Dlbcl 4 weeks after end of PR chop

Hi
I was diagnosed with stage 4 Diffuse large B-cell lymphoma (DLBCL) in july …Bony disease she put i am still not sure what was ment by that.
The tumour was huge on my face all the way across the mandible and up the parotid.It was 7 inch long and over 6 wide.
Started the treatment and it worked very well.
By cycle 2 bone disease had gone.The lump was tiny.Then the end of cycle 5 the lump changed and got a bit bigger.Saw doctor seemed to think it was scar tissue.
So i am 4 weeks out from cycle 6.100 miles from my team.
And the lump has grew doubled in size and its very hot to touch red and swollen.
I know i havent had the pet they want me to go home and have an early pet…but in my heart i know its back…its very different to last time.
The lump.is very very sore.
So i guess this means im high risk and on for second line treatment.
I honestly thought that i was gunna make it.

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Hi @louisa9704 welcome and it sounds a real rollercoaster, scary time for you.
I hope you do not mind me asking but which part of the UK are you in?
The Blood Cancer UK support line is there for you on 0808 2080 888 and we are also there for you.
I find this is the one place where I can say what it is really like to be me, I hope you will find this a safe place for you too.
I hope others will be able to share their experiences too.
Perhaps now is your opportunity to write down your fears, symptoms, questions and practicalities.
If you are offered the opportunity to go on a trial then Blood Cancer UK have a trials team on 0808 2080 888 you can talk to.
I look forward to hearing more about you so please do keep posting how you are doing.
Be very kind to yourself

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Hi
Thank you for your reply.I came to my mums in the west mids had planned to stay till jan until my appointment…But now i have to go home early to the north west forunately that has the clatterbridge hospital which i have read has just started doinng Car T.This lump is weird and i dont know why it has done what it has done.Not even finish the cycles before it started changing.Its so sore and hot i cant touch it much.I am very scared the chemo was as hard as it gets for me i have a reactive immune system and i reacted each time apart from cycle 6.I thought id win as somebody said until the scan comes back i dont know.Luckily i have no B symptoms yet i got them when it was bony last time.
So im staying here till weekend coming we are going to have our christmas friday coming and then go back and start thus process again.I wonder if this has happened to anyone else.

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Well wherever you are you have the Blood Cancer UK and Forum family around you for support.
Have a lovely Christmas Friday at your mum’s.
Please really let your medical team know exactly what is going on for you when you get back
I hope others will be be able to share their experiences for you.
Travel safely and really look after yourself and please do keep posting how you are.

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Dear @louisa9704,
I am so sorry to read all of this, you have had such a difficult time so far and I can hear the anxiety in your words.
Please do take good care when travelling back and if things worsen before then please do go along to your nearest A&E department. I am just concerned that you mention the area being red and hot. Have you explained this to your team?

Assuming you are well enough please enjoy the early Christmas with your Mum.

You know where we are if you need us - always happy to support you. 0808 2080 888.

Take good care,
Heidi J (Support Services Nurse)

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Hi heidi
Thank you for your reply.
My lymphoma started end of march wss diagnosed end of july.It was thought to be parotid cancer.Was then disgnosed as Diffuse large B-cell lymphoma (DLBCL)
Due to lenght of time it grew out of hand so was bulky…i was in so much pain…fast forward to now i have a lot of swelling and it hurts some of its rock hard the old tumour he thought was scar the rest is slightly softer.It is hot to touch and the old tumour is red.
I feel quite well have been decorating…i have a taxi back on monday next week and a Pet at clatterbridge
.Thank you for your message i appreciate it.

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