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Bendamustine/Treanda

onlytoday's picture
onlytoday
Posts: 586
Joined: Jun 2010

Hi All,

Went to the Onc yesterday and I am going to have Bendamustine. No Rituxan with it because of my bad allergic reaction last time. So next I have a couple of tests to get through and then if they come out okay we will proceed. Oh boy.

So for those that have had Bendamustine- details please?! I have read about it and it sounds cumulative of course with each month getting more interesting. Keeping in mind that we are all individuals and our experiences differ, just wondering what it was like for you. My onc said it's a monthly tx - two consecutive days each month for 6 months. He also said it is usually well tolerated, no hair loss and there is usually a week of not feeling well out of the month.

He believes that in addition to shrinking my swollen nodes the tx can help with my rib pain and my intestinal problem- feels they are related to the NHL. Does think the NHL has moved into the small intestine from the stomach.

Thanks for listening (always). Prayers and lots of hugs to all of you!!

Donna

miss maggie
Posts: 929
Joined: Mar 2010

Dear Donna,

I have no experience with Bendamustine/Treanda, as you very well know. I was only
treated with Rituxan. A few months after DX I went to a seminar in NYC, and heard
only positive results with Bendamustine. I am sure you are relieved your oncologist
is moving ahead with treatment.

I know you will receive many answers to your post about Bendamustine/Treanda. Hopefully
this treatment will solve your intestestial problems. Has the anti-biotic treatment
helped at all?

I went to the CSN education site. If you have time, you have the option of listening
to the conference you missed. Some where in the middle of the conference, Bendamustine
was the subject for NHL. Unfortunately, there is no text for this conference. LLS always
gives the option of listening to the minutes, and going to Adobe reader and pasting the
info to read. For me, I find this better. Oh well.

All my love and prayers, blessings to you. Maggie

onlytoday's picture
onlytoday
Posts: 586
Joined: Jun 2010

Maggie,

Thanks for your quick response. Why is it at moments like this we feel alone?? I've had a few emotional moments today- just adjusting to all the info of yesterday I think. It means a lot to know you and others are there.

I will check out those minutes. The antibiotic (on my FOURTH round) hasn't done much. While on it I occasionally see minimal improvement. A day after it is done I'm a full blown mess again. The onc really feels confident that the tx may do the trick. My MZNHL secretes IGM and that protein may be adhering to my nerves (which would explain my rib pain) and can make the bacteria in my small intestine very resistant to antibiotics! Oh my gosh the thought of finally getting relief from either thing plus my fatigue is really really overwhelming. So I'm looking forward to getting the tx started and done.

Thanks Maggie. Hugs and prayers,
Donna

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Donna,
Having a plan in place has got to be such a relief, but I do understand how you can feel overwhelmed by it all. I'm sure it's the idea of starting a new treatment and not knowing what to expect, plus just wanting to start feeling better! You are going to be ok Donna, and we will be here every step of the way with you. I've read a few articles on this treatment and it seems it's not as harsh as many other treatments. You are a strong woman and I have complete faith that you will fight through this and come out even stronger. You know we will have you in our prayers and be thinking only good positive thoughts for GREAT results. Take care, and know you have a family here backing you 100%. Much love...Sue
(FNHL-2-3A-6/10)

onlytoday's picture
onlytoday
Posts: 586
Joined: Jun 2010

Sue,

You are right, having a plan helps. Just have to jump thru a couple of hoops with extra blood work and a biopsy and we should be able to get a schedule going. I never realized how important concrete plans are to me until THIS! :) It's always got so many parts to it I just get too full of info and then get overwhelmed a bit.

I am excited (when I peak thru this little cloudy sad haze surrounding me today) at the prospect of actually not having this ridiculous rib pain (since Dec 2009) and intestinal issues (Dec 2010)and fatigue (Dec 2009). Now that I wrote that it is clear to me that I need to skip December from now on! Then again December of 2011 was uneventful so I guess the trend has stopped. hehe

I'm going to fight through this. Anxious to hear from others out there that have first hand Treanda experience. One thing I'm concerned about are the gastrointestinal side effects of it -what with my present condition that sounds a bit like torture.

Will know more in the coming days as further blood test results come in and I get that biopsy done, etc.

Hope all is well with you. I know that you still have the hip issues along with fatigue. It all takes time I guess. I know that your beautiful grand daughter ( who is so so cute!!) keeps you going! Do you guys have any fishing trips planned this summer?

Thank you always for being there every step of the way for all of us! You're the best Sue.

Love ya,
Donna

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Yep...we have reservations at the cottage down on the river for the first weekend in May.(4 days). The spring slamon will be running up river and we hope to land a few! They are the best eating salmon of the year, but hard as heck to land. We do pretty good every year, so hopefully this year will be the same. Lizzy does more than keep me going these day...I'm flat out running trying to keep up with her...ha! I love every single minute of it. Any day now she will be walking, so I'm getting the house child proof and safe for her. Can you believe she will be a year old in 2 weeks??? Seems like just yesterday I was telling everyone here that I was going to be a grandma again! Lordy how time fly's! Anyways... I'll let you know how we do fishing. You take care now and keep thinking positive thoughts that all will be good...you will get through this new treatment...you are a strong lady. Much love...Sue

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hey Donna, you will be in my prayers, as always stay strong and try to keep positive!!! Vinny

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

Hi Donna,
I only received Rituxan for treatment and like you had a really hard time with it. Hopefully this medicine won't be as harsh as the first one. I will be sending you a huge (((HUG))). I will be praying that you do well in your treatment, take care.

Sincerely,
Liz

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Hi Donna,

You're in my thoughts and big hugs coming your way....

Jim

Susan55
Posts: 16
Joined: Mar 2012

Hi my husband just completed two days of Bendamustine on April 24 and 25. He was hydrated for 2 hours before and after the Bendamustine and the time during he drank plenty of fluids such as gatorade x and had ensure. He had no terrible side effects but is taking Ondansetron for slight nausea. After the first treatment they gave him Ondansetron and Ativan before he left. My husband goes this Thursday for the Rituxan. Hope this is helpful. Best wishes Susan

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