Has anyone done Bendamustine - Rituxan Chemo for NHL?

cookingirl · January 2011

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

Bendamustine
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

RMurphy · February 2011

Follicular Lymphoma
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 · February 2011

RMurphy said:
Follicular Lymphoma
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.

RMurphy - you are NOT alone
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 · February 2011

cookingirl said:
RMurphy - you are NOT alone
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

So glad to have found you!!!
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

COBRA666 · February 2011

cookingirl said:
RMurphy - you are NOT alone
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

The Big Day Tomorrow
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 · February 2011

COBRA666 said:
The Big Day Tomorrow
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)

Fran,
We're all rooting for
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 · February 2011

yesyes2 said:
Fran,
We're all rooting for
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

Me too!!!
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 · February 2011

allmost60 said:
Me too!!!
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)

Here for you also
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

Michele23 · March 2011

CountryGal7557 said:
So glad to have found you!!!
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

Newby doing Treanda/Rituxan
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 · March 2011

Michele23 said:
Newby doing Treanda/Rituxan
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

Newby doing Trenada/Rit.
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

NCaliNHLWarrior · May 2013

cookingirl said:
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

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 · May 2013

NCaliNHLWarrior said:
B/R
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

Bendamustine

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!

PN1982 · August 2016

Follicular Lymphoma

Hi everyone,

I am a new member in this page. I am just doing some researchs about Bendamustine as my husband just had the 1st cycle and I am just wondering about the sucess rate on this type. He had 2 cycles of RCHOP but the tumour was just shrunk a littile bit, then doctor decided to change to Bendamustine.

If anyone had the same thing, please update me some info. We are just so worried and scared at the moment as the last 2 Chemo did not really work.

Thanks everyone

PN

Has anyone done Bendamustine - Rituxan Chemo for NHL?

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