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bendamustin

scuttlebug11's picture
scuttlebug11
Posts: 175
Joined: Jun 2011

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

allmost60's picture
allmost60
Posts: 3162
Joined: Jul 2010

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's picture
scuttlebug11
Posts: 175
Joined: Jun 2011

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

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

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..

anliperez915's picture
anliperez915
Posts: 746
Joined: Sep 2011

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

miss maggie
Posts: 929
Joined: Mar 2010

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's picture
onlytoday
Posts: 585
Joined: Jun 2010

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
Posts: 929
Joined: Mar 2010

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

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

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..

miss maggie
Posts: 929
Joined: Mar 2010

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's picture
onlytoday
Posts: 585
Joined: Jun 2010

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
Posts: 929
Joined: Mar 2010

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

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

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
Posts: 929
Joined: Mar 2010

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

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

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..

ecurb12's picture
ecurb12
Posts: 2
Joined: Dec 2011

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's picture
COBRA666
Posts: 2418
Joined: May 2010

Bruce,
That is always great news to hear. John(FNHL-4A-1-5/10)

allmost60's picture
allmost60
Posts: 3162
Joined: Jul 2010

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
Posts: 8
Joined: Feb 2012

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's picture
allmost60
Posts: 3162
Joined: Jul 2010

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)

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