are out there. I just did RIT two weeks ago and wanted to do Bexxar based on info i read at Betsy DE Parry's site. I actually spoke with her on the phone, she is awesome and a wealth of knowledge. I had multiple tumors, but two I could see and feel that were larger than 5 CM and for that reason they said (theoretically) to do Zevalin because it penetrates the beta particle further so is better for bulky disease. it made sense to me as it has twice the "length" of Bexxar, the down side is it is a little harder on everything else due to its length as it affects more surrounding normal tissue. Today is the two week anniversary of the "shot" and my largest tumor in my right groin is almost gone (size of an aspirin) and the one in my neck is down by over 90%, it's incredible, but my point is that both of these were outside the 3cm range. i did the Zevalin as a single therapy and i am so hopeful of having a response and remission similar to Betsy's, she is 8 years in CR!! I don't have first hand experience in how this will play out but I did a ton of research prior to deciding on RIT. I would suggest you revisit this RIT at some point in your treatment decision. Regardless, know that i am thinking about you and will add you to my prayers.

    George
  • cookingirl
    cookingirl Member Posts: 183 Member
    711tom said:

    bendamustine-R
    Hi, hope you are felling well. It is funny how different ONC's opinions are out there. I just did RIT two weeks ago and wanted to do Bexxar based on info i read at Betsy DE Parry's site. I actually spoke with her on the phone, she is awesome and a wealth of knowledge. I had multiple tumors, but two I could see and feel that were larger than 5 CM and for that reason they said (theoretically) to do Zevalin because it penetrates the beta particle further so is better for bulky disease. it made sense to me as it has twice the "length" of Bexxar, the down side is it is a little harder on everything else due to its length as it affects more surrounding normal tissue. Today is the two week anniversary of the "shot" and my largest tumor in my right groin is almost gone (size of an aspirin) and the one in my neck is down by over 90%, it's incredible, but my point is that both of these were outside the 3cm range. i did the Zevalin as a single therapy and i am so hopeful of having a response and remission similar to Betsy's, she is 8 years in CR!! I don't have first hand experience in how this will play out but I did a ton of research prior to deciding on RIT. I would suggest you revisit this RIT at some point in your treatment decision. Regardless, know that i am thinking about you and will add you to my prayers.

    George

    Bendamustine
    HI George - isn't Betsy just wonderful? My hubby found her book which I ordered and have now read 3 times - The Roller Coaster Chronicles. Highly recommend it to anyone with our NHL. I emailed her, she wrote back and we've been corresponding since. She asked if she could call us before we went to Moffitt - she did and we chatted for an hour - what a wealth of info on our disease she is! I feel she knows as much as many Doctors about the subject. I'm thrilled for her 8 year remission - I used her joke with my local Oncologist I thought was great - "If cancer is a journey, I want a new travel agent!" He has a great sense of humor and howled - I told him who said it and gave her credit. It's VERY interesting to see what a remission you've had in just two weeks with Zevalin - amazing! Dr. Sprawls called this afternoon to say Moffitt Cancer Center in Tampa had decided to try Bendamustine with Rituxan chemo on me and we start next week. I'm going to tell him of your success but for some reason, they feel only chemo will get the large tumor down before trying RIT. Thank you so much for your info and I'll be praying for you too and wish you many years of remission from this! Keep me posted - Fran
  • 711tom
    711tom Member Posts: 44

    Bendamustine
    HI George - isn't Betsy just wonderful? My hubby found her book which I ordered and have now read 3 times - The Roller Coaster Chronicles. Highly recommend it to anyone with our NHL. I emailed her, she wrote back and we've been corresponding since. She asked if she could call us before we went to Moffitt - she did and we chatted for an hour - what a wealth of info on our disease she is! I feel she knows as much as many Doctors about the subject. I'm thrilled for her 8 year remission - I used her joke with my local Oncologist I thought was great - "If cancer is a journey, I want a new travel agent!" He has a great sense of humor and howled - I told him who said it and gave her credit. It's VERY interesting to see what a remission you've had in just two weeks with Zevalin - amazing! Dr. Sprawls called this afternoon to say Moffitt Cancer Center in Tampa had decided to try Bendamustine with Rituxan chemo on me and we start next week. I'm going to tell him of your success but for some reason, they feel only chemo will get the large tumor down before trying RIT. Thank you so much for your info and I'll be praying for you too and wish you many years of remission from this! Keep me posted - Fran

