Relapsed DLBCL

Hi again Rosie….. I am sorry to hear your news.

Having relapsed a number of times with my 2 types of T-Cell NHL I can feel your frustration.

The positive thing is there are some very effective tools in the tool box to get this all back on track.

A number of years ago you may have been looking at having a Stem Cell Transplant (SCT).

This was me back in June 2014 then Oct 2015 and it did the job for me…… but the emergence of CAR-T has been a game changer….. although if CAR-T had been available 10+ years ago it still would not have worked for me.

There have been a few group members had CAR-T so let’s look for them to pick up on your post.

I regularly talk with folks who have or are going through CAR-T on the various Lymphoma Action Support Platforms.

If you are in the UK do check out their Support Platforms

The Lymphoma Action website has lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

All the links I use are taken directly from their website and I have volunteered with them about as long as I have with Macmillan……

Their Closed FB group alone has over 6300 members and unfortunately you would most likely bump into me on there also ;)

There are a lot of folks in the group who have navigated CAR-T……. A few had SCT….. relapsed and went on to have CAR-T and have achieved long term remission and they have said that compared to going through SCT….. CAR-T was much more do-able 

They also run a dedicated monthly Online Support (zoom) Groups specifically covering all things CAR-T…… a great opportunity to ‘talk’ with others. 

Hi Mike

1. I know all about Lymphoma Action from when I was first diagnosed and the nightmare journey i went through with my then appalling Haemo! I went to post on LA forums to chat about it but i was promptly told off! Just as i needed advice as i was so upset LA didnt like me posting about my negative experience with my hosp or haemo.  I never mentioned names or locations either.  So LA let me down badly and i refuse to use them again. They are supposed to support ppl through this lymphoma nightmare not let ppl down! 
2. However i have found mcmillan nurses to be brilliant and very knowledgeable.  Mcmillan h/line supported and encouraged me to put in a formal complaint about my treatment (this is now with the Health Ombudsman).  I will continue to talk to mcmillan nurses from now on.  I just wanted to hear the experiences of other ppl who had car-t.  

Hi Rosie….. again, lets look for anyone who have navigated CAR-T to pick up on your post

Cancer charities like LA and indeed this Mac Community are very edgy when it comes to anything remotely near naming and shaming especially on a public or semi public platform as there are cases when it’s unfortunately come back to bite them  

I did not mention any names or hospitals/locations whatsoever! I asked for advice/support after explaining my traumatic experience....thats it. 

Only person ive seen who posted on her about car-t had a severe reaction and was in a coma for 3wks!! Not what i wanted to see really! 

Unfortunately there are no guarantees with any treatment……

A number of years back I talked with someone who had a significant reaction to Rituximab as a first line treatment and it put them in high dependency for a number weeks.

During my second Allograft SCT I developed a heart issue and this put me in high dependency for a few weeks,

It’s safe to say that there are far more good stories out there than there are not so good stories……. and the number of people who come through this very small community is a small microcosm of the people out there with stories to tell.

In the UK…… someone is being diagnosed with one of the 60+ types of Lymphoma every 26mins……. There are a lot of people out there that we don’t hear their stories.