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Has anyone done Bendamustine - Rituxan Chemo for NHL?

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

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

711tom
Posts: 44
Joined: Mar 2010

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's picture
cookingirl
Posts: 183
Joined: May 2010

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

711tom
Posts: 44
Joined: Mar 2010

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's picture
cookingirl
Posts: 183
Joined: May 2010

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
Posts: 44
Joined: Mar 2010

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's picture
cookingirl
Posts: 183
Joined: May 2010

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

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allmost60
Posts: 3155
Joined: Jul 2010

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
Posts: 11
Joined: Jan 2011

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's picture
cookingirl
Posts: 183
Joined: May 2010

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

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merrywinner
Posts: 620
Joined: Aug 2009

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's picture
cookingirl
Posts: 183
Joined: May 2010

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's picture
merrywinner
Posts: 620
Joined: Aug 2009

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

miss maggie
Posts: 929
Joined: Mar 2010

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

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JoanieP
Posts: 573
Joined: Mar 2010

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
Posts: 11
Joined: Jan 2011

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's picture
cookingirl
Posts: 183
Joined: May 2010

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's picture
cookingirl
Posts: 183
Joined: May 2010

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
Posts: 11
Joined: Jan 2011

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

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KC13167
Posts: 215
Joined: Jun 2010

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

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi Kellie and Deb - thanks for the info on nausea. Hve written it down to ask about Friday.

Deb - from all we've learned these 2 years, you are right to be in "watchful waiting" with nodes under 2cm. Moffitt Cancer Center in Tampa explained to us that IF you begin treating nodes that small before you really need chemo, it won't be effective when tney grow and you do need it. At this point, your own body is fignting to keep the cells from growing. When you add chemo, as you know, the meds not only kill your cancer cells but also the good cells that are working for you now. It was very hard for my 3 adult children to accept 9 months of waiting, so my son from WV flew down to meet with us during a session in Tampa. He was convinced after talking with their excellent Doctors that we were doing just the right thing, and told his sisters who then felt much better. In May when they suddenly took off and jumped to 12 cm (from 3), chemo began immediately. So - hang in there, enjoy your winter here in the sunshine and don't worry about waiting til you get home. Do you live near Ann Arbor where the Univ. of Michigan is? They have an outstanding Lymphoma dept. - Fran

NCaliNHLWarrior's picture
NCaliNHLWarrior
Posts: 8
Joined: May 2013

Hello! Yes Nov.13,14 of 2012 only.Severe reactions and treatment was stopped until March.2013 w/R only 1wkx4.I dont mean to frighten you as we are all different.Severe stinging infusion area next day-arm /hand numb and nonfunctioning- started to stiffin gross popping cracking all extremeties- muscle tightening -muscle spasyms.Woke up one day and found I couldnt walk.Vision blurred -ears sensitive- skin sensitive- neuropathy-loss of balance/coordination.Pads on hands n feet painful-Bladder issues-Nerve pain Im sure Ive forgotten something and then the norm which is nasea fatigue.All this and kept the hair.That didnt matter though..Waiting for that word remission.Hopefully next month! last CTscan showed some nodes GONE! Some smaller some no change.GOOD LUCK TO YOU! Sending Love n Light

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

Hi,

I had Bendamustine/Ofatumumab - ending in October 2012.  In partial Remission!  Let us know your results!

 

I had some side effects with it too.  Still do!

 

 

miss maggie
Posts: 929
Joined: Mar 2010

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

RMurphy
Posts: 1
Joined: Feb 2011

Hi,

I was diagnosed with Follicular Lymphoma 6 years ago and was in the Watch and Wait stage until last Monday. I started the Bendamustine-Rituxan Chemo for NHL Wednesday of last week and am a little nervous and very alone. Never had Chemo and afraid of side effects. Thanks for your posting and I sure hope you feel better. I have read many articles on this combination and it seems to be the most effective combination. I believe my doctor is a wizard (I went through 3 doctors before I settled on one) and if he believes this will work, I know it will work for both of us. So I will be thinking positive thoughts for you. Take Care.

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

RMurphy - you are NOT alone - you have all of us here on this wonderful support site! We'll exchange our experiences and learn from each other.

How have you felt the first week? It's the roughest so if you've made it through, you're now on the other side. Would love to hear your symptoms and hope they're less than mine. I seem to be unusual since others posted have felt much better. Would love to hear....