    Bendamustine
    She is awesome!! You know my ONC wanted me to have a SCT now primarily because I am fairly young (52) and healthy (except for cancer) and could tolerate it well and hopefully get a long durable remission. I was pretty adamant about trying RIT first after the research i did and info from Betsy and others, so maybe I kind of forced his hand. I am not a DR so I am sure they know best but certainly speak to them about what you have read regarding RIT. I think you will do fine with B as I found it "easy" and I use that term loosely, compared to CHOP. I did get neuropathy (sp)with it but it went away after treatment. Best of Luck Fran and stay strong, let me know how it goes. You and all on this board are in my nightly prayers.
  • cookingirl
    cookingirl Member Posts: 183 Member
    711tom said:

    Bendamustine
    She is awesome!! You know my ONC wanted me to have a SCT now primarily because I am fairly young (52) and healthy (except for cancer) and could tolerate it well and hopefully get a long durable remission. I was pretty adamant about trying RIT first after the research i did and info from Betsy and others, so maybe I kind of forced his hand. I am not a DR so I am sure they know best but certainly speak to them about what you have read regarding RIT. I think you will do fine with B as I found it "easy" and I use that term loosely, compared to CHOP. I did get neuropathy (sp)with it but it went away after treatment. Best of Luck Fran and stay strong, let me know how it goes. You and all on this board are in my nightly prayers.

    Has anyone done Bendamustine - Rituxan Chemo for NHL?
    Got our plan today - my Oncologist called it Rhythm & Blues (for Rituxan and Bendamustine). Will take 4 prescription premeds the night before chemo and morning of - always two consecutive days - next Tues. and Wed. being my first. Ugh - dread the low white cell counts and staying home again but it must be done. Read today on a site that R-B actually has a higher remission rate than CHOP does, so praying that's true. Will let you know how it goes next week. Have a great weekend! Fran
  • allmost60
    allmost60 Member Posts: 3,178 Member

    Has anyone done Bendamustine - Rituxan Chemo for NHL?
    Got our plan today - my Oncologist called it Rhythm & Blues (for Rituxan and Bendamustine). Will take 4 prescription premeds the night before chemo and morning of - always two consecutive days - next Tues. and Wed. being my first. Ugh - dread the low white cell counts and staying home again but it must be done. Read today on a site that R-B actually has a higher remission rate than CHOP does, so praying that's true. Will let you know how it goes next week. Have a great weekend! Fran

    A plan...
    Good luck Fran...I'll be thinking good thoughts for you. Glad you finally have a solid plan of attack! Keep us posted...Love,Sue..(FNHL-2-3A-6/10)
  • Deb S
    Deb S Member Posts: 11

    Has anyone done Bendamustine - Rituxan Chemo for NHL?
    Got our plan today - my Oncologist called it Rhythm & Blues (for Rituxan and Bendamustine). Will take 4 prescription premeds the night before chemo and morning of - always two consecutive days - next Tues. and Wed. being my first. Ugh - dread the low white cell counts and staying home again but it must be done. Read today on a site that R-B actually has a higher remission rate than CHOP does, so praying that's true. Will let you know how it goes next week. Have a great weekend! Fran

    B-R questions
    Hi Fran,
    Hope this note finds you well. Just wondering how you were doing with the Rituxan and Bendamustine. My doctor wants me to consider this as a future treatment. I have FNHL grade 1, stage 3a. I've seen two oncologists for first and second opinions and they don't think there's any rush, so I plan to start around May. Any advice?

    Thanks, Deb
  • cookingirl
    cookingirl Member Posts: 183 Member
    Deb S said:

    B-R questions
    Hi Fran,
    Hope this note finds you well. Just wondering how you were doing with the Rituxan and Bendamustine. My doctor wants me to consider this as a future treatment. I have FNHL grade 1, stage 3a. I've seen two oncologists for first and second opinions and they don't think there's any rush, so I plan to start around May. Any advice?

