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jerzpilot's picture
jerzpilot
Posts: 39
Joined: Nov 2009

Hello everyone, I used to post in here when newly diagnosed with FNHL as a way to express my feelings and find out about this disease. I was first diagnosed in Oct of 2009 and went thru RCHOP in 2010 following a two year Ritux treatments in January of 2011. All the test concluded that I was back in remission and no signs of lymphoma anywhere. Well, 6 months to completion the lymphoma was back and growing by the month (what a bummer). For the second time in my life lymphoma has changed my life when life was starting to smile back at me. As a result I went back to a watch and wait period with a couple pet scans and biopsies in between. Next week I will start chemo (Bendamastine and other drugs) and by Oct. or Nov. the doctor wants to perform a bone marrow biopsy. Have anyone passed by a relapse and if so what procedures were taken? Thanks so much for reading.

 

Alex

illead's picture
illead
Posts: 501
Joined: Aug 2012

So sorry Alex.  It is what we all dread.  My husband has Mantle Cell Lymphoma and is in remission over a year.  Bill's chemo was Bendamustine/Rit.  He is now on his 2nd year of Rit maintenance.   Although there are some who have had opposite  experiences,  we are very thankful for B/R and Bill breezed through his chemo and the maintenance, no hair loss and only a little more tired for a day or two.   With MCL, there is always relapse and then chemo doesn't work.  That is the standard prognosis at any rate, however, his oncologist says that if he stays in remission long enough, they will use Benda again.  It is so new that I think the jury is still out on the long term benefits.  I am thinking you will do very well on it.  We are very thankful it was available when Bill was diagnosed.  Hang in there, we're hoping the best for you.  Bill & Becky

jerzpilot's picture
jerzpilot
Posts: 39
Joined: Nov 2009

Thank you very much Bill & Becky, Thats goign to be the next treatment (Benda/Ritux) but it's so it can put me back into remission and wipe out my immune system so it can prep me for the boen marrow transplant. I am happy your husband is on remission and may God keep him healthy. God bless. 

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

Hi,

I was originally dx in May 2010.  Did 4 rounds of Rituxan in Sept. 2010.  Partial Remission.  Relapsed and had six rounds of Bendamustine/Ofatumumab from May 2012-Oct 2012.  In Partial Remission and doing fine.  Some collateral damage from the chemo- joint pain, memory issues.  But all in all it did it's job.  I asked my onc why am I partial remisson and he said that a true remission would be that there is no indication of any disease and that is not the case with me.  I am stage IV so maybe that is part of that issue too.  I still have some small nodes in my chest area and groin as well as bone marrow involvement.

So I think you'll do fine with the Bendamustine/Rituxan. I found that during tx I would be tired and didn't have much of an appetite for the first two weeks.  Then the second two weeks after tx I would be feeling better and getting my strength back along with my appetite and then would get the next infusions!  :)  No hair loss and from what I've heard from others it is one of the milder chemos.  It's all so individual- everyone's experience is different.

Wishing you all the best wth the treatments and the transplant.  Please keep us posted on your progress!

Hugs,

Donna

 

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