We too read about the great success rates of T/B and it gives me hope my scan results tomorrow will be that way! Will let you know.... Fran

CountryGal7557
Posts: 165
Joined: Feb 2011

I know of one other person who has exact same NHL as me: Follicular Low-Grade B-Cell Indolent NHL Stage 4a. She is a ten-year survivor - started with CHOP and it kept coming back, then 4.5 years ago took Rituxan (alone) and has been in remission every since. I was my doctor's first Rituxan/Treanda patient DX 3/15/10 and after 4 rounds of chemo everything was clear "no activity". then finished up with 4 rounds of weekly Rituxan August 2010 to ensure a 10 year remission he said. so I'm hopeful.

http://lifeisgood2010.wordpress.com/
I blogged my journey if anyone would like to read it and post here if it's similar to what you are/have/had experienced. feel free to post on my blog as well

Here's a recent video that was made in the UK Nov 2010 as Treanda was just approved there - very optimistic video. http://www.youtube.com/watch?v=rEDNldZeYfE&feature=related

Good luck tomorrow Fran! I will keep you and everyone else on this string in my prayers.
Life is still pretty darn Good!
=)
Janelle

Michele23
Posts: 167
Joined: Mar 2011

Hello all,Just found this site.Am a 16 yr.survivor with Low grade Follicular Stage 3 B-Cell.Have done alot of treatment over the years:Local radiation twice-Chop-Rituxan 10 times 40 total-now doing Treanda/Rituxan.Will be doing my 3rd round next week.My first set was brutal as I felt like I'd been hit by a semi,total pain and slept constantly.After seeing onc.,5mgs.Dexamethasone was added to the mixture for round 2.Truly did not want this but must say it helped a great deal with my pain throughout.The problem is then we can't sleep.Don't like to keep adding pills and such so I try and relieve symptoms in other ways,such as tea and a hot shower.I,ve noticed my nodes have shrunk a great deal already,as they were largely sticking out of my neck.Understand this drug has not been out that long but am hoping to find others who have traveled this journey before me and may be able to share their stories.Thanks for being here,my best to all for good outcomes.Michele

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi Michele and all - haven't posted in weeks, but still hanging in there with just one more Treanda/Rit. to go! Had my 5th sessions M & T of this week. You and I had the same reaction to our first - I too felt like a semi truck had hit me for 10 days, lost 14 lbs., etc. One thing that's helped my last two times has been going into the labs twice a week for hydration with saline following chemo. It's increased my energy, helped my very dry mouth and enabled me to stay out of bed after the first 4 or 5 days for the rest of the month. Suggested by my Oncy. and very helpful. Diahrrea has been my most serious side effect and continues to be debilitating.

My tumor is large so didn't have the remission I wanted after 3 months as many did - and after 10 months of chemo straight (CVP-R failed and went right into Treanda), my Oncy. feels I'm showing such side effects that the last 2 times he's decreased my dosage 30%. I'm sure that's helped in how I feel also but worried am I getting enough meds to get another remission in April when the last CT or PET will be done? It's never ending, it seems. But I'm looking forward to visits in March from all 3 of my grown children and their families, spaced out and they understand if I must rest, that's fine. They're happy to wait on me this year! We must remain positive and know family and friends will invigorate all our healthy genes as well as our energy and zest for life, and keep on going.

Country Girl - I read every word of your blog - thanks so much for sharing! Hubby and I listened to many of the U Tube broadcasts from England as well, and they were very helpful.

Thanks everyone for all your support - prayers go to each of you. Fran

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Fran,
I wish you all the luck in the world tomorrow. I will be thinking of you. I do not know if you will know anything or not, but if you do make sure you let us know the results. John(FNHL-1-4A-5/10)

yesyes2
Posts: 461
Joined: Jul 2009

Fran,

We're all rooting for you. Hoping that your rsults will be good and that pesky tumor is shrinking and soon will be gone for good! Please let us know your results. Will be waiting with fingers and toes crossed and double crossed.

Blessings to you,
Leslie

allmost60's picture
allmost60
Posts: 3155
Joined: Jul 2010

Me too Fran...I'll be thinking wonderful positive thoughts for good results. Hope you don't have to wait too long for the results...thats the worst part when getting the scans and tests done..UGH! Try to be peaceful tonight..(yea right)..well.. at least try! :0)
Much love to you...Sue (FNHL-2-3A-6/10)

miss maggie
Posts: 929
Joined: Mar 2010

Hi Fran,

Add me to the list. I will be waiting and hoping to hear positive results from you.

Love, prayers, blessing, fingers and toes crossed. maggie

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