Relapses

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Hello all. I have Diffuse large B cell non-hodgkins lymphoma triple hit. I was first diagnosed in autumn 2018 but at that point it was stage four and the primary was 19 cm across. Apart from 1 swollen lymph node the size of a baked bean in my neck, all the tumours were internal and invisible. Chemo got rid of them all. 8 weeks later it was back, this time a red growth on my eyebrow and a swelling on the side of my head. Chemo again got rid of it, but almost killed me in the process - I got encephalitis. Just 2 weeks later it was back, this time a collection of red shiny lumps on my skin between my neck and shoulder, all in a ring like a toadstool ring. I was told I couldn’t have any more chemo so went to London for CAR-T. The consultant there said mine was one of the most aggressive cancers he had ever seen with regards to the speed at which it appears and grows. I had the CAR-T in November 2019. It caused a massive cytokine reaction (encephalitis, neurotoxicity, heart and kidney damage, pneumonia, sepsis and seizures) and I ended up in a coma on life support for 2 weeks and spent 7 weeks in hospital. 2020 was a long slow recovery but I was in remission again, this time for a number of months. By September it was back. This time a swelling on the bottom of my foot which initially just looked like a fallen arch, followed by a red mark on my shin, and a PET-CT showed one in my groin. I was then given my DS1500 This time I had radiotherapy, (last October) and another scan shows it is now ‘inactive’ - a fourth remission! What I want to know is Why does it keep coming back? Do they just not kill it all? Am I predisposed to it? And is there anyone else here who has been in remission multiple times? I haven’t met anyone else who has has the same trouble as me with recurrence.

Galilee over 3 years ago

Wow Lellynelly,, you really have defined Rocky Balboa's phrase about how nuch punishment you can take and still keep moving forwards.

My understanding is that they can't guarantee to kill it all once it's metastasised, mainly because it can seed itself with such a small speck. That's why we're considered incurable.

Hopefully they'll find you something a bit more tolerable to knock it out if it gets off the canvas again.

Stuart x

tvman over 3 years ago

Hi Lellynelly

Wow, what a history. Someone up there must like you! Aggressive is putting it mildly. Is there any way you can be checked regularly to save you being hospitalised? If you have such a reaction that you have had previously you may not be so lucky next time. It sounds like those who looked after you need a real pat on the back

Keep well, Lellynelly

Tvman x

Love life and family.

Norberry over 3 years ago in reply to Galilee

Galilee is right about the tumours Lellynelly. I asked why couldn't mine be tracked down and slaughtered on the spot and the onco said they are so tiny they can't be seen. Your treatments are working, you need a year in a spa resort I think now. Fingers crossed for the future. Xx

FormerMember over 3 years ago in reply to Norberry

Holy sh** Lellynelly you've been through so much to stay with us! Long may it continue but without those awful reactions.You must be making history...I hope you have a period of stability now, you've certainly earned it! xx

anndanv over 3 years ago

Hi Lellynelly, If I were you, I think I'd try to focus on the remissions as some people aren't lucky enough to have one, let alone four, so good for you! When my Melanoma metastasised my oncologist told me when they were removing say affected Lymph Nodes to think of a dandelion that had gone to seed (the ones you blow on to get the time) get someone to blow it and you try to pick up ALL the seeds. That is how difficult it is for the surgeons to remove them. All they need to leave behind is one and it can regrow! It certainly put things in prospective for me! Also how lucky any of us are who go into remission at all!

Love Annette x

Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!