I think it’s back

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I was first diagnosed with FNHL in October 2019 . I have had six cycles of Rchop chemo. This finished in March 2020. I have been receiving retox maintenance every eight weeks but three weeks ago my chest has started to fill with fluid and the retox stopped. I knew the cancer would flair up again but didn’t think it would be this soon.I am now waiting for PET scan and lymph biopsy but doctor thinks it’s coming back . Did anyone in the group have their cancer come back so soon and if so what treatment did you receive. Thanks

Thehighlander over 3 years ago

Hi Ed58 and welcome to this corner of the Community.

I am Mike Thehighlander and I help out across our blood cancer groups. Although I have a rather different type of NHL my type is also incurable and have relapsed a number of times over my 22 years (see my profile).

I am glad to say that my various treatment teams have found the next treatment to get me into long term remission back in Sep 2016 - the first time in over 17 years.

Let’s look for some of the FL folks to pick up on your post and let’s look for a clear path put in place to get you back on a positive road.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

johnr over 3 years ago

Hi Ed, sadly this can happen with FNHL even though you are on maintenance treatment, they may want to do a biopsy just to check if it has and see if the have been any changes. Let us know how you get on.

John

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are

Londoner12 over 3 years ago in reply to Thehighlander

Mine came back quite quickly. I had RCHOP first time and R-Bendsmustine the second time. I've just finished it and will do maintenance ritux. It's tough though, believing it will stay away after a relapse.

Ed58 over 3 years ago in reply to Londoner12

Thanks for letting me know. It’s so worrying waiting for tests and results. The weeks drag on and you think you are getting nowhere. Have an appointment for biopsy tomorrow and heart echo on Monday but no word of pet scan yet.

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