Non-Hodgkin lymphoma

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refractory dlbcl with possible cns involvement

jas22
Posted by

my partner had follicular lymphoma possibly dlbcl  lymphoma in his spleen he had rchop from may until august 17 on his pet scan his spleen was still active now its shown dlbcl in neck too its transformed into high grade the specialist called in refractory we went to see specialist at the Christie again yesterday he had to have a lumbar puncture as thickening was showing in the menegies of the brain. Results early next week...then treatment but prognosis poor unless this works then stem cell transplant. I understand and research but was shocked at prognosis any adviice welcome feel so alone.

Julianna

johnr
Posted by

Hi steer clear of dodgy sites stick to the ASH conference papers or the blood journal, transformed fnhl is treatable, if he has had rchop then they will have to use a different regime, not sure if they explained this fully but the treatment can kill off the dlbc but he will still have fnhl and that may re-occur at some point. A stem cell transplant needs to be full discussed to understand the benefits, the Christie though is one of the best places to be. It may be worth revisiting the report from his original biopsy and any done on the spleen so they can be sure of what they are dealing with.

I know others who have dealt with transformed fnhl and are still in remission I believe.

John 

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

jas22
Posted by

Hi John.

Thank you....my worry is my partner who had hope is now thinking the worse as they said its approx 25% chance of working the salvage chemo.....he has not had any treatment in 5 weeks as he transferred treatment to the Christie.. they are going to start treatment asap after his lumbar puncture results early next week other than ct i do not  think he has had a pet other than the one in September that showed there is still activity in his spleen his neck biopsy which was follicular lymphoma recently in Nov showed DLBCL. App refractory is more difficult to treat. I truly dont know if it relapsed or never truly went into remission as it was about 6 7 weeks before he had pet after rchop finished last Aug. He is constantlly exhausted has sweats and pain around spleen is often daily he has to use oramorph often it is so difficult to know how to help.

Ju

jas22
Posted by

I have just read your profile ans see you too had dlbcl aggressive,...congrats on a great remission long may it continue

. I have been okish dealing coping well until they floored us with stats as you call them lol. it made it seem so scary. i want to concentrate on this treatment just working and then whats next but the stats are stuck for now especially with my partner who is living with this awful disease. I know its the past but my partner had 6 cycles of r chop and no pet half way...I was always of the mind last one Aug 17 then road to recovery how wrong we were.

johnr
Posted by

Whilst refractory disease can be challenging it can be beaten and a good friend once said to me someone has to be a good stat, so remember that, also remember stats are numbers crunched in a certain way, recrunch them and you can get a different outcome.

They are around 5 years out of date as well and your partner is not a stat, he and his disease are individual to him, thats why understanding the make up of the disease and then looking at the options and choosing the right one is so important, as different drugs can be target a range of proteins or expressions in the cells as they develop, the drugs can either block signals to replicate or work in conjunction to weaken and then wipe out those mutating cells. 

From what I have read a stem cell transplant will be his best long term option and Mike has had a few of them in his time and can share more about that.

Whats important now is to look to the immediate future, getting the right treatment and getting through it.

Dealing with relapse or refractory disease has to be hard but the staff at the Christie will be there every step of the way and you will both get all the help you need. 

We are all here to help and hold your hand through this.

John 

meant to say the are some new emerging treatments like T-car treatment and some new drugs to, may be worth asking if the are options at this stage

also when I was diagnosed in 2009 the stats said I had about a 29% chance of making 5yrs thats now 50% and increasing

John

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

Thehighlander
Posted by

Hi jas22, sorry I am late to the table but welcome. Rollercoaster journey comes to mind but the more you are on the forum you will see that most of our journeys have had interesting moments.

John is the man for DLBCL and his advice is gold. I have lived with a rare T cell Lymphoma for over 18 years with the last 4 years requiring some strong treatment. I was put in the position of having to be presented for an Allo Stem Cell Transplant SCT with cells from my brother, well I had two Allo SCTs but that is a long story - hit my forum name and see it but a strong drink is always advised ;)

4 years back when my condition turned nasty my Haematologist started to highlight stats, we very quickly stopped him and agreed that stats would never be mentioned. We also did the same when we had out introduction to my SCT team. The simple truth was that if the treatments did not work then I would not now be sending you this post ;) and look it all worked out.

John would agree when I say that all we have is hope. When things got rough we just asked 'what is next and let's do it' Heamatologists have lots a tools in their tool box so let's hope that they get the correct ones in place.

You will meet up with some amazing folks on the forums and also over on the SCT forum (link at the bottom of my name)

We are always arround to help out or just to listen.

Mike - living my new life and trying to make a difference

'Some journeys take us far from home. Some adventures lead us to our destiny' C. S. Lewis

SCT    NHL    T Cell     Community Champion

jas22
Posted by

Thank you again John...yes I am realising stats I have to forget about and its just whats next getting  through it.

He is an individual....he has shown so much strength and courage the last 13 months and he will soldier on.

He was actually diagnosed in 2012 from lymph node biopsy in his neck which he had radiotherapy for....from then it stayed inactive until a scan showed activity in Dec 2016....then the rollercoaster began.

Today a wee more positive thanks to you guys and not feeling so alone.

Thank you so much.

Ju

jas22
Posted by

Hi Mike....thank you for your message. I have read your profile oh wow what a read....you have been through so much and come out a winner.

I have never had any experience of cancer up until meeting my partner and done my best to understand his when it was follicular lymphoma and inactive.

The rollercoaster of it transforming then being labelled refractory pig headed and difficult to treat had us thrown  totally.  Oct Nov Dec my partner went downhill in his mind just thinking hes going to die the last few weeks he turned a corner after a first chat with consultant at the christie that was until Friday just gone and stats were mentioned.

As i Have mentioned to John yes the stats are now leaving me and I am going to focus on whats next helping him through that....what is next lets do it motto I like.

A more positive day. Thank you so much for your help.

Ju