    Thanks, Deb

    B-R questions
    Hi Deb - glad I saw your post - there aren't many of us out there on Treanda/Bendamustine (at least who have written in). I've had 3 months now and 5 to go. You probably know it's a 2 day chemo - 7 hours the first, 4 to 5 the second. The first treatment in November I lost 14 lbs. and was completely knocked out for 10 days. It hasn't improved with me each time, and I understand cumulative effects are happening and it probably won't. I had my 3rd ones Jan. 10 & 11 - on the 20th day (today) I am still nauseaus, dizzy and have severe diahrrea. Usually by this week I'm ok to leave the house, so had fun things planned each day. I only made it to one of them. This seems to be the extreme, so it probably won't happen to you. My Oncologist is treating one other patient besides me and I met her quite by accident in one of the other 5 offices my large practice has. She just finished her 6th treatment and reached full remission (even though a few small tumors remain, they are not active and no further treatment needed for her NHL). She's very tired a month later but I understand from many chemos, you don't get your full energy back for 6 months. I go Monday for my first CT scan with this one to see what shrinkage occured. We get results on Friday, Feb. 4 so I will post after that. Please feel free to ask me any questions when you get started and don't let what I said discourage you. From all the reading we've done, B-R has about a 74% remission succeess, compared to mid 50's for CHOP. If that's true, it will be so worth it! Good luck and keep in touch - Fran
  • merrywinner
    merrywinner Member Posts: 626 Member

    B-R questions
    Hi Deb - glad I saw your post - there aren't many of us out there on Treanda/Bendamustine (at least who have written in). I've had 3 months now and 5 to go. You probably know it's a 2 day chemo - 7 hours the first, 4 to 5 the second. The first treatment in November I lost 14 lbs. and was completely knocked out for 10 days. It hasn't improved with me each time, and I understand cumulative effects are happening and it probably won't. I had my 3rd ones Jan. 10 & 11 - on the 20th day (today) I am still nauseaus, dizzy and have severe diahrrea. Usually by this week I'm ok to leave the house, so had fun things planned each day. I only made it to one of them. This seems to be the extreme, so it probably won't happen to you. My Oncologist is treating one other patient besides me and I met her quite by accident in one of the other 5 offices my large practice has. She just finished her 6th treatment and reached full remission (even though a few small tumors remain, they are not active and no further treatment needed for her NHL). She's very tired a month later but I understand from many chemos, you don't get your full energy back for 6 months. I go Monday for my first CT scan with this one to see what shrinkage occured. We get results on Friday, Feb. 4 so I will post after that. Please feel free to ask me any questions when you get started and don't let what I said discourage you. From all the reading we've done, B-R has about a 74% remission succeess, compared to mid 50's for CHOP. If that's true, it will be so worth it! Good luck and keep in touch - Fran

    Hi Fran
    Just wanted to pop in and say hello, hang in there and good luck! From my limited research on Bendamustine I thought I had found the studies showed it to be generally better tolerated by patients as compared to R CHOP? At least the info I read had that as the reason for using it. You poor thing. I am sorry you are so sick with this. Always a price tag to being a pioneer but your experiences will help others. Mary
  • cookingirl
    cookingirl Member Posts: 183 Member

    Hi Fran
    Just wanted to pop in and say hello, hang in there and good luck! From my limited research on Bendamustine I thought I had found the studies showed it to be generally better tolerated by patients as compared to R CHOP? At least the info I read had that as the reason for using it. You poor thing. I am sorry you are so sick with this. Always a price tag to being a pioneer but your experiences will help others. Mary

    Has anyone done Bendamustine - Rituxan
    Hi Mary - you're exactly right - everything we read says the same! CHOP is usually a harder to tolerate treatment - if that's true, I sure dread when my time comes for that one. I've heard from just 4 who used B-R and other than being fatigued, none of them have had the other 3 bad side effects I have. Can barely drag myself out of bed to go for the 3xweekly Neupogen shots required to raise my very low white cell counts the two weeks following chemo. They also have side effects for me, so perhaps some of my sickness is coming from them, not all from the chemo. No real way of knowing.

    Thanks for caring and so happy again for you! Fran
  • merrywinner
    merrywinner Member Posts: 626 Member

    Has anyone done Bendamustine - Rituxan
    Hi Mary - you're exactly right - everything we read says the same! CHOP is usually a harder to tolerate treatment - if that's true, I sure dread when my time comes for that one. I've heard from just 4 who used B-R and other than being fatigued, none of them have had the other 3 bad side effects I have. Can barely drag myself out of bed to go for the 3xweekly Neupogen shots required to raise my very low white cell counts the two weeks following chemo. They also have side effects for me, so perhaps some of my sickness is coming from them, not all from the chemo. No real way of knowing.

    Thanks for caring and so happy again for you! Fran

    LOL
    Feel like we're playing checkers with these crossing posts. Got it though. Unexpected or unusual side effects happen. I know they did for me at times, but in no way should be used as a predictor of outcome. It doesn't mean a thing with regards to success. I am just sorry it's harder for you. Feel better and soon it will be all over. Mary
  • JoanieP
    JoanieP Member Posts: 573

    B-R questions
    Hi Deb - glad I saw your post - there aren't many of us out there on Treanda/Bendamustine (at least who have written in). I've had 3 months now and 5 to go. You probably know it's a 2 day chemo - 7 hours the first, 4 to 5 the second. The first treatment in November I lost 14 lbs. and was completely knocked out for 10 days. It hasn't improved with me each time, and I understand cumulative effects are happening and it probably won't. I had my 3rd ones Jan. 10 & 11 - on the 20th day (today) I am still nauseaus, dizzy and have severe diahrrea. Usually by this week I'm ok to leave the house, so had fun things planned each day. I only made it to one of them. This seems to be the extreme, so it probably won't happen to you. My Oncologist is treating one other patient besides me and I met her quite by accident in one of the other 5 offices my large practice has. She just finished her 6th treatment and reached full remission (even though a few small tumors remain, they are not active and no further treatment needed for her NHL). She's very tired a month later but I understand from many chemos, you don't get your full energy back for 6 months. I go Monday for my first CT scan with this one to see what shrinkage occured. We get results on Friday, Feb. 4 so I will post after that. Please feel free to ask me any questions when you get started and don't let what I said discourage you. From all the reading we've done, B-R has about a 74% remission succeess, compared to mid 50's for CHOP. If that's true, it will be so worth it! Good luck and keep in touch - Fran

    Fran
    I pray for you every morning and now I'm praying for great results on Feb. 4th. You really have been through a terrible ordeal. I had CHOP and really did o.k with it. I lost my hair but I never got sick, or dizzy. I got weak after the 5th and 6th chemo. I'll be waiting for the good news!!!!
  • Deb S
    Deb S Member Posts: 11

    B-R questions
    Hi Deb - glad I saw your post - there aren't many of us out there on Treanda/Bendamustine (at least who have written in). I've had 3 months now and 5 to go. You probably know it's a 2 day chemo - 7 hours the first, 4 to 5 the second. The first treatment in November I lost 14 lbs. and was completely knocked out for 10 days. It hasn't improved with me each time, and I understand cumulative effects are happening and it probably won't. I had my 3rd ones Jan. 10 & 11 - on the 20th day (today) I am still nauseaus, dizzy and have severe diahrrea. Usually by this week I'm ok to leave the house, so had fun things planned each day. I only made it to one of them. This seems to be the extreme, so it probably won't happen to you. My Oncologist is treating one other patient besides me and I met her quite by accident in one of the other 5 offices my large practice has. She just finished her 6th treatment and reached full remission (even though a few small tumors remain, they are not active and no further treatment needed for her NHL). She's very tired a month later but I understand from many chemos, you don't get your full energy back for 6 months. I go Monday for my first CT scan with this one to see what shrinkage occured. We get results on Friday, Feb. 4 so I will post after that. Please feel free to ask me any questions when you get started and don't let what I said discourage you. From all the reading we've done, B-R has about a 74% remission succeess, compared to mid 50's for CHOP. If that's true, it will be so worth it! Good luck and keep in touch - Fran

    B-R
    Hi Fran,

    I'm so sorry you've had such a rough time with the B-R. One of my two oncologists (I haven't picked between them yet as my dx is so new) has told me that this treatment is very well tolerated. Doc #1 has said the B-R treatment is for six months, or I could watchful-wait. Are there different regimes based on symptoms, or is this doctor discretion? Doc #2 wants to watchful/wait or do Rituxin alone, and he is a Lymphoma specialist. You are so upbeat, and I'm just not there yet. My dx was just 1/11/11. I wish you the best, with hopefully some abating of your side effects. Hopefully your doc is helping you out with them. Do they use Zofran? I am a recovery room nurse, and it seems to work wonders post-op for our patients.

    Hugs and smiles, Deb
  • cookingirl
    cookingirl Member Posts: 183 Member
    Deb S said:

    B-R
    Hi Fran,

    I'm so sorry you've had such a rough time with the B-R. One of my two oncologists (I haven't picked between them yet as my dx is so new) has told me that this treatment is very well tolerated. Doc #1 has said the B-R treatment is for six months, or I could watchful-wait. Are there different regimes based on symptoms, or is this doctor discretion? Doc #2 wants to watchful/wait or do Rituxin alone, and he is a Lymphoma specialist. You are so upbeat, and I'm just not there yet. My dx was just 1/11/11. I wish you the best, with hopefully some abating of your side effects. Hopefully your doc is helping you out with them. Do they use Zofran? I am a recovery room nurse, and it seems to work wonders post-op for our patients.

    Hugs and smiles, Deb

    B-R
    Hi Mary, Joanie and Deb - so great to hear from each of you! Thanks for your morning prayers, Joanie - I WILL call you again when I feel like talking!

    Deb - what was your diagnosis? Mine is Follicular, stage 4, grade 2, Indolent NHL. Diagnosed 9/09 and I was in "watchful wating" for 9 months. Tumors found on CT scan, several smaller ones removed but the big one at that time was just 3 cm and I had no symtoms. Did nothing from Sept. - May when it suddenly grew from Jan. to then from 3 to 12 cm. and then chemo began immediately. CVP-R dropped it to 8.5 cm last summer, but not enough reduction. So we're trying this B-R and we'll see! My oncologist practice is affiliated with Moffitt Cancer Center in Tampa and they've sent me over 4 times for various reasons - said I was a "complicated" patient! Head of the Lymphoma research Dept. there, Dr. Sotomayer, highly regarded worldwide for his research on this type of cancer, recommended the B-R for me and my local Dr. agreed and is administering it just 5 minutes from my home rather than the 3 hour drive. I was just his second patient on it, so he's not as familiar with it as others he's done for years. Will be anxious to see what you decide - keep us posted. I have not used Zofran - is that for nausea? I will mention it to him next week - thanks so much. Fran
  • cookingirl
    cookingirl Member Posts: 183 Member

    B-R
    Hi Mary, Joanie and Deb - so great to hear from each of you! Thanks for your morning prayers, Joanie - I WILL call you again when I feel like talking!

    Deb - what was your diagnosis? Mine is Follicular, stage 4, grade 2, Indolent NHL. Diagnosed 9/09 and I was in "watchful wating" for 9 months. Tumors found on CT scan, several smaller ones removed but the big one at that time was just 3 cm and I had no symtoms. Did nothing from Sept. - May when it suddenly grew from Jan. to then from 3 to 12 cm. and then chemo began immediately. CVP-R dropped it to 8.5 cm last summer, but not enough reduction. So we're trying this B-R and we'll see! My oncologist practice is affiliated with Moffitt Cancer Center in Tampa and they've sent me over 4 times for various reasons - said I was a "complicated" patient! Head of the Lymphoma research Dept. there, Dr. Sotomayer, highly regarded worldwide for his research on this type of cancer, recommended the B-R for me and my local Dr. agreed and is administering it just 5 minutes from my home rather than the 3 hour drive. I was just his second patient on it, so he's not as familiar with it as others he's done for years. Will be anxious to see what you decide - keep us posted. I have not used Zofran - is that for nausea? I will mention it to him next week - thanks so much. Fran

    Chemo brain
    Sorry - Deb - chalk it up to chemo brain ( a real medical issue - you'll find out!) that I didn't remember your type of NHL - saw it after I asked in an earlier post - ignore, please! Fran
  • Deb S
    Deb S Member Posts: 11

    B-R
    Hi Mary, Joanie and Deb - so great to hear from each of you! Thanks for your morning prayers, Joanie - I WILL call you again when I feel like talking!

