How common is aggressive Follicular lymphoma?

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Beginning of June 2020 I was a healthy young man of 64 cycling and long-distance walking ... and three weeks later I was breathless after 50 steps ... and on my way to hospital under blue lights. With fluid on the lungs (pleural effusion), as it turned out. After a host of tests and scans, a biopsy confirmed follicular NH lymphoma: level 4 and aggressive. Within a week I began R-CHOP and am now coming up to my 4th cycle. There have been other complications for good measure, including shingles activation and blood clots.

To me, the decline has seemed astonishingly quick. The nice thing is that my lungs are now slowly, slowly clearing out of fluid, so breathing is getting much easier and I can walk for about an hour before pooping out.

The strange thing, from my perspective, is that I haven't experienced any of the common symptoms of follicular lymphoma: no night sweats, no high temperatures or sudden weight loss, no easy bruising or bleeding, and so on. And its onset has seemed so fast.

Anyone else out there with a similar experience of this? 

  • Hi  and welcome to the community.

    I don’t know how common aggressive FL is as most FL folks say that they are on Watch and Wait for a period of time before treatment is required.

    I was diagnosed with another type of NHL way back in 1999 and apart from a small rash that was the extent of my symptoms and it took 14 years before it became aggressive within a period of a few months requiring aggressive treatment.....

    Funny old journey blood cancer can be, yes treatment can be hard work and the recovery just as bad but the great thing is that on the whole it is very treatable Thumbsup

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

    1. Hi and welcome  livingafloat I myself  had shingles and  2 d v t before they found out about  my FL i did not have  any  other symptoms so I can relate to your self im now 1 years months  on and fouBlush a lot  of people who where  so helpful on this  site  i hold them  in very high regards it will  get  easier good luck clecker  onwards and upwards Blush 
  • Hi livingafloat and sorry to see you have had to join us, sadly your experience is not unusual the have been many over the years who have had FNHL and been living with it for some time and only find out because something else happens and they end up with a lymphoma diagnosis. 

    FNHL is classed as an indolent type of lymphoma as Mike has mentioned, but how indolent it is varies from patient to patient and in your case you don't know how long you may have had, it as the symptoms you refer to are classed as "b" symptoms which not everyone experiences. 

    As this is all new to you, has your consultant explained the aggressive nature of your type of lymphoma so you understand and why its showing aggressive signs, as its a word that's used with caution when discussing FNHL and usually used to classify the type of lymphoma. 

    If not then worth having a chat and just checking that if it is "aggressive" in lymphoma terms it is FNHL as sometimes its hard to type lymphoma and I am sharing this not to cause worry but to help you understand how you have gone from being fit and well to unwell and needing treatment. 

    R-Chop is still the big guns used on this disease when its acting as your's is so lets hope it knows you in to remission. I had 8 rounds back in 2009 for a different type DLBC so any questions just ask, I don't post as often these days but happy to offer advice when I do login.

    John 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • Thanks for your helpful replies. It's true, I have no idea how long I may have had this before my lungs started closing down. The CT-scan showed a tangled 'mass' of lymph nodes lurking behind my stomach (is how a consultant put it) that, in retrospect, may be one of the reasons for what I took to be a middle-age distended belly that no amount of the 5/2 fasting diet seemed to reduce. So that could be a year or two. Who knows.

    The 'aggressive' aspect to my lymphoma is a word used by another consultant. It was the reason my team began the R-CHOP days after confirmation of lymphoma. They consulted with a specialist team in Oxford to help guide their actions, who basically said, 'Treat the patient and what you see in front of you, rather than the category of follicular lymphoma'. 

    I guess what I'm finding out here is that the lymphoma experience can be radically different from person to person.

  • With over 60 types of Lymphoma each journey, even with the same treatment can be very different. My rare skin NHL - CTCL was a rather long and winding 17 years before I heard the word Remission (see my profile) but the main thing to keep in mind is that these teams are at the top of their game and where required will reach out to centres of excellence to get advice.

    Keep the greater good in mind all the time, take each day as it comes and like John and myself you will be looking back on this life event.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks Highlander. Wise words indeed. It's certainly been and long and winding road you've travelled. I salute your perseverance.

  • I'm in remission from a different type of NHL, but I also had R-CHOP.  I managed to get a DVT along the way as well as having a spectacular reaction to intrathecal methotrexate.

    I'm not sure how much your team has explained, but aggressive lymphoma is more treatable.  Chemotherapy works best on cells which are rapidly dividing, so indolent forms of lymphoma are often not treated until they transform.

    I've come across very few people who had the classic B symptoms at the time of diagnosis.  I expect that many cases could be diagnosed earlier if doctors recognised that plenty of lymphoma patients never experience any of them.

    Good luck with the remainder of R-CHOP.  What is the plan after you complete that?

  • They told me my follicular skin lymphoma had transformed to a more aggressive DLBCL but when I read the scan report it said that they couldn't tell if it had in fact transformed to that or a systemic follicular. It didn't really matter as chemo was the same and if it was DLBCL although that has hopefully been eradicated, I'm still left back on watch and wait for the follicular.

  • Thanks Lolie. Good to hear that word 'remission'. Long may you be so.

    I'm pretty new to all this. (I had to look up 'DVT'). My team has told me aggressive lymphoma is very treatable, with very good statistics on recovery. And while at chemo yesterday there was a small ad hoc conversation amongst a few of us where it seemed no one had discovered their NHL without going through a strange breakdown in their system, such as pain at the base of their spine, or golfball sized neck lumps suddenly appearing on holiday overseas.

    Plan? Crikey, we've got loads of plans and ideas about what we want to do in life ... and Covid 'isolation' has given us lots of time to muse on them ,,, but, really, I'm just looking at getting through cycle 4 ... then a CT scan ... then cycles 5 & 6 and take it from there.