New large growth

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Hi.

Started with dlbcl at beginning of April this year.

Took a while to be diagnosed as it was thought to be parotid cancer.Turns out it was this.I had a very very large tumour on my face stretching all the length of the mandible and up my face it was around 8 inches.

Started treatment in July and I had a really good response it had gone out of my bone marrow by the second one.Everything was great until end of cycle five.

I had a new growth come up saw a doctor and they seemed to think it was scar tissue.So carried on with cycle 6.I am 4 weeks post cycle 6 was due a PET christmas week so I decided to travel to my mum and bang I have a large lump come up.and I mean large it's around 3 inches by 4 it come up in a week.So now I have to travel back and go for a quicker pet scan.Has anyone else had this it's not in the same place as it was as its so sore and hot to touch and hard and tingly at times.I has grown much quicker that the original one ever did.I am at a loss and frankly scared to death.Im 47.Had a terrible time with chemo and do not know what the future holds .

  • Hi  and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your concerns..

    I am Mike and I help out around our various Lymphoma groups. 

    I don’t have DLBCL but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - NOS NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

    Over my 25 years I have relapsed many times but I have also had as many false alarms……

    I am now 9 years out since my last treatment and yes over the past 9 years I have had a number of lumps and bumps come and go with no treatment required…… I also have ‘something’ on my lung, but that one was checked out and 8 years on it’s still ok…

    At 4 weeks post your treatment your immune system is all over the place and yes I have talked with folks who had reactive lymph-nodes pop up just as you are experiencing and go down.

    But obviously there is a chance of this being some type of left over Lymphoma but this can be dealt with…. I know many people who have had a few zaps of radiotherapy (like myself) to spot clean any lingering areas.

    Let’s look to see what the PET finds and you will have to take it from there….. look for a positive news but you will be able to deal with the not so positive news.

    Always around to chat ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hello Mike

    Thank you for your reply.

    This is a very hard time for me it started the end of cycle 5 for the pola r chop.

    The tumour went so small then it went to a peak scar tissue then I had sepsis and lymph nodes popped up and then I could see a difference in the nodes.The worst part is I'm a 100 milea away from my team and was hoping to spend time with my mum for Christmas but the lump has grown so much in a week.Weirdly enough it's in a slightly different place to the original and is behaving different.So hot to touch and red.

    I guess I'll have to go back for the pet and wait for the results.The chemo was so hard I have a reactive immune system.Its frightening to start again.

    Lou

  • Hi Lou  having your team a distance away is challenging.

    I had my first 15 years treatment locally in Inverness but my 2 Allo (donor) Stem Cell Transplants (June 2014 then Oct 2015)….. were done down in Glasgow so during the winter it can be a 7 - 8 hours round trip….. my last count was 25 round trips - 6000+ miles!!!!

    Until you ‘actually’ know what you are dealing with it is all a guess and from my experience I have often come to the wrong conclusions…… 

    Let’s look first answers soon ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Well I've had my Pet results.I have refractory lymphoma it has grown back.

    Also there's a suspicious area on the brain so I gotta have an mri and a lumber puncture.

    If it's not on my brain I can straight away have Car T therapy if it is then I have to have chemo for that.

    So next few weeks will be heavy on things going on.

  • Hi  sorry to hear this and unfortunately I do know how this all feels as my 2 types of T-Cell NHLs relapsed lymphoma and was ‘refractory

    Let’s look for you to get the MRI and Lumber done and a plan put together ASAP.

    CAR-T is an amazing treatment and now much less challenging that SCT.

    You may want widen your support and information platform so do check out Lymphoma Action.

    Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

    They run various Support Platforms I highly recommend these groups as this will widen your support base to a large group of people and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……. and you may well bump into me there as I also volunteer for LA.

    They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.

    The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi, 

    I am more or less in same situation, I have been diagnosed DLBCL in Feb 2023,

    they given me 6 cycle or RCHOP and finished in September 2023 but my pet scan never came up clear. I got 2 more tumor in intestine in April 2024 done my colonoscopy and its again came up DLBCL now waiting for the PET scan (next week) than they will decide. I have a million dollar question that the RCHOP doesnt work? let see 

     Is your Dr. said to you that they do Car T?(if is not in your brain)

    1. Mine never went away infact it grew after cycle 5.Dr said it had worked out to evade p r  chop.The spot 9n my brain they aren't sure of..I'm.in hospital at min pain in neck...if it is NOT in my brain I will be straight away refered for Car T if it's in my brain I need The RICE chemo regime then the CAR T comes after.Fortunately I'm close to the clatterbridge hospital liverpool so I'm lucky.My tumour has regrown on the old site having said that it was over 7 ins in size so it was just to bulky.Im sure they will recommend Car T for you..keep me posted 
  • Thank you for your prompt response, I am 53 year old and  in London (whipps Cross Hospital) , defiantly i will update you

  • Hi

    Just visited the consultant (still   waiting for PET scan) but they told me 2nd line treatment which is RICE (2 /3 cycle) flow by Stem cell transplant (ASCT). If any relapse or tumour came after one year than they will go directly to CAR T otherwise CAR T is 3rd line of treatment.