    Deb - what was your diagnosis? Mine is Follicular, stage 4, grade 2, Indolent NHL. Diagnosed 9/09 and I was in "watchful wating" for 9 months. Tumors found on CT scan, several smaller ones removed but the big one at that time was just 3 cm and I had no symtoms. Did nothing from Sept. - May when it suddenly grew from Jan. to then from 3 to 12 cm. and then chemo began immediately. CVP-R dropped it to 8.5 cm last summer, but not enough reduction. So we're trying this B-R and we'll see! My oncologist practice is affiliated with Moffitt Cancer Center in Tampa and they've sent me over 4 times for various reasons - said I was a "complicated" patient! Head of the Lymphoma research Dept. there, Dr. Sotomayer, highly regarded worldwide for his research on this type of cancer, recommended the B-R for me and my local Dr. agreed and is administering it just 5 minutes from my home rather than the 3 hour drive. I was just his second patient on it, so he's not as familiar with it as others he's done for years. Will be anxious to see what you decide - keep us posted. I have not used Zofran - is that for nausea? I will mention it to him next week - thanks so much. Fran

    Zofran
    Yes, Zofran is for nausea. It works well, but since my specialty is not oncology, not sure if it is the drug of choice for chemo induced nausea.
    My largest node is/was 2.1 cm; removed from right groin 1/7 for biopsy. I think my largest nodes are 1.7 and 1.8, that cannot be felt. My gut tells me to attack this thing; I'm having a hard time with this watch/wait strategy. I've read a couple articles online that discuss approaching FNHL from a curative standpoint, but both oncologists have reiterated that this disease is incurable, and the treatment manages it.
    My husband and I winter in Florida, and summer in Michigan; my plan is to treat when we return to Michigan in May....
    Thanks for all your help, Deb
  • KC13167
    KC13167 Member Posts: 215
    Deb S said:

    Zofran
    Yes, Zofran is for nausea. It works well, but since my specialty is not oncology, not sure if it is the drug of choice for chemo induced nausea.
    My largest node is/was 2.1 cm; removed from right groin 1/7 for biopsy. I think my largest nodes are 1.7 and 1.8, that cannot be felt. My gut tells me to attack this thing; I'm having a hard time with this watch/wait strategy. I've read a couple articles online that discuss approaching FNHL from a curative standpoint, but both oncologists have reiterated that this disease is incurable, and the treatment manages it.
    My husband and I winter in Florida, and summer in Michigan; my plan is to treat when we return to Michigan in May....
    Thanks for all your help, Deb

    Nausea
    I was given prescriptions for both Zofran and Compazine. Having two on hand allowed me to take one or the other med depending on the degree of nausea I experienced. I had better relief from Compazine. I'd do just about anything to avoid vomiting! Kellie
  • miss maggie
    miss maggie Member Posts: 929

    Has anyone done Bendamustine - Rituxan
    Hi Mary - you're exactly right - everything we read says the same! CHOP is usually a harder to tolerate treatment - if that's true, I sure dread when my time comes for that one. I've heard from just 4 who used B-R and other than being fatigued, none of them have had the other 3 bad side effects I have. Can barely drag myself out of bed to go for the 3xweekly Neupogen shots required to raise my very low white cell counts the two weeks following chemo. They also have side effects for me, so perhaps some of my sickness is coming from them, not all from the chemo. No real way of knowing.

    Thanks for caring and so happy again for you! Fran

    Bendamustine
    Hi Fran,

    Way back when I first was DX, I went to a meeting sponsored by Dr. John Leonard from Cornell Medical Center in NYC. I believe Bendamustine was developed in Germany, not sure? Anyway, I had no idea what was in store for me at the time. I added this treatment to my notes. One of the doctors mentioned this treatment has had good results.

    So sorry for all your side effects. Hopefully it will be well worth it.

    Love Maggie DX 09/09 Extranodal marginal zone b cell NHL remission Jan